Simply Soares

Special Olympics Basketball!

2012-02-06T16:18:00.000-08:00

A new Special Olympics season has started around here!

It's BASKETBALL time!

Nathaniel is THRILLED that he gets to play "real" basketball!

And he had a BLAST out there on the court.

Notice the concentration tongue....

I tell you.... he was a TIGER on the court!

Look at him go!

Okay... sorry, but he was too dang cute out there!

I couldn't help taking a million pictures!

He might have been one of the smallest kids out there on the court, but that didn't stop him from taking them ALL on!

Audrey was sad she couldn't play, but she did find a cute little baby to help out with!

And she played on the sidelines whenever she got a chance.

Look at him.... no fear!

Although there might have been a little fear on that girl's face!

Mr. Nathaniel can't wait to go back to basketball next week!

DONE...... Finally!

2012-01-29T22:08:00.000-08:00

Dang.... sometimes I think the kid's school projects are just exercises in ways to torture parents! I KNOW that they are to expand the kids world, but still....

So Audrey has been working on this horribly hard project for the last two weeks. Part of the problem has been how sick Nathaniel has been, and therefore how tired I have been. But another part of the problem is that the project was a creative art project that also needed to be a book report. My artistic daughter spent countless HOURS over planning and executing the details of her creativity, but didn't want to spend ANY time on the book report part!

Case in point: She needed to make a list of "ingredients" in the books she was reporting on. She took TWO HOURS to "write" the few words out in the MOST DRAMATIC handwriting EVER. The problem? Other than it took her FOREVER and drove me bonkers? You couldn't READ the handwriting because it was so dramatic! When I pointed this fact out to her the answer I got in return was "But it LOOKS beautiful and it adds visual power to the project." Seriously? Visual power from a third grader???

So we had to compromise.

I INSISTED that all the writing had to be done on the computer, and that she could not spend more time on the execution of the art than she spent on the execution of the report. Could have been a BAD compromise on my part.

See, my kid is pretty smart.

I set a timer for how long it took her to answer the questions on the scratch paper, then type them all into the computer. Then the deal was she got to spend that long on the art too.

See a problem here?

Yup, you guessed it.

She DRUG out the writing part FOREVER to have FOREVER on her art.

Sigh.

Can't say I didn't try...

But the project is FINALLY done, and most of her planned "creativity" is still included in the project, yet it is readable enough for me to be OK with her turning it in.

So here it is, in all of it's glory:

I DID decide that this project was not a lesson in computer skills, so I helped with the formatting of the pages. That was a little over the top, but I did put everything where SHE told me to. And she TYPED all of the words, I just formated the pages so that they printed correctly.

Notice the words search in TEENY TINY letter that you need a magnifying glass to read, that was her plan! She was SO DETERMINED about that. Other than setting up the graph for her, and helping her to get all the words in there, I didn't help with this page. SHE put all those dang random letters in there! And she was HILARIOUS about the words she put in there NOT on her list.... her teacher's name, her school name, her name, thoughts about the project, the names she was calling her brother while he was picking on her during this project, ALL kinds of stuff. It was pretty funny to watch her.

And the BIGGEST plan of all:

The spring loaded turtle that pops up when you open the box... my goodness she was so funny explaining that to the guy at the hardware store where we had to go buy a spring! He thought we were totally crazy I am sure!

It might have felt like it was going to KILL me to get through this project without hanging her, but it is DONE! Finally.....

Now I need a glass of wine!

Open Arms

2012-01-28T22:47:00.000-08:00

Wait!

Stop the presses.... it's a MIRACLE!!!!

I am BLOGGING....

Crazy!

Yes, I know it has been like FOREVER since I have sat down to write on here. And I even really miss writing, but life has been.... well LIFE!

But today I just can't contain my excitement and my feeling of DOING what God asked me to.

Not just praying about it with my feet stuck in the mud.

Not ignoring His call.

Not using excuses why I can't or am too busy or too tired (and seriously? I AM busy, I AM tired and I AM fighting gloom... but life goes on!)

And I AM going to share it...

I AM going to find the energy to write a few words.

I AM going to find the time to post.

I AM going to shout from the roof tops "It feels GREAT to do what He asks us to!"

And I want you to "get this" right here and right now.

I am NOT bragging, I am only a lowly servant to Him.

I am NOT telling anyone else what to do with their life or their time, that is between you and your higher power.

I AM sharing what I am passionate about and how it blessed my life today!

For MANY years I have felt a tug on my heart to be involved in a food ministry.

I have prayed for YEARS for God to reveal to me HOW He wanted it to look, and for wisdom and discernment. I have searched my heart, His word, and pleaded for His leading.

In the last year I have gotten involved with a group at church that distributes meals weekly to the homeless. For almost a year, the kids and I have been making dessert twice a month for the BIG meal that our church group prepares. And for the past 2 Christmases my sister, Faline, and I have overseen the Christmas Eve meal that is cooked for our church family and the local needy.

And yet through it all I have felt Him saying over and over to do more. There is this specific "group" I feel called to bless, a specific hole I feel lead to pour into.

In the time I have been working with this group at church another woman and I have totally "jelled!" on what we were passionate about. Susan and I have known each other for a number of years, and been in church groups together for a very long time. For many months we have discussed a food pantry that would be available to the specific group, plus anyone else God leads to us. Susan especially has poured countless hours into getting all of the paperwork done, the red tape waded through and the details nailed out. Me? I am the worker bee! I carry the boxes, pack the car (because we ALWAYS buy too much for the car we are driving!) and provided whatever support I can to her.

Last weekend we were able to open the doors to Open Arms Ministry's Food Pantry for the first time!!

It was such a joy to finally be DOING it! Not talking about it, but DOING it! And we were totally blessed!

We didn't shout it from the roof tops, but we did hand out fliers to our congregation to use and to share, and we took 25 fliers to a local school. From that we were able to bless 14 adults and 9 children!! I thought it was a GREAT first day!

The most amazing think happened that first day. While we were handing our food items we had 2 people come in and donate food to us. Those two people brought in as much, if not more than the food items we handed out that first day! And we handed out a LOT of food! God totally blessed our works that day! We connected with dear people, and He gave us loaves and fishes!

So this week, during the week, Susan and I prepared again for a open pantry. It was a little hard to know how much we would grow this week, and therefore how much food to get, especially the perishable food that would not hold until next week. This morning was the day, and I was excited to see what God would do!

This morning I think we had close to twice as much food to give away. The fridge was STUFFED full and we had LOTS of frozen meats. It was crazy. I thought we were well prepared, but I also had this nagging little thought in the back of my mind.... what if? What if we only gave out for 20 again this week? Would the food hold? What could we freeze? Where could we distribute the stuff that wouldn't hold?

But then I opened the door for something and saw the people lined up.....

CRAZY!!!!

(Thanks Audrey for taking a team picture for us!!)

We had a wonderful team of volunteers, and we all ran our tails off.

I wish I had thought to take a picture when we were done because this week God brought us 49 adults and 20 children!!! AMAZING. We were OUT of food. Seriously. We had enough for the last people through the line, but there was almost NOTHING left. It was crazy!! Crazy GREAT, but still crazy!

I can not wait to see what the Lord has in store for us next week!

(although I might be just a little terrified too!)

It is SUCH a GREAT feeling to be DOING something to bless people in our community. I can't tell you the high I am on tonight. But then again, just that I am blogging in the midst of my January gloom when I haven't written in a month or so should tell you something, right?

What can you do to make a difference in the community you live in?

We can ALL do SOMETHING!

Audrey's Ballet

2011-12-19T08:19:00.000-08:00

On Sunday I got to watch Audrey and her friends in the Winter Showcase for her dance studio!

And take pictures too, of course!

This was the ballet piece she was in.

They danced to the "Dance of the Sugar Plum Fairies" piece from the Nutcracker.

Of the two pieces Audrey was in, this is the one she enjoyed the most leading up to the show.

But I think that is because learned it faster than her jazz piece!

They did very well...

And Audrey was thrilled ....

If you couldn't tell! LOL

I am thrilled too... that she enjoyed it so much and had fun!

My dear friend was kind enough to record it, so now you can see it too!

Hope you enjoyed it! We sure did.

Audrey dancing.

2011-12-19T08:14:00.000-08:00

Show Day 1!

2011-12-17T22:38:00.000-08:00

Princess Audrey has been working VERY HARD to get ready for her studio showcase show, and day one show was today!

This is her ballet class. They have been working on the Sugar Plum Fairy dance for this show.

Ballerina Audrey at dress rehearsal this afternoon.

And at the show tonight!

And one more from the show.

I actually worked back stage tonight, so I didn't get to see the show, but I heard that they did well and a friend took these pictures for me.

This is the Jazz group that Audrey is part of.

They have been working their booties off on a number called Dance Dance. This number was a REAL stretch for all of them, but I think they finally pulled it together!

I KNOW Audrey has been working so hard for this show, I can't wait to see her tomorrow!!

If you would like to come see her too, I know that there are a few tickets left for tomorrow's show!

2:00 in the afternoon at Studio @ in San Luis and tickets are JUST $10 for adults and $5 for kids!!

Call or text me if you want more information!

Christmas is coming...

2011-12-11T21:58:00.001-08:00

This was my Facebook status earlier today....

"my head hurts, my body aches, I am NOT getting sick, the kids won't do anything I ask, and my house is a MESS because I decided in the midst of everything else, it is time to decorate for Christmas today.... this could go one of two ways... Christmas could be canceled in our house, the decorations can all go back into storage in the garage and I can relax in bed with a nice adult beverage for the rest of the day OR a miracle will happen and my kids will suddenly become angels, the house will magically get pretty and clean and we will go pick out a cute CHEAP Christmas tree before heading out to Polar Express tonight. Wanna take guesses on which it will be???"

I must say, I am pretty impressed with how well it got pulled together! (of course mommy MIGHT have had a MINOR meltdown before it got pulled together, but who's telling?? Not me...)

First the outside lights on the house...

I started this yesterday, and it was going great until I plugged Nathaniel's deers in and then a string in beginning went out, and poof... no lights! Ugh! I was too annoyed to deal with it, so I walked away!

This morning, when I got home from church, I had an idea and went to work on fixing it. And I guess I did pretty well since it looks all pretty tonight!

Next up, window painting!

I bought a stencil kit at the Dollar Store and had window paint pens left over from when we owned the store and turned Audrey loose with them....

I think that the results came out great! Audrey did a great job and had a blast doing it!

Next up .... the tree!

We went to the tree place. I had $22 in my wallet, but there were no trees for $22. So we were heading back to the car, but the salesman stopped me to ask why. I told him that none of the trees were in out price range. He walked me around the lot and pointed out 3 trees that he would drop to what I had, and the kids picked this one from those three. Then we put it on the wheelchair lift to bring home! Made sense to me...

I think it looks great in the house, set up on a few milk crates with Nathaniel's Christmas train running around the base of it...

Maybe tomorrow I will get up the energy to actually decorate it!

Finally the house...

We got the entertainment center changed over to Christmas decorations.

Audrey set up the Nativity scene.

Audrey was a BIG help decorating this year!

And finally Audrey and I set up our Christmas village!

There is a lot left to do, but I think we got a start on Christmas!

Then we were off to live the Polar Express!

Special Treat .... Nutcracker!

2011-12-09T23:09:00.001-08:00

Tonight my children and I were offered tickets to go see the Nutcracker by the local Civic Ballet...

We ran into many dear friends while there. Some we have seen often, others we haven't seen in years.

The performance was wonderful, as always.

Afterwards the dancers were available to meet and take pictures with. These girls were friends of Clara... the sassy friends... very fun to watch!

Audrey loved watching all of the "real ballerinas". She kept telling me "I want to dance that role when I get great like her." It is wonderful for her to have goals!

This young girl was darling and very talented!

This dear girl I have made many costumes for over the years... I can't believe how beautiful and talented she is!

Of course, we HAD to meet the Clara!

Our good friends Marcus and Chaela with an old friend, Virginia, whom my kids and I haven't seen in years.

But for Audrey, the highlight of the night was seeing her director and teacher in a great guest role!

No, that is NOT adoration that you see on her face... nope not much at all!

It was great fun to see Ryan perform. He is a very talented man. And it was great for Audrey to see him perform, I think it will teach her more respect for him, as she sees what he does, and that he practices what he preaches!

All in all it was a wonderful night!

Take THAT Spina Bifida!

2011-12-09T11:30:00.000-08:00

Some things take YEARS of work....

But are TOTALLY worth it!

ESPECIALLY when the person doing it has been told that he will most likely NEVER walk due to his Spina Bifida!

Please take a few minutes and watch HOW AMAZING our God is!

And if this doesn't show you why I LOVE my God, and I LOVE PSC, nothing will!

The first year we surfed with PSC was 2009.

It had been a ROUGH summer with services, and disability related things. People who were supposed to be trained in interacting with children like mine dropped the ball big time, several times throughout the summer. Then there was this surfer guy at church trying to get me to bring Nathaniel to a surf camp for special needs kids. I would see him and go the other way! In my mind he just DIDN'T GET my kid. There finally came a time that I caved, and I agreed to bring Nathaniel to camp to check it out.

And it was LOVE at first sight.

Nathaniel LOVED surfing.

I was in TEARS on the beach watching my child get supported the RIGHT way in doing something special.

And the girls LOVED participating with Nathaniel.

This is a video clip from the first day Nathaniel ever did Project Surf Camp in August of 2009.

Notice the shallow water.

Notice the GREAT volunteers.

Notice the HUGE smiles.

In 2010 Nathaniel COULDN'T wait to get back to surf camp. And I was praying for a way to make his surf camp dreams come true. This was the first summer I was a single mom, and money was TIGHT to say the least. But God had a plan....

In June I got a phone call that would CHANGE our summer that year. John Taylor, the director of PSC was in a TIGHT spot. He had producers from NBC coming to film the camp the NEXT DAY, and the group that was going to be at the camp that day had to pull out for confidentiality reasons (it was a group of foster kids, and they couldn't be on national television!) Now I KNOW special needs people, and I have connections in that community. With a few phone calls we were able to have a camp full of kids for John the next day!

Check out what happened that day HERE!

Thus began the 2010 Pepsi Refresh ride for our family with Project Surf Camp. It was a summer I could NEVER have dreamed giving my kids and we had a BLAST riding the wave with PSC. John was so grateful for my help getting kids to his big day that he let my kids surf often that summer. And we were always invited to NBC/Pepsi Refresh events.

Through countless adventures with PSC in the summer of 2010, Nathaniel became more confident, more daring and more in love with surfing!

He even won his very own surf board!

This is 2 video clips from Nathaniel surfing in 2010

6.25.2010

Notice the independence.

Notice the confidence.

Notice the joy.

6.25.2010 With assistance....

Notice the dedicated support to bring about victory.

Notice the little boy who was not supposed to walk....

Surfing has become a passion for my kids. They LOVE it. In 2011, I was generously invited to join the board of directors for Project Surf Camp. As a board member, one perk was that my kids got to surf OFTEN in camp! We spent countless hours on the beach, me shooting pictures, Nat and Audrey surfing in camp and Brianna volunteering with other campers. It was a family event, and for those five weeks we lived PSC.

7.29.2011

Through the tears in this mommy's eyes there are not words to describe that clip.

My boy. Born with Spina Bifida. Getting himself to a standing position on a moving surf board unassisted.

PRICELESS!!!!

This is why I LOVE our PSC family.

And this is why you will ALWAYS see me doing anything in my power to keep the funding rolling in for PSC so other families can experience this joy, this astonishment and this unforgettable feel good!

Our God KNEW what he was doing when he place the dream of PSC in the hearts of many fabulous people and brought this dream to reality!

A Thanksgiving Letter From Audrey

2011-11-24T10:58:00.001-08:00

Dear Mrs. Turkey,

You are invited to a Thanksgiving dinner on Thursday, November 24, 2011. We will be serving corn, cranberry, mashed potatoes, bread rolls and pumpkin pie. Please bring some food to share, like olives! We will have lots of desserts like apple pie and oreos. During the party we will play games and go to the park. I sure can't wait to ~~eat you~~ , opps I mean MEET you. Hope you can make it!!

Your friend,

Audrey

Thankful Day Nineteen!

2011-11-19T13:42:00.000-08:00

Thankful Day Nineteen!

I am thankful that a simple act of self care can also be an act of blessing others!

I was well aware of the fact that Mr. Nathaniel needed a hair cut.... ESPECIALLY with Thanksgiving almost upon us. Growing up, whenever my grandparents thought that my brothers had too long of hair they would clip it back out of their eyes with girlie hair clips! I know that we will be seeing my grandparents over the holidays and I didn't want Nathaniel being subjected to the hair clips, so off we headed to Super Cuts!

I hadn't had a hair cut in over 18 months (see how long my hair is in that picture? LONG for me!) and I had a bit of cash on hand, so I thought I would get a trim too...

While I was sitting there looking at the books to see if anything jumped out at me as super cute the man across from me made mention of how short of styles I was looking at and how long my hair is. I told him, kinda nonchalantly, that about every 18 months I get it all hacked off and start all over again. He then said something about hoping I donated my hair or something since it was so healthy and pretty.... Ah, sweet man. But then I noticed that he said it with tears in his eyes.

When the stylist called my name I set the book down, not really knowing what I was going to ask her to do to my hair. So I decided to ask her where the 10 inches fell (10 inches is how long the pony tails for Locks of Love are supposed to be) . She showed me, and it was pretty short. I was sort of thinking about it, when she said "You know, with as thick and healthy as your hair is we could do two pony tails for Locks of Love, and that would bless 2 people!" That did it.... I told her to cut them off then surprise me with a new do.....

This is what I ended up with!

Pretty cute, but even if it was awful, the cool thing is it is JUST hair, and mine grows pretty fast!

It was completely worth it to give to someone who is not blessed to have hair growing because of an awful disease!

From here to there, all to bless another...

How lucky am I?

Simply doing something for myself can turn into a blessing for others.

And we didn't forget Mr. Nathaniel either....

He is looking quiet dashing with his new do too!

Spina Bifida Awareness: Meet Kayleigh

2011-11-17T02:30:00.000-08:00

Even though October and Spina Bifida Awareness Month is over, Tiffany from Growing From the Obstacles still want to continue bringing you a look at what Spina Bifida REALLY is, and the stories of our friends and family who live with it daily!!! We will feature stories of SB families and their journey every Thursday, as long as we have stories to feature!

Today we get to meet darling Kayleigh!

In 2009 I found out I was pregnant!

Up until about 28 weeks I had a perfectly normal pregnancy. But once I hit the 28 week mark things changed, I was diagnosed with bacterial vaginosis. The next week I had some slight bleeding. Before I knew it my water broke. My water broke @ 29 weeks & I was admitted into the Med Center in BG, KY & immediately put on magnesium sulfate to stop contractions.

I was put on a higher dose than normal & extremely out of it!! I was seeing double & talking out of my head. I was also given the steroid injections to help with Kayleigh's lung development in case she was born premature. I had a Foley catheter & was not allowed out of bed for any reason. Drugged, not able to move, bed bound, catheter,etc. All I could do was hold onto my baby girl!

I was at the Medical Center for 4 days then transferred to Women's Centennial hospital in Nashville to be placed under a high-risk OBGYN. Almost a month went by of me laying in bed. Kayleigh Ann kept us together! I had had several Terbutaline shots to stop contractions, Procardia 3 times/day by mouth, several ultrasounds & tests, lab work every morning, plus several different antibiotics & even on triple antibiotics at one point!!

I was awoken Jan 31at 12am with stunning pains. I was given another Terbutaline shot to stop contractions & it helped.

4 am came and the pains started all over again!

I was asked if I wanted another shot and I refused (it would just be the same thing). The Dr said to start Magnesium once again and I immediately burst into tears. Please God! I refused the Magnesium. I knew how it made me feel & how it made Kayleigh feel. I was already 4-5cm dilated so there was absolutely NOTHING they could do/could have done to stop the labor.

9:53 am Kayleigh Ann Richards was born weighing 4 lbs 8 oz. Exactly 32 weeks. Thanks to March of Dimes Kbug only kept her oxygen until the next morning. The steroid shots for her lungs WORKED! She had a feeding tube, but it was never used so after a couple of days it was taken out.

When Kayleigh was born my husband noticed a skin tag on her butt and we were told it was nothing to worry about. The skin tag ended up falling off on it's own but the bump under the skin tag remained. She had several different ultrasounds, etc while in the NICU and we were told it was just fatty tissue and we would be sent to a neurologist for further testing after being discharged.

The "bump" she was born with grew as she grew. We didn't find out Kayleigh had Spina Bifida till she was 5 months old (when they finally said she was old enough to have an MRI).

The MRI showed she had a tethered spinal cord and we were scheduled for surgery. Kbug's surgery was around 7 months- she had a release of a tethered spinal cord and removal of lipoma (the "bump" she was born with). We stayed in the hospital for about 4 days. Kayleigh had ran a fever of 104 so we had to stay longer than expected.

Once home the week after surgery her incision looked like it was trying to come open so we took her back to Vanderbilt. They assured us it was okay and sent us home with an ointment to administer to her back once a day.

The next week the incision was showing signs of little pins holes. Once again we took Kayleigh back to Vanderbilt and her top incision was opening (apparently they had sent us home with the incorrect ointment to administer). Kayleigh stayed for about 4 days and was sent home with a PICC line where I had to administer IV antibiotics for 2 weeks- morning, afternoon, thru the night. It was A LOT! But through prayer and family support we made it through!

Kayleigh's scar is now healed and fading with each day.

She's also walking unsupported and improving every day!

We are so thankful for the blessings we have been given!

Kayleigh is a joy!

Kayleigh is catheterized every 3 hours but we've been cathing since she was around 8 or 9 months so she's now used to it and we have no problems. God is constantly working miracles and we can not thank him enough for our little princess!

Stephanie Richards

"Remember that you were given this life because you are strong enough to live it"

Thanks Stephanie for sharing Kayleigh's story with us!

If you would like to be part of this on going project, please feel free to email your story to us at simplysoares@att.net

Thankful Day Fourteen!

2011-11-14T11:18:00.001-08:00

I am sitting at my table with my checkbook and bill pile..

And today I am thankful for the ability to PAY my bills each month...

AND....

*drum roll please*

That I was able to chip away at a medical bill (we have LOTS of those in our life) and today I wrote the FINAL check to pay this particular one off!!!

I am going to ignore the pile of others that have about $15,000.00 total on them to finish paying off, and do the

HAPPY DANCE

That this one is paid off!!!

Thankful Day Thirteen!

2011-11-13T22:30:00.000-08:00

I am thankful for WONDERFUL memories of these TALENTED men from when I was growing up...

And thankful to have the opportunity to expose my children to them too!

We had a BLAST at the Preservation Hall Jazz Band show last night...

And man you should have SEEN Audrey boogying down!! So sweet...

Hope you guys come back to California soon!!

Thankful Day Twelve!

2011-11-13T08:05:00.001-08:00

I am thankful for the ability to pinch pennies and give my kids a fun vacation, even when we really couldn't afford it!

Gas: $77.00

Parking: $12.50

Monterey Bay Aquarium: FREE!!!

Hotel: $42.50

Gilroy Gardens: $41.00

Food: $69.78

Grand total: $242.78 for two days vacation and fun filled activities both days!

Not bad...

Especially when you consider that the tickets to the two places we visited would have been $204.82 alone if I had purchased then without any discounts!

Monterey Bay Aquarium

2011-11-12T23:32:00.000-08:00

I took the kids on a short trip with some friends for our long weekend...

First stop on our agenda was Nathaniel's favorite place EVER....

Monterey Bay Aquarium!

Thankfully Audrey likes it too....

And we have a DEAR friend with sponsor passes that she lets us use regularly!

Such a blessing to be able to take my kids to the is great place for free whenever I want (within reason of course... it is a 2 hour drive, and I do need to let her use her passes sometimes!)

Nathaniel loves all of the sharks!

He was really bummed that we missed the great white that was there a few months ago.

Audrey liked this one... she was wondering if it would fit in our fish tank at home!

This was a cool new thing. The "menus" are touch screen computers, and when you order something to "eat" the people come up on the screen and tell you why it is a good environmental choice or not in a fun and entertaining way. I really enjoyed it, and learned a lot listening to the kids play!

Nathaniel's other favorite place to visit is the penguins!

They are so dang cute!

I like the room with the fish swimming around your head...

THOUSANDS of fish swimming in circles around and around.

This is TOTALLY how I envision the thoughts in my head on a regular basis!!

Feeding time with the penguins is always fun too!

I like the turtles too... but this guy would not come down to visit... he kept swimming above our heads for the longest time.

Could be because this guy (and some of his brothers) were swimming around lower in the tank!

Anyone who knows Nathaniel know he LOVES to hide under things.

If I can't find him at home, he is usually UNDER the kitchen table.

And he OFTEN freaks me out at dance when he is under a counter somewhere and I can't find him.

The kids and I had a great time at the Aquarium.

Thankful Day Eleven

2011-11-11T06:47:00.001-08:00

Today I am thankful for the men and women that fought to give us this great country we will in.

Including my dear Grandpa.....

THANK YOU service men and women of the United States of America!!!

Today is Veterans Day! This holiday recognizes and honors all of the military veterans who have served our country. Veterans Day is celebrated each year on November 11, the anniversary of the signing of the armistice that ended World War I. President Wilson proclaimed the first Armistice Day in 1919, and President Eisenhower changed the name to Veterans Day in 1954. Similar celebrations take place all across the world.

There are over 20 million veterans living in the United States. Today, we honor all of those men and women for their patriotism, and their willingness to serve and sacrifice for the common good of our country

Thankful Day Ten

2011-11-10T08:00:00.000-08:00

Today I am thankful for this guy..

This guy is my kids pediatrician...

And we LOVE him!

He is a GREAT doctor, but more than that...

He is kind.

He is compassionate.

He is caring.

He is understanding.

He is supportive.

He is Godly.

He is empathetic.

He is funny.

He ALWAYS has an encouraging word for me.

He is humble.

And he is not afraid to say he doesn't know something, then go learn it!

We are SO BLESSED to have this man in our life and caring for my children, especially my little man with all of his uniqueness!

Spina Bifida Awareness: Meet Nanette!

2011-11-10T02:30:00.000-08:00

My name is Nanette Martin. I am 39 years old and have Spina Bifida, I will actually be celebrating my 40th birthday just a couple weeks before Christmas, and I DO mean celebrating! I consider it an accomplishment to have made it this far and am so happy to be alive! I was very fortunate that even though I wasn't born in a large city, when I was born there were drs there that had knowledge enough of SB that they knew what to do, and I had life (and function) saving surgery just a few hours after I was born. Within days I was also diagnosed with Hydrocephalus and had a shunt put in as well. So far I've had 32 surgeries, most, but not all, directly linked to my having SB. I walk with crutches and braces, and use a wheelchair for longer distances and/or periods of time.

I was raised by parents who didn't treat me "special" because of having a disability. They treated me special because I was their little girl, their one and only out of 4 kids. I had brothers who could be my worst tormentors at home and my greatest champions should anyone, other than them, mess with me out in the world. :) I had chores and responsibilities and expectations to do well in school. I was given many opportunities as a child to experience life just like any other kid. I went to "regular" school and was only mainstreamed into public school for 2 years of my elementary education. I went on trips and vacations with my family and traveling is still one of my passions to this day. I went to dances at school, had boyfriends, (a couple of them much to my parent's chagrin!) experienced heartbreak, did things I shouldn't have (and survived!), had best girl friends, one of whom is still my best friend to this day, attempted college, moved out of my parent's house when I was barely 20 years old, made mistakes and had to move back for a time, moved out again with another friend. I've held several jobs, and hope to join the working world again someday. I lived life!

That life has not been without it's challenges and I have been in the fight of my life for the last 2 years after experiencing life-threatening complications after having gastric bypass surgery in January 2010. I guess that's why, like I said earlier, turning 40 this year is to me a reason for celebration, because I can honestly say there have been more than a couple times in the last 2 years when things weren't looking good for me. I am truly lucky to be alive and try to remember to thank God every day. Even though I am still fighting, I am starting to feel like the old me again, only better, hopefully healthier in the long run.

Another reason I have to celebrate is that even amongst all the horror of my medical situation, I was healthy enough this year to go ahead with my wedding, which was originally scheduled for August 2010, but had to be postponed. On May 21, 2011 I married my wonderful husband Brad whom I have been with for almost 7 years now. He has been my rock, and I know I would not be here now if not for him and the love and support of my family, and many prayers from family, friends and loved ones.

Having SB is hard, but LIFE is hard! But life can also be wonderful, and weird and challenging and rewarding. Whatever else it is, it is a gift!

Thank you for sharing your story with us, Nanette!!

Thankful Day Nine!

2011-11-09T06:57:00.000-08:00

Today I am thankful for STUNNING sunsets while I wait for my kids to finish golf lessons!

We are so blessed to live where we do!

Giveaway Fun!

2011-11-08T16:10:00.000-08:00

Over at Simply Soares Creating 4 Care we have a little giveaway going on that I thought you might like to check out....

It's that time....

Tuesday Treasure Sale is HERE!!!

And today, I am adding a little extra fun to the mix! Go to our Facebook page and like us! Then click "share" and share with your FB friends... I will do TWO giveaways next week! One for the people who shared this link, and one for new followers if we can get that number up to 75!!

So share away and let the fun begin!!

And this week's Tuesday Treasure sale is pretty awesome too....

This BEAUTIFUL twin sized quilt usually sells for $160.00

BUT THIS WEEK...

It is ONLY $125.00!!!

Go HERE for this great deal!!!

And don't forget to sign up for the Giveaway!!!

Step One:

Like our Facebook Page

Step Two:

Share this week's Tuesday's Treasure link

Optional Steps:

Blog about this giveaway and leave a comment telling me you did

Share about this contest on Facebook and leave a comment telling me you did.

Thanks for playing!!!

Thankful Day Eight

2011-11-08T15:09:00.000-08:00

Today I am thankful for a Lord that knows my every need, most times even before I do!

Like a text from my pastor asking if someone else can do Friday's homeless feed before I added 2+2 and came up with the fact that I would be out of town at the tie of feed on Friday!

Or the direct deposit that hit my account 3 days early when I REALLY needed it, but my DD is ALWAYS late, and hardly EVER early!

Or the sweet phone call that I just got, blessing my family and at the same time allowing me to share the blessing with two other families near and dear to my heart!

I LOVE it when I can see His divine plan all around me. It helps me to remember it is there during the storms when it is harder to see!

Thankful Day Seven!

2011-11-07T17:06:00.000-08:00

Today I am thankful......

That SOMEONE went to school today for the first time in over 3 weeks!!!!

Sure, he is weak still, so he is in his chair,

But he went to SCHOOL!!!!!

Thank you Lord, my boy is geting a bit better!!!!

Thankful Day Six

2011-11-06T16:54:00.000-08:00

I am thankful for the sweet hearts of my darling children!

I asked them Saturday if they wanted to give up their Sunday after church snack to make Operation Christmas Child gifts for church.....

And I got a resounding "Yes" loud and clear!!

With joyful hearts I took the kids shopping Saturday and they filled their boxes VERY FULL... It was so much fun watching them pick things out thoughtfully and put together great gifts. And Audrey even wrote a letter to the child receiving her box. It brought tears to my eye watching them!

So I am thankful for the sweet hearts of my children!

Thankful Day Five

2011-11-05T19:14:00.000-07:00

Today I am thankful for snuggle time watching movies with my munchkins...

Nothing better than curled up in my bed, with my darling children, watching movies on this COLD night.

Thankful Day Four

2011-11-04T14:17:00.000-07:00

Today I am thankful for the beauty all around us...

Especially the beauty God uses to remind us of His promises to us!

The kids and I saw this beautiful reminder from God on our way to the food bank today for our weekly groceries.

Thankful Day Three

2011-11-03T20:29:00.000-07:00

Today I am THANKFUL for this darling couple...

Last night at small group Bible study I asked if anyone had any down time to consider coming over and hanging out with Nat for a little bit so I could get some work done. He has been SO clingy and will NOT let me get anything done. It has been a CRAZY three weeks, and I am SERIOUSLY behind on orders, house keeping, bill paying and life in general! Our group was VERY SMALL last night compared to normal, but I still threw it out there.

Before I even got home from group (I stayed a bit late and talked to a friend) I had a message from Tessa on my Facebook... say that she and her fiancee Chris had some down time today and wanted to help out!

Chris and Tessa came over this morning, bearing momma gifts of caffeine (peppermint lattes are here!!!) and hung with Nathaniel for a few hours! Together they got more of his homework done this morning than I have managed in the last two days combined! They played LOTS of Wii with him (I even heard him teaching Tessa a thing or two in there!). And best of all they answered all of his NON STOP questions, chatter, obsessions, ect. I have a few hours of peace to knock out some WORK!!!! I got three big orders done, printed invoices to get paid on jobs, and packaged two orders to ship out. I think it was the most productive day I have had in at least a week!

I was SO BLESSED and SO THANKFUL to be able to just knock out what I needed to without having to worry about Nathaniel at all!

And the most amazing thing to me is that I KNOW these two have a to do list of about a million things to get done in the next week, since they are GETTING MARRIED in 7 days!!! But they were so kind and filled with grace to spend 4 hours entertaining my son and giving me a MUCH NEEDED break in the midst of their own business.

How blessed am I?

SO BLESSED!!!

Words can not express the blessing Chris and Tessa were to me today, nor can they express the level of thankfulness in my heart!

May God RICHLY BLESS you both, and may your wedding NEXT WEEK! be EVERYTHING you dreamed it would be!

Much love!

Spina Bifida Awareness: A Grandmother's View...

2011-11-03T02:30:00.000-07:00

Today, we hear from a Grandmother to a very special little girl, named Lyla!

As a grandmother of a child with Spina Bifida, it has been an amazing journey one that I

truly admire. I only expected the worst because of what the doctors said, but it didn't matter I believe that a life is a gift from God and no matter what challenges we will be faced with, its not impossible because he is the one that gives dynamic strength and endurance.

But let me tell you what my precious Lyla has taught me that their are no boundaries for anyone. And true love sees no boundaries. Lyla has given my life so much joy and happiness that it brings tears to my eyes. It doesn't matter what Lyla needs or what she may need help with I will always be there!! I've always known how precious life is but Lyla has helped me see it in a way I never knew. I enjoy every second with Lyla, to see how determined and patient she is teaches me what life is about. Imagine that a 1 1/2 year old teaching a grown up. Isn't that what we all need to be successful... Determination and patience? And my grandbaby is teaching me that, I'm indebted to her.

When I'm with Lyla I do not see the things she can't do, she makes me blind to that. All I see is a happy, beautiful and an intelligent little one. I never want to let her down because she has not let me down. Also my precious grandbaby has made my daughter into an amazing mother. I am so proud of my daughter, she is the mother I hoped she would be and more!! So you see Lyla isn't fortunate to have us, we our fortunate to have Miss Lyla Alyse!! She has made our life wonderfully amazing!

-Melissa Olmeda

Thankful Day Two

2011-11-02T20:00:00.000-07:00

Today I am thankful that I have grown in God's grace and compassion to the point that I can over come my fleshly tendencies and see through my God goggles!

My flesh would hold grudges, be bitter and say "no way in HELL"

Load #1 packed and neatly stacked... alone....

With God goggles, I can rise above my feelings, and so grace and kindness as Jesus would.

Focusing on God's heart for the lost, I can be the bigger person and serve my fallen brothers and sisters...

and even on occasion my fallen ex husband...

with grace and kindness!

Even when it is BLAZING hot,

the ONLY storage unit I could find was UPSTAIRS

and the bottom of the biggest box feel out of it half way up the stairs.

Even then, I only SLIGHTLY cursed in my HEAD...

And wondered exactly how Jesus would react in THAT situation???

But without Jesus in my life I GUARANTEE I couldn't have even considered what needed done, let alone did it!

Praise the Lord, that I am growing in maturity and can deal with "situations" in a better way than I could have even 2 years ago!!

Nathaniel health update and a little quilt love...

2011-11-01T08:00:00.000-07:00

*it is time to cross promote.... because this recent health battle of Nathaniel's is taking a TOLL on my finances!!! Plus, who doesn't LOVE beautiful quilts????*

Read to the bottom for the newest update on Nathaniel....

Winter is Coming....

Is your bed ready???

Or do you need a beautiful warm quilt to keep you warm this winter???

Today's Tuesday Treasure Sale is JUST FOR YOU!!!!

Use the coupon code 20QUILT to get t20% off of ANY quilt in the shop this week only!!!!

(I am in the mood to make a new quilt and can't until my stock sells down some...)

Now go to the QUILT section of our Etsy Shop HERE and shop away!!!

*as always, if you are interested in purchasing and are local, convo me and we can set up a delivery/pick up time and I will waive the shipping fees!*

Now for what you REALLY want to know (right?)

Mr Nathaniel.... is STILL so sick ...

Three weeks ago today, this current trial began with a routine dental procedure. (Man, we just can't do routine in his world. A routine T&A years ago caused us weeks of hell too....) Yesterday his newest levels came in. His blood looks great but his urine and nitrates are still very off. We have the newest, and LAST non IV medication to try.

So last night we started on Cipro... and are PRAYING that this is the magic we need, because I am TIRED and BUMMED and STRESSED OUT. I can't even imagine how defeated Nat is feeling! I am ready to KICK the not good crud OUT of his body and claim VICTORY! I am ready for my boy to go back to school, and I am ready to sleep through the night not worrying about my boy.

So if you are the praying type, we LOVE your prayers. I honestly think that they are the only thing keeping us going right now! And, as always, thank you for standing with us on this journey!

Thankful Day One

2011-11-01T03:00:00.000-07:00

Today I am thankfully (and eternally grateful for) a Lord who loves me through it ALL.

On the journey of life, I know NO OTHER way I could endure what I do. The Lord is there with me every step of the way, loving me, guiding me, carrying me when needed, so that I have hope and joy through this journey, that I may reach His kingdom and have everlasting joy and glory with Him!

So often I hear people say "The Lord won't give you more than you can endure." To them I say YOU ARE SO WRONG!!! The Lord does push us, stretch us and grow us... BUT He will be RIGHT there in the trenches with you EVERY step of the way, if you open your heart and let him in!

Thank you Lord that you provide a path for ANYONE who needs you, wants you and loves you through your son Jesus Christ!

Spina Bifida Awareness: Meet Madison!

2011-10-31T02:30:00.000-07:00

For this LAST day of October, we have the privilege of meeting Madison!

When I was a young girl, I used to fear that God would give me a special needs child. It was always in the back of my mind that this was something that I would not handle well, and I feared that God would test me. I have seven children, and with each pregnancy, I worried, and with each one, up through the sixth, I was relieved to find out that everything was "typical." When I got pregnant with Madison I had been reassured by my doctor that with each normal pregnancy, the chances of something going wrong decreased. I really didn't worry, and when I went in for my ultrasound at 16 weeks, I was only concerned with whether this was a girl or a boy. When the tech had me roll over to face the wall, so she could get a different view, I didn't worry. When she took 10 times the number of pictures, and got very quiet during the exam, I pondered it, but didn't worry. Then I went in to see the doctor, and he said that they couldn't get a good look at the spine, so I needed a level II ultrasound. A full week of anguish, hoping for the ultrasound to be normal. But I knew, in my heart that something was wrong.

When we received the diagnosis "spina bifida" I was heart broken. Our doctors were quite optimistic, which I am very thankful for. Nobody encouraged me to terminate (although it was offered), and they gave me some booklets on the condition which were helpful and scary at the same time. I soon found a support group at Babycenter.com and finally felt like I had arms of understanding surrounding me. It was a grieving process realizing that the baby I had pictured was going to be challenged in ways I couldn't even know yet. When Madison was born, we were told her defect level was L4-5 and that she had a 40% chance of walking. I was angry at that statistic, and never shared it with anyone. I knew that Madison would show us what she could or couldn't do. She had a shunt placed at 6 months. She crawled at 10 months. Walked with a walker at 15 months. Now walks independently with AFOs since about 27 months. She dances, she sings, and will be running soon, I know it.

Now, almost 3 year later, I realize what a true blessing this journey has been, and will continue to be. Madison lights up the house with her sharp and sweet personality, and fills the house with noise, as she is by far my loudest child. She is beloved by all her siblings, and I know they will have a level of understanding for others in this world that have challenges as well. How can you place value on these things? They are without price. I thank God for Madison, and pray He continues to use her and us to bless others as we come into contact with them. I know I have been blessed beyond measure by all the families I've met in the spina bifida community. They are amazing people.

In Christ,
Kim
Php 4:11b for I have learned, in whatsoever state I am, therewith to be content.

http://blessedhope13.blogspot.com/

http://www.searchoutthescriptures.com/

Spina Bifida Awareness: Meet Jeremiah!

2011-10-30T02:30:00.000-07:00

Today we share a story about a handsome little fella, named Jeremiah!! Here is what his mom, Hannah has to say about him:

We found out at my 20 week ultrasound that Jeremiah our son had Spina Bifida. Actually, our doctor never said Spina Bifida when he was explaining everything to us. He kept saying myelomenigocele, a term I had never heard before. As we were walking out, it was the nurse who told us the more common name. And that is when I remember first feeling scared. I knew about Spina Bifida. I knew that there is a wide range of abilities and challenges in the SB community. I didn’t know where our son would fall in the spectrum. I hate the unknown.

Jeremiah was born on April 19, 2010. I delivered by C-section, and got to see him for a few precious minutes before they took him through underground tunnels to a connecting Children’s hospital. My husband Chris went with him, and I stayed with my parents in recovery at my hospital. Jeremiah had his initial surgery to close his back just hours after he was born. About six hours after he was born, Chris rolled me in a wheelchair through the tunnels so that I could see Jeremiah. We did that every three hours for three days so that I could feed him and spend time with him. It was such a relief for me to be released from the hospital.

Jeremiah was born in the pike position, with his legs up by his head and his knees hyper extended. He could not lower his legs, and I was concerned that he would not be able to even sit in a wheelchair. Through a series of casts, they were able to lower his legs and bend his knees, and also help to correct some clubbing in his feet.

Jeremiah has a shunt and has had one shunt revision. He is very healthy! He just tested out of occupational therapy, and he is progressing in physical therapy. He is now 18 months old and he has just started to take some steps. He has done more than I ever thought possible!

When he was first born I remember wondering if I would ever stop equating Jeremiah with Spina Bifida. What I mean is, every time I thought about Jeremiah, I remembered that he had Spina Bifida. I am happy to say that now, Spina Bifida no longer defines him, at least in my mind. He is so much more than SB! He is funny; he’s a tease; he’s a momma’s boy; he’s ornery; he’s a fighter. He loves to pray in sign language and pat the Bible. He loves being outside. He loves to throw rocks and get dirty. He’s just a kid. I can’t imagine our family without him!

Thank you Hannah for sharing Jeremiah with us!!

Give Thanks Calendar!!

2011-10-29T08:33:00.000-07:00

Have you seen this AWESOME calendar???

I think that it is SO GREAT that I just have to sing it's praises to you!

The Give Thanks Advent Calendar is a GREAT tool to use in your family, with a class or group, or even with a study group. The way that we have used this in our family is each day at dinner time we go around and say what we are thankful for that day. We wrote down our answers on a small card and placed the card in the pocket of the calendar. At the end of the month I complied all of the cards and put copies in each child’s scrapbook, that way years later they can see what they were thankful for! I have also put prayer points in the pockets, and each day we have prayed for the points on cards. Another thought I had, but have yet to do, is to put acts of service on cards in each day and teach my kids how great doing an act of service can be! As you can see there are TONS of great uses for this wonderful hanging.

*This IDEA is not my own, I have seen many of these, but this kit is my own personal spin on it, and my way of letting you make this project YOUR OWN!*

Since we enjoy our calendar so much and I think it is such a GREAT teaching tool with kids, I have put together some for my Etsy shop! There are two ways that you can make this yours RIGHT NOW, just in time for this years Thanksgiving season (although we use ours all year long at various times!)

The first way that you can make this yours is to but a KIT that has everything you will need in it to create this with YOUR family!

Kits are READY TO GO and can ship out TODAY Priority, so you would have it JUST in time for this year! If you would like to purchase a kit, go HERE!

Each kit includes:

~A background piece that is 24 x 34, with a 1.5 inch rod pocket already stitched across the top.

~30 pre-cut pockets, and one rectangle for the title area.

~Pre-cut letters (give, THANKS) and numbers (1-30) in the colors shown in the pictures. (The numbers and the word give are on self-stick felt, the word THANKS is not)

~the “treasures” shown in the second picture (or VERY close to those exact treasures, no kit has less, some have slightly different items than pictured)

~detailed instructions on how to complete your calendar

What you will need to provide:

~Glue (I suggest E2000 or FabriTack)

~Imagination

~I dowel or ribbon to hang the finished hanging

*OPTIONAL: each calendar CAN be made with just glue, OR you can sew the pockets on like I did. I like sewn pockets for longevity to use it year after year, but this project CAN be completed as a no sew project if you like.

The second way that you can make this yours is buy purchasing a pre assembled wall hanging! I have do all the work and you just have to ENJOY your calendar!!!

The soonest I can ship out the pre assembled wall hangings is MONDAY, but I will still ship them Priority so you should have them very quickly! And you will be able to hang it right up and start using it NOW! If you would like to order a pre assembled wall hanging Give Thanks Calendar go HERE!

*As always, if you are local and want to pick up instead of paying shipping, please convo me to arrange it!*

AND I will have a booth at OctoberFest here in Los Osos TOMORROW, and these will be with me there too! Hurry quick, before this year's kits sell out!!

Spina Bifida Awareness: Meet Magan!

2011-10-29T02:30:00.000-07:00

Today we hear from a wonderful lady named, Magan!

I would love to say that this is happy and uplifting, but it isn't. Sorry. :+) But it does have a happy ending!

This is my story...

I was born in 1973. Back then, they were just beginning to have the technology to be able to save the lives of babies with Spina Bifida/hydrocephalus and give them half a chance of a "normal" life. My father had been in Vietnam when I was conceived and a correlation between Agent Orange (which my father had been exposed to during his time in the Navy, as well as asbestos) and Spina Bifida was later discovered. I was well into my twenties by that point and had had a fairly difficult life. The doctors told my mom not to expect anything from me--that my life wouldn't amount to anything productive or useful. My mom, being a stubborn, feisty, independent woman, raised me to be a fighter, but all who know me said that I came out of the womb swinging! There's even a joke in my family that says when my doctor spanked me, I turned around and smacked him back! Haha!

I never had a relationship with my father, who later told me, to my face, that I wasn't wanted as part of his life. His loss, I think. :+) But then, after my parents divorce, my mom and I moved to California, where a whole new world opened up for me. We spent a year in Santa Barbara, where I began to learn independence, then we moved to Northern California, where I was abused by someone who was supposed to 'love' me. Thankfully (?), the majority of that year, I spent in Shriner's Hospital in San Francisco, having rods placed in my back and my legs straightened. It was a good year! Haha. I learned independence quickly and learned how to rely on myself, and not others. After my release, we moved back north, until we moved back to Santa Barbara, where we would live until I was sixteen.

School was less than stellar. I was never a good student. I was bright, but unmotivated. I wanted to be anywhere but in school. And I was wildly creative, and imaginative. I am a writer by nature, so I was always getting in trouble for 'having my head in the clouds,' Haha! I had a lot of good people who surrounded my mom and I, but who didn't completely understand me. I know they often felt frustrated for my mom, because I was such a difficult and stubborn kid. When I was eleven, I descended into five years of hell, known as my teenage years. I was angry, I was stubborn, I was difficult and I didn't know how to harness it (yet). I was also being sexually abused and didn't know how to tell anyone, including my psychoanalyst. I told a story to a few people at school and it was me trying to tell them that I had been abused, but nobody knew to take it that way and I got into a lot of trouble, because no one could read between the lines of what I was saying. Nobody.

I had my first severe shunt failure when I was twelve. I almost died. Yeah, that was fun! Haha! But my mom sought out a great doctor for me, who saved my life and gave me a chance to see things through a different lens. But I was still angry and would be for many years to come. Anger was always my lifeblood, until I discovered love.

I also did not believe that God existed. I had had a dream when I was nine that was the worst nightmare I ever had. I still remember it to this day: God was killed by venomous spiders and snakes, leaving me alone in the world. Even though I was raised by a good Christian mom and surrounded by a good Christian family, I was still alone, I felt. During this time, I met a woman who started out as my social facilitator, who quickly became one of the best friends and advocates I'd ever have. Her name is Rena and I owe a lot of who I am today, to her. She is a psychologist and began my journey into becoming myself. She accepted and loved me on 'my' terms. She also introduced me into competitive sports. I was able to harness a lot of my pain and anger through competitive wheelchair sports. I was so good at competition, especially racing, that I made it all the way to the California Wheelchair Games. I came in second, due to a technical difficulty.

When I was sixteen, my mom and I moved back to Michigan. I was in tenth grade by that time and I didn't want to move back. But, when you're sixteen, not emancipated and disabled, you have few choices. So I moved back and settled into an even angrier me. I quickly gained a reputation as "someone you don't want to mess with," that still sticks, even though I am not nearly as angry as I was then. And my relationship with my father came full circle also, as I tried desperately to have a relationship with him, only to be treated as unwanted. Finally, I stopped caring.

When I was in my early twenties, I met a man named Gary, who changed me. He was the cousin of a friend and we were close. He taught me that I was beautiful, inside and out, and taught me how to let go of that anger, in so many ways. He taught me that I was beautiful, even if I didn't feel it. And I never did, until I met my husband, in 1999. My husband and I knew at our first meeting that it was destiny and nine years later, we were married. The reason? I needed to know that when my body failed me, he wasn't going to. And he hasn't failed me. He's my best friend and the joke was on me, because, with my incontinent issues, I didn't think he was going to be able to stick around. The joke? My husband was a direct care worker, who worked with a man with a colostomy bag! Haha!

That was twelve years ago. I would love to say that aging with Spina Bifida has been easy, but it hasn't. I've had more brain surgeries over the past ten years than I have had in my entire life. Frustrating, but comes with the territory. But I am no longer angry about my life and no longer want to be 'like everyone else.' I am proud of who I am and I've come a long, long way. I like my life and I like the tough cookie I've become. I am now a published writer, with two short stories under my belt. I own my own crochet company, The Mad Crocheter, and I am a psychology student, well on my way towards obtaining my Master's degree. Without all the complications, I would never be where I am today.

Magan Rodriguez

Thank you for sharing your story with us, Magan!!

Spina Bifida Awareness: Meet Gavin!

2011-10-28T02:30:00.000-07:00

Today we meet Gavin, through the eyes of his parents!

Family picture after signing adoption papers

Meet our son, Gavin who will be four in December. Gavin is the light of our lives; he is amazing, wonderful, and smart.

Gavin's back before his surgery

Gavin didn’t come to be a part of our lives in the way a typical child comes to be a part of a family. Gavin came to us a foster child when he was eight months old. We took him in to our home knowing absolutely nothing about Spina Bifida, but that didn’t matter because we feel in love with him right away. By the time Gavin was one and a half we had officially adopted him.

In court, signing adoption papers

When Gavin came to us at eight months old he couldn’t do anything. He couldn’t sit-up, crawl, or roll over. We had a long road ahead of us, but Gavin was a go getter and didn’t let anything stop him. Our early intervention program came to our house and worked with him weekly to get him caught up. Over the next few months he slowly but surely stated crawling, standing, and doing things I was sure would never happen.

Shortly after Gavin turned two he began walking with his ankle braces. Thought he wouldn’t walk without a walker but he just up and started walking without any walker. Now he runs and has just mastered jumping straight up from a standing position. This summer he also mastered walking up and down our front steps without holding on to anything and figured out how to pedal his three wheeled bike.

This is how he walked when he first got his braces

We could not love Gavin more if he had been born to us. He is amazing and loves life, having Spina Bifida does not slow him down. He lives a normal, happy healthy life. Thanks for being a part of our family, Gavin, we love you.

Picking pumpkins at the Pumpkin Patch, this is one of Gavin’s favorite things to do

Thank you for sharing Gavin's story with us here!

Spina Bifida Awareness: Meet Alex!

2011-10-27T02:30:00.000-07:00

Today we have a story about a cute little fella named, Alex! Here is what his mother, Holli had to say about him:

I've been reading along with the inspiring stories every day and have been meaning to write one about one of the most important people in my life, my son.

Alex is two and a half years old. He and his twin brother are the light of my life!!! They had a difficult start in this world and Alex more so. We learned during our pregnancy that Alex's spine didn't form correctly and that he had Spina Bifida. I worried so much about what his life would be like, having a disability. Then just a couple weeks later we found out that the boys growth had slowed way down and that my placenta wasn't functioning well causing blood flow problems. We had multiple ultrasounds and stress tests per week and we were told to be prepared to lose both of the boys; That certainly put Spina Bifida in perspective. We gained strength then that we could deal with whatever came our way as long as we had our boys at the end of this journey.

They were born 12 weeks early. Alex was just one pound 10 ounces. The first several months of his life were spent in the Neonatal Intensive care unit hooked up to every piece of machine imaginable. He battled surgeries, infections, and finally to breathe and eat on his own. He showed his true colors right from the beginning, he might have been little but he was a fighter! He didn't just amaze us, but also many of the seasoned nurses and doctors who were initially very pessimistic about his future.

If you meet Alex now two and a half years later, he is no less inspiring. He has a very "thoughtful take it all in" persona when meeting any one new. But it doesn't take long before he's batting his eyes and throwing on the charm.

I feel like Alex is the one who teaches ME every day instead of the other way around. I used to worry so much about whether he would be able to walk one day or not. Somehow I felt that that ONE detail would make or break his happiness. I dreaded the "equipment" coming when he was no longer a baby. At just a year and a half old he got his first wheel chair and his world broke wide open. The very thing I wanted to resist was exactly what gave him his wings. From the very first minute of being in his "wheels" it was clear this gave him freedom. He was free to move wherever he wanted, exploring right alongside his brother, often surpassing him even. He reminds us every day what is important in this life, and what is not. Spina Bifida is a part of Alex's story but its certainly not the whole story!

Their personal blog is: www.ourdoubleblessings.blogspot.com.

Thank you Holli for sharing mister Alex with us!!

Spina Bifida Awareness: A Special Big Sisiter

2011-10-26T02:30:00.000-07:00

Today we get to meet a SPECIAL young woman that is a dear friend's daughter.... words can't describe this darling girl, but April, her mom, comes close! Kaia is big sister to Blake, who has Spina Bifida.

Originally posted on the family blog on 10.30.2008

Kaia is our Gift!

I always worry that Kaia, as the big sister of a special {needs} little boy, will end up feeling slighted when she is older. We have tried really hard to do one-on-one special things with her to help her feel like it is not all about Blake. And, we don't make a practice of using Blake's diagnosis or problems as an excuse for not doing something as a family. {Occasionally we have to, but I see that as a great teaching lesson on compassion and empathy when the situation arises, which I believe all of our children need to learn more of.}

I knew Kaia was always hearing us refer to Blake as our little miracle from God and worried that she wouldn't think she was as important. So as to help Kaia feel that she is just as special to us, I thought long and hard for a sincere sentiment I could use when referring to Kaia. I came up with....'She is our gift from God'. Here's one example why I feel so strongly and sincere about this sentiment.....

Sitting on a bed in a Disneyland hotel, I was cathing our little one year old, Blake. Kaia's birthday was approaching and she was watching me. She said, "I know what I want for my 7th birthday present!" Being at Disneyland, I couldn't even begin to imagine what she had seen that she would want, so without guessing, I simply said, "What gift would that be?" And here was her sweet little 7 year old birthday request....."I want to learn how to cath Blake so that you and Daddy can go to both a dinner and movie without having to come home in between to catheterize Blake." Tears welled up in my eyes and I took her little cheeks in my hands and said, "YOU ARE OUR GIFT FROM GOD."

She learned how to cath Blake that year and has continued to be a big help when in need! She is indeed OUR GIFT FROM GOD and we thank him everyday for both of our blessings

Read more: http://www.funkyvintagekitchenblog.com/2008/10/kaia-is-our-gift.html#ixzz1bNgrQ1Jv

And another post from 4.22.2009

She really is an amazing kid. And a great big sister.

She and Blake had a fabulous time this past weekend. They had so much freedom on her dirt bike. Freedom that once she shared some of the places they went on her dirt bike, made me a little nervous. I am way too cautious of a person at times. They explored ALL of camp. No terrain was too tough for her with a rider on the back, but at the same time she showed extreme care with her little brother on the back.

Kaia has a special way when dealing with Blake. Dave and I can ask, beg and plead with Blake for him to cooperate or change his attitude about going somewhere or doing something. When we are at our wits end, Kaia will usually say, "Mom, Dad, can I try?" Blake and Kaia go down to a bedroom and Blake and Kaia re-emerge happy and willing to participate. I'm not quite sure what she says to him, but she can pretty much talk him into anything. Even out of a bad whiny mood. There are many days I thank my Heavenly Father for sending us Kaia first as a special protector over her little brother. She definitely is part of the plan of keeping our family sane while raising a child with special needs.

And one more thing about Kaia.......she can drive this red mule like nobody's business. She was itchin' to get her hands on the steering wheel and she figured it out quickly. Dave said while she was giving us all a ride, "You know farm kids are better drivers because they have so much experience at the wheel at an earlier age!" Well Kaia, I have no doubt you are going to be an excellent driver. You are a good kid! And we are lucky to have the privilege to raise you!
Read more: http://www.funkyvintagekitchenblog.com/2009/04/my-kaia.html#ixzz1bNj7HcZI

Thanks April for sharing Kaia with us today!!!

What a great big sister she is to your special little man!!

Spina Bifida Awareness: A Note from Misty

2011-10-25T02:30:00.000-07:00

Today's face of Spina Bifida comes from a grown woman who has Spina Bifida. When I saw this I just BAWLED. I pray that I am a strong enough mom, who knows just the right balance of tough love and unconditional love, that SOME DAY my precious son might have just as kind of words for me! This is a picture of the mom all of us SB mom's strive to be! Thank you Misty for sharing your mom, and your fabulous words to her, with us!

Dear Mom,

Thank you for giving me life when “they” said I’d be better off dead.

Thank you for fighting on my behalf when I was too little and weak.

Thank you for loving me even though you were scared.

Thank you for becoming a nurse in our home long before you were ever a nurse at a hospital. I know that must have been in...timidating.

Thank you for learning what all those tubes were for, and where they went, and how they helped me.

Thank you for countless doctor visits and E.R. visits, no matter what time I needed to go.

Thank you for walking up and down the halls of the hospital with me while people gawked.

Thank you for your paranoia about every little thing that didn’t seem right. I know sometimes you thought you looked nuts, but I’m sure it kept me alive more than once.

Thank you for yelling at doctors when they said, “She’s fine,” when you knew me well enough to know I wasn’t.

Thank you for the ugly stares you gave back to people when I was doing my best to learn to walk.

Thank you for being patient when other kids my age were running circles around me. I needed more time.

Thank you for remembering countless medications, and cath schedules, and putting my AFO’s on for me, and dressing me when it took me a little longer to learn.

Thank you for yelling at me when I wouldn’t take care of myself as a teenager (not that it worked…I’m stubborn).

Thank you for making me stubborn. I needed that attitude. I don’t know how I would have made it without my pain in the rear attitude.

Thank you for pushing me to do everything you knew I could do, and I knew I couldn’t. Turns out, you’re pretty smart.

Thank you for letting me do things you were scared of. I know I terrified you sometimes. I had to know if I could ride my bike down that hill at supersonic speed. I could. Fun!

Thank you for making me know that I was worthy of love. I never let a boy tell me anything different. There were a lot of worms, but I dropped them all for something I knew I deserved.

Thank you for cheering at my graduation. If my doctors had it their way, that day wouldn’t have come, but you believed.

Thank you for spending countless hours planning that crazy wedding, yet another thing that wasn’t supposed to happen.

And thank you for forks! LOL! Only my mother will get that one!

Basically, thank you for stepping into an unfamiliar, scary world, that you didn’t sign up for. I appreciate it, and I think you did a great job! I turned out okay!

Love,

Your SB kid

This letter was originally write by Misty to her mom as a tribute to her for Mother's Day and posted on Misty's blog. Thank you Misty for allowing us to re post it!

Please visit Misty over at HER BLOG, she is a very insightful woman and I love reading her words!

Spina Bifida Awareness: Meet Michelle!

2011-10-24T02:30:00.000-07:00

Today we get to meet a woman who is almost my age (Gretchen's) and who has Spina Bifida! That the Internet and places like Facebook put me in contact with people like Michelle is a HUGE blessing in my life!

Meet Michelle!!

I was born in 1971 - the early days of Spina Bifida. I was born with Myelomeningocele (L4/L5) and hydrocephalus. Not long before I was born, most babies with SB died due to either infection caused by their spinal cord not being surgically closed after birth or hydrocephalus. I was truly born at the right time! Another thing that worked in my favor was being born in Chicago and Children's Memorial Hospital in Chicago was pretty much the birthplace for the treatment of babies born with SB. In fact, the Spina Bifida Association of America started off in Chicago with just a few parents. Amazing what a grassroots effort can turn into.

I had about 30 surgeries by the time I was 10 years old. Thankfully, the majority of those were done before age 6 so I don't remember much. Even though I had many surgeries and physical issues growing up, I feel I had a pretty typical childhood. I went to a regular school and attended regular (mainstreamed) classes, had lots of friends, went to summer camp, played with my sisters, fought with my sisters, loved playing with my dolls, and loved to swim. I also went on many trips with my family - California, Mexico, Florida, Ireland. My parents did their best to not let my having Spina Bifida keep me down - even with my leg braces and crutches.

As I grew up, I always knew I would be independent and live on my own. My parents told me so as I grew up, so I had no other frame of thought. I got my first job at 16 being an annoying telemarketer, learned how to drive at 18 and moved out when I was 25. I decided to move to Florida with a friend from high school and so I quit the job I had the time (working in a law firm) and packed up my car and drove down here in January 1997. I have been here ever since! There really is no comparison to the weather from Florida to Chicago. Florida wins hands down!! Moving down here was the hardest thing I have ever had to do. It wasn't (and isn't) always easy, but so worth it. I wouldn't change my decision to move out for anything. I still go back home for Christmas and usually in the summer and my family comes visit me. It's a nice arrangement!

My most recent job I had was at a small family-owned company that made and installed counter tops. I was their production coordinator. Unfortunately, I developed a severe pressure wound 4 years ago that required many lengthy hospital stays, so I had to resign and go on Disability. My 20 year work history worked in my favor though, as I make much more than people who are on Disability and have never worked. My wound is finally healed and I'm hoping to be back working in 2012. I miss working and making my own money!

Life with spina bifida can be difficult at times, but every life is presented with challenges and hardships. Mine just happen to be physical. As strange as it may sound, I am grateful for that. There are many more wonderful things about my life than negative things. I try to remind myself of that fact everyday.

Thank you Michelle for sharing your life with us!

The roller coaster we are on....

2011-10-23T21:23:00.000-07:00

Things have been really off around here for a while. And I haven't given any updates. It's not that I don't want to share what is going on. But rather that I don't want to rain on the SB Awareness parade with my personal struggles right now. On the other hand, I have vowed to be real, authentic and transparent here in all things... So I am going to share what is going on around here!

I am having a few "I HATE Spina Bifida" moments recently.

I don't think ANY mother like to see her child suffer. And I just happen to be able to blame SB for my son's suffering recently.

So... let's bring you all up to speed on what is going on around here.

Two weeks ago tomorrow, Nat went in for a routine dental procedure that he had to go under anesthesia for. He had an allergic reaction to the anesthesia, and went into full respiratory failure when they pulled the breathing tube out. He basically stopped breathing, and then his heart faltered greatly. He flat lined for a few seconds while they reintibated him (he was laying in my arms when all of this happened so I had a very clear view of all that was going on! Heart wrenching!) We ended up in the hospital for the night. He was vomiting blood, not breathing right, had low H2O saturation, and his heart rate was abnormally high.

The next day he seemed fairly stable so they released him to go home. His heart rate was still elevated, but they said that could take a few weeks to stabilize out, and his H2O saturation was still slightly down, but not in a dangerous zone. But he has not been quiet himself since then. He has had a bunch of problems, that all taken alone seem normal for him, but all added up are just wrong.

His current problems include:

~He has been having unexplained headaches pretty much non stop for two weeks. Some of them bordering on the migraine side with him vomiting and seeing lights (he does normally have 2-3 migraines per month).

~He has been battling a UTI, even though he was on a 10 day course of antibiotics to treat it. He also seems to have an irritated urethra due to a little "stubborn streak" he had the week before the procedure. We have had to adjust his cathing protocol to help with this. He finished his antibiotics, yet still seems to have the borderline UTI (for SB folks... he will be crystal clear one time, chunky milk the next 2 or 3 times, then clear again for like 24 hours. This seems to be happening at least once a day).

~ His kidneys are not functioning properly. And are giving him a hard time.

~His right ankle (the one prone to staph and ostio) is swollen, hot and VERY PAINFUL. The painful is concerning everyone because he usually has little to no feeling in this foot. This COULD be due to a change in his braces, but with everything else going on we don't want to completely write it off to that. We are watching this foot closely due to previous history.

~He is still not breathing properly and easily looses his breath or gets winded. This is NOT AT ALL normal for my energetic guy that can run for hours on end.

~Now on top of everything, he is not eating or drinking right for me. That is messing with his bowel management system that we have him on, and I personally think he is bordering on dehydration. Yet I am so hesitant to do a clean out on him with him already down and out. So hard to know what is the right call in the SB world!

Nat's doctor, when looking at all of these things together, feels like the medication that caused him so much trouble in the hospital is still in his system and causing havoc with him. Systems that are normal "weak spots" for Nat (that right foot, his urinary tract, his migraines) are all failing due to the stress on his system. The breathing and lung issues, his Dr feels are directly related to the respiratory failure when the intibation tube was pulled, then reintibabting him so quickly. Dr is hesitant to introduce any new medications at this time, he is unsure how Nat's system will react. So right now Nat is on full bed rest, in his wheelchair, and we are TRYING to convince him to eat and drink.

Needless to say... I have had a rough two weeks, and watching my boy so sick and being able to do so little is TOUGH!

Right now we are hoping and praying that rest and down time will help his body find center again and then get stronger, so in time he should be back to his normal self. But only time will tell.

Prayer is truly the only place of peace I have had in the past two weeks! I have spent an enormous amount of times on my knees! If you are a praying person, we would LOVE your prayer in healing Nat's body.

So, while I LOVE my son, and I am thankful beyond words he is in my life, Spina Bifida and all, I am SICK of the havoc right now. Now I KNOW there are those with SB FAR WORSE off than us, yet I also know that there are those with SB that have it way easier than us too. SB is a big ole spectrum and you can fall anywhere on it at any given time. We are on the hard swing right now, and I am personally DRAINED from it. But I have faith that we will find center again and carry on. I just hope center comes soon....

So that is what is happening in our corner of the world... what is going on in yours???

(Come on, leave a comment, I REALLY DO want to know what is going on with my friends since I have NOT had blog reading time recently!)

Spina Bifida Awareness: Meet Aiden!

2011-10-23T02:30:00.000-07:00

Today we get to meet Aiden!

His mommy is sharing with us:

Here is Aiden’s story (he is my 3 month old son)….

Our beautiful journey with our son, Aiden, who was born with Spina Bifida, began with a 3D/4D ultrasound.

We have two other children(Ashleigh and Andrew), ages 4 and 14 months at the time, and this would be the only way they would have the opportunity to accompany us to an ultrasound to find out our babies gender. I was 15 weeks pregnant at the time and went in hopes of knowing our babies gender. Within minutes of starting the ultrasound I knew something was terribly wrong with our baby, you could see it all over the sonographer's face-she was mostly focusing on our babies head and heart. She asked our mothers to take our children out of the room and informed us that our unborn son (yep, we were able to see he was a PROUD boy!) had serious medical problems that included his head and heart.

We were terrified.

Of course she was not allowed to tell us what was wrong but I left there that day just praying it was something my son could survive.

The next day we had an appointment with Maternal Fetal Medicine and were quickly informed that our son had Spina Bifida and a heart defect. My first question was (since I was not familiar with SB) “Will he survive?” There answer was “in regards to Spina Bifida, of course he will!” but he was still too little to know about his little broken heart.

I was never in shock or upset by his diagnosis of Spina Bifida. I suppose it was partially because the day before I thought my son might die and because we were so unsure about his heart. A few weeks later he had a fetal echo and was diagnosed with a serious heart defect called Tetralogy of Fallot and would need open heart surgery soon after birth. We began our almost weekly appointments and debates on what steps needed to be taken after birth. It was decided that the myelo repair needed to happen first.

After they realized he had multiple birth anomalies we had an amniocentesis to check for chromosomal abnormalities and they came back positive for 22q deletion syndrome (also known as DiGeorge’s Syndrome). 22q has a wide range of symptoms (SB is a rare one) and affects health and learning/social as well. I felt like everything was spiraling out of control and feared what was next. More diagnosis came throughout the pregnancy: solitary kidney, hydrocephalus, suspected cleft pallet(although he does not have that).

We were so nervous about delivery day although it was a miracle in itself that I made it full term with him as I developed polyhydramnios around 7 months of pregnancy with him. But we made it and although the doctors feared he would be on a ventilator immediately after birth and require immediate attention to his heart, Aiden proved them wrong! He came out kicking, screaming, and perfectly pink!

He spent the first two days of life breathing room air (praise God!!!) and had his myelo repair at 2 days old. He sailed through that with flying colors and started eating by mouth the next day. Oh yeah, did I mention the doctors told us during the pregnancy not to expect our son to eat by mouth ;)

At one week old his neurologist decided it was time for a shunt due to hydrocephalus so at 7 days old he went in to surgery for a VP shunt. He was a little ornery recovering from this surgery but within a few days was eating mostly by mouth (because of his heart condition he would wear out easily and would gavage the rest of his feeds) and healing nicely!

Aiden, our big sweet boy, was able to grow strong until 6 weeks old until he required open heart surgery. So on August 26, 2011 we sent our son into open heart surgery scared out of our minds. After six long hours he was sent to recovery doing pretty well. He spent another 3 weeks recovering from OHS and we were finally able to bring our sweet little guy home after 9 weeks in NICU/CICU! What an incredible day that was!

He has now been home for a month and continues to amaze us each day. His strength and determination is incredible. We praise God that he not only eats by mouth since he’s been home but he BREASTFEEDS!!! He no longer requires oxygen, only came home with an apnea monitor and does all of the fun baby things we would expect him to do: eat, sleep, and poop!

We don’t ever look at him as Aiden 22q, Spina Bifida, Hydrocephalus, Tetralogy of Fallot as the doctors see him…he’s just Aiden-cute, cuddly, amazingly perfect gift from God! We are so blessed with our sweet little boy and although I would never wish for my son to be in any pain or face obstacles in this life, I would also be glad to walk this journey a million times over because my heart swells with love and happiness every time I look at his sweet face!

Thanking God every day for our sweet blessings!

Our blog is www.journeywithaiden.com

Thank you Kayla for sharing your precious boy with us!

Fall is GREAT!

2011-10-22T09:22:00.000-07:00

Taking Fall pictures is one of my favorite things to do!

The colors are fabulous, there are pretty things everywhere and it is FUN!

Last weekend some of the ladies from our women's group at church met up at Avila Valley Barn for a picnic...

so the kids and I joined them!

First we peeked around the cute store there.

Then we had a nice picnic.

Audrey DROOLED over the roasted corn sold there.

Then we went on a Hay Ride.

And we wandered around in the pumpkin field.

Audrey was on a quest for the PERFECT pumpkin!

I even let Audrey take pictures. This is her portrait of Miss Brandie (the Children's Director at our church) and her beautiful girls.

When we got back to the main area, I TRIED to get some fun pictures of my kids....

But they weren't cooperating very well!

I called this the best I could get and we headed on home!

I think we are going to have to visit another pumpkin patch soon so I can take more pictures!!

Spina Bifida Awareness: Charlie's Journey

2011-10-22T02:30:00.000-07:00

I (Gretchen) "met" Larry a few years ago when he found my blog in his research for bringing Charlie home, and I have been blessed to call him friend since. I am really happy that he chose to share some thoughts with us about bringing Charlie home, and I hope you enjoy hearing from him! I know I did!

I am often asked why.

Why did you do it?

What made you decide to do this?

Why from China?

What I don’t get asked is “What’s wrong with him?

Why does he walk like that?

My wife and I decided in the winter of 2008 to attempt to adopt a boy from China. We are a mixed family living in Southern California. I am Caucasian and my wife is Japanese. We have two biological children 1 son and 1 daughter. They are 7 years apart in age and there was a spot right in the middle for Charlie, who was referred to us by an adoption agency in Delaware.

Charlie was born in Tianjin China. Tianjin is a mid-sized industrial city one hour south of Beijing, which is the nation’s capital. I left Southern California to pick up our new son in February of 2009. My wife stayed home with our daughter. Our oldest son was in Northern California at college. I kept a journal of our travels in China. Some of the journal I will share with you here.

The first entry describes our first 24 hours together, which we spent in Tianjin in February, 2009.

This 24 hour period is the “Time of harmony” which means, do we get along? How can you honestly tell? He is 13 almost 14, and that’s a clue right there. Of course we get along… …if he does what I say. No really, right now we are getting to know each other. We are doing that in a quiet way. He has a small net-book computer. This was a gift from his foster family. I know he misses them. It is a great leap he is taking to leave what he knows, and go to America where nobody speaks Chinese.

Charlie is spending his time online with his new toy. He is content and I’m ok with it, for now. The jet lag is still with me. It’s harder than usual to shake off. The weather outside is FREEZING! A Southern California boy doesn’t belong in China in the winter. Tianjin is a grimy industrial city. There are smokestacks throwing something up in the air, let’s hope its steam.

We ordered room service for dinner. It’s just too cold outside and I have no idea where to go to eat. Tomorrow we go back to the civil affairs office. This is when Charlie decides if he wants to go ahead and accept me as his new father. If he does, then away we go on with the rest of the adoption. If he decides not to proceed, well I don’t know.... that thought hasn’t entered my mind.

My wife and I both knew Charlie was born with Spina Bifida, however we were not 100% sure of the severity. We received detailed information and medical reports, in Chinese, and had them translated. Doctors here examined the documents. I had a feeling, a hopeful feeling, that we could manage whatever came our way.

When Charlie and I were in China, there was a period of adjustment. I was learning about all of the defenses and methods he had built up over the years to manage his different abilities. He was learning about mine.

…..one stop in our afternoon consisted of going back to the welfare home and settling a few outstanding issues. We pulled up outside the gate of the welfare home and I sensed Charlie’s apprehension. Using our point and hand gesture language I assured him it was a short stop and he had nothing to worry about. Charlie saw the familiar guard at the gate of the orphanage, and was told by the man to be a good boy, and have a good life in California. We went on to the Admin. Offices. A few of his teachers, and admin staff members were there. We took some pictures, and made pleasantries with them.

As we were leaving the relief of the short visit was on his face. I hope it will give him closure, and in the future will settle his mind. I asked him, through translation by our guide Elinor, if he felt there was a difference between the time he left the orphanage with me on the first day, and today. His reply was “on the first day I went and followed because I was told too. Today I WANT to go with you”. This made me tear-up just a little. He added that he is both happy and sad to be leaving this home he has known for all his years. This is a very healthy way to feel and healthy to articulate. He is starting to feel safe with me and that is a very BIG start.

Charlie has Myelomeningocele. His level is S1 thru L 4&5. He had a de-tether operation in July of 2010. This had mixed results; in short it was a push. His cord wasn’t completely de-tethered but it did rise back up some. He does not have hydrocephalus and that’s a good thing. He walks but tires easily and has a wheelchair for distance. He wears AFO’s on both feet. He is scheduled for orthopedic surgery on both feet this December. His bowel and bladder are at times an issue but he has some sensation, and thankfully no kidney reflux.

My wife and I have learned a great deal in the short almost 2 years that Charlie has been with us. It seems as though he has always been with us. He is our child and always has been. I asked the question at the beginning of this essay, and I had partially answered it when I was in China with Charlie.

…I have mixed feelings on leaving Tianjin. It’s Charlie’s birthplace, his world. Perhaps we will return someday. I hope he will, but under totally different circumstances.

In the Buddhist faith one believes that you have lived on this earth before. As you pass through each life experience you build upon your karma. The ultimate achievement is to gain enough wisdom through these life’s experiences to reach enlightenment. Perhaps Charlie was a part of one of my former lives’ or a part of my wife’s and it has taken 14 years for us to find him through the fog of time and distance. Maybe we are just meant to carry him part of the way to a further destination. We move on no matter what now and the hard part of the journey will start once we get home to Los Angeles.

Till then dear friends and family, please comment and see you in a week plus a few days............

We are still on that journey. My family is stronger from this experience. I wouldn’t say that it’s for everyone, but our answer to the question asked at the beginning of the journey was, “Because we can”. It’s not a flippant answer, it’s the only answer that we can truly offer you. It’s our answer that fits the question.

Be well…

The story of Charlie and Larry's family truly touches my heart, and I hope it touched yours too!

Spina Bifida Awareness: Meet Bekka!

2011-10-21T02:30:00.000-07:00

Today we get to hear from Bekka, and her mom Nicole! Bekka is 9 and helped her mom write this.

Meet Bekka!

Hi, all. I'm Nicole, mother to Rebekah, who was born on June 18,2002 with myelomeningocele at the L3-4 level. Bekah and I have enjoyed reading all about others with Spina Bifida and I've asked her if she would like to tell you all about herself, and she said, "Yes!"

Here is what she would like you to know:

~She recently learned how to jump rope, frontwards and backwards. Her record so far is 10 jumps in a row!! Just this morning her jump rope got chewed up by the dogs after she left it in the yard overnight, so now we have to get her a new one.

~She is very good at math.

~She has butterflies and flowers on her braces (AFOs).

~She had a jogging test in PE last week that she was SO nervous about. But, it turns out that she worried for nothing because SHE PASSED!! (had to jog for 3 minutes without stopping).

~Her favorite things to do are making necklaces and bracelets and to READ...and play dressup. :)

~She loves kittens and puppies!

~She has a best friend who is younger than her also named Rebecca, but it's spelled differently (and she doesn't have Spina Bifida). She is very excited because this year they get to ride the school bus together.

Rebekah has been a blessing to our family even before arrival. We found out at 16 weeks gestation that Bekah has SB. We underwent fetal surgery at 21 weeks and Rebekah made her appearance at 35 weeks. As is usually the case with SB, we were very uncertain what to expect when she came, but we knew we'd love and cherish her no matter what excitement, frustration, or worry she brought into our lives. She is the most lovable little thing, always hugging and kissing and touching. :)

We've not had too many issues with regard to complications from SB other than UTIs. The Lord has seen us through all of them.

She has her original shunt and it's long enough that as long as it keeps functioning she won't have to have it messed with as she grows. We've had one scare, but it turns out that even though the docs thought she needed a revision, it was actually working so they canceled the surgery. The Lord saw us through that.

She's had a couple of infections in her knee when she was younger from walking on her knees instead of her feet and getting a wound that wouldn't heal. Thankfully it was simply in the wound and never spread to the bone. It was a long road of recovery for that "little" thing, but the Lord saw us through it.

She wears a hearing aid for hearing loss from otosclerosis, which the doctors told us is not SB related.

A number of years ago she got a burn on the back of her right calf after riding on an ATV. She had her leg resting on the exhaust pipe and nobody realized it, including her, until she got off. The Lord saw us through that.

Knowing that the Lord is going to see us through all of the ups and downs is what has given me strength from the beginning. I can remember being in amazement at the beginning of my pregnancy and the beginning of this journey that the Lord would see me a fit enough mother to bless me with this miracle, and I sit here still today, humbled and grateful every day that he has blessed me so.

Thank you Nicole and Bekka for sharing with us!

Spina Bifida Awareness: Meet Collin!

2011-10-20T02:30:00.000-07:00

Today we get to meet Collin!

My name is Jessie Kickery. I am the very proud mommy of a very active 16 month old baby boy named Collin who has Spina Bifida!

Today I want to start off with when I found out about the Spina Bifida. I felt scared as I had no idea what they where talking about but they made it sound very bad. I also felt lucky I found out with the blood test they do at 5 months pregnant so I had a chance to go to a specialist every 3 weeks for ultra sounds. Yay, I got to see my little boy every 3 weeks and that made me so happy. Even though I had no idea what Spina Bifida was we had great support from an organization and his daddy's mother and my mother.

His birth was the hardest thing I'll ever do. Not getting to hold him for 16 days, but touching him was great. I remember after 16 days they rolled him and I got to hold him and all I could do was cry because he was so beautiful and so strong.

He was born May 23rd 2010 and went home with us June 9th. It was a big day for us, "YAY!! We are going home!!!" All I could do was hold him (Big mistake, lol).

When the the doctors appointments started, I was scared every time we went. I was scarred that they would find something wrong as we had many scares in the NICU of fluid build up on CT scans.We got in to Physical therapy right away and he has had a few kidney issues but it seems now that it has taken care of it's self.

The first year went by so fast and don't really think about Spina Bifida until it's talked about. Other the his AFOs he is very normal. We have been working with PT still and he is now trying to stand by his self and trying to walk. He has little to no feeling in his ankles so he does have to wear his AFOs as much as we can. I guess those make all the difference because he has a lot more balance and stability. He looks so amazing standing when we were told he may never stand. He is just an amazing kid full of surprises!

Thank you Jessie for sharing Colin with us!

Spina Bifida Awareness: Meet Payton!

2011-10-19T02:30:00.000-07:00

Payton's mom, Rachelle shared the following story with us about the early days of her diagnosis, and the pain of the journey right after hearing... I hope that this shows many that they are NOT alone, and there IS light on the path!

Meet Payton!

October 15, 2010 was the best day of my life. That was the day that I found out that I was pregnant – after less than a month of trying. My pregnancy started out so easy – no morning sickness, no cravings or increased appetite, no weight gain until roughly 12 weeks or so – I wouldn’t even have known I was pregnant had it not been for that very faint pink line on the pregnancy test . February 3, 2011 was the worst day of my life. That was the day that spina bifida was confirmed in our precious baby girl. It was also the first time the doctor told us we had the option of “terminating” our pregnancy.

When Pat and I found out that our pregnancy wasn’t as perfect as we had thought, we were devastated. I was furious with God for creating a child who would suffer. I prayed for weeks that He would take her home with Him, where I knew she would not suffer. I swear I cried for weeks on end. We were sent to London to meet with specialists and they too let us know that we had the option of terminating our pregnancy. I admit that for some time I wallowed in fear and sorrow. I entertained the idea of aborting my unborn baby. I was terrified of the struggles she would have to face throughout her life. I wondered if Pat and I would be able to handle the challenges of raising a child with special needs. Would our relationship survive the strain?

Had it not been for Pat, I may have terminated the pregnancy. I would not have my Payton. It would have been the biggest mistake of my life. It almost seems ridiculous now to admit that I was ‘devastated’ when I first found out that Payton would have spina bifida. What was I so afraid of? She brings me so much joy each and every day. Her every smile melts my heart. She continues to grow and amaze me daily. I have learned so much from her. I have learned unconditional love; to appreciate the little things in life; to celebrate diversity. No matter what struggles we may face, there is nothing that would make me regret bringing our daughter into this world.

I felt compelled to share the darkest part of our story in hopes that it will help someone who is going through this or may go through this in the future. Spina bifida is not a tragedy. It has it’s challenges but , by no means, does it define a person.

You can read more from this dear family HERE on their personal blog!

Thank you Rachelle for sharing with us!

Spina Bifida Awareness: Meet An Amazing Family!

2011-10-18T02:30:00.000-07:00

There are not words in my mind to introduce this family adequately...

So I am just going to let Pamala tell their story....

It's hard to believe it's been 23 years since my husband, Kevin, and I heard the word Spina Bifida.

We had been married 3 years and we were wanting to have a baby. We were both college students at the time so when my OB/GYN told me I had a severe case of endometriosis and had to have a laproscopy to have it "fixed" so we could conceive, we didn't worry too much. I went in for the laproscopic procedure and blood and urine tests were done,,,,come to find out I was pregnant!!! We were excited beyond measure!!!

I had the AFP test done which came back negative for neural tube defect and also had two sonograms where all measurements were normal. Devin's hand was over her spine on both sonograms but our doctor said it was nothing to worry about. I went into premature labor 7 weeks early due to pr-eclampsia, When my sonogram was done in the hospital, our daughter still had her hand over her back but she was breech so my doctor had to perform a C-Section.

I thought a c-section was scary enough, but when our daughter was being delivered I heard my doctor yell out this weird word that has become an everyday word for us now and that was MYELOMENIGOCELE!!!!!.......

I was unable to hold her, I had no idea what was going on, but Our God was there the whole time. I got a brief glance at her as they rushed her out of the operating room and for those few seconds our eyes connected and I knew she would be a fighter. Devin weighed 4 lbs 4 oz and was 17 in long.

Our pediatrician was unable to be in the delivery room so a pediatrician that was the specialist at the time for the Spina Bifida clinic was able to explain a little before he rushed off to take care of our baby.

The neurosurgeon was the first to "visit" us after he was interrupted from a golf tournament. I thought he was the devil himself. He had nothing encouraging to say. He said Devin would probably never talk.....she started at 13 months and hasn't stopped yet, he said she would never walk and she started walking with small leg braces at 2 years old. Then basically he told us that since we were poor college students and my husband was a youth pastor on a limited income we shouldn't have ever had her, but since she was here we should think of our options. Was this guy nuts? My first question was "Ok, tell me what she can do? I know we had prayed for her even before I found out I was pregnant."

So we decided to focus on what Devin could do and not what the doctors said she probably wouldn't do.The first thing we focused on was right after her first surgery she could smile and that smile still keeps me going. Besides, Our Lord is bigger than any kind of medical theory or statistics that man came up with.

Our precious baby girl had her first surgery at 19 hrs old to close up her back which we found out later was level 3-4 on her spinal cord. She was off the ventilator even being a preemie after 12 hrs. The NICU kept close watch on her for any sign of hydrocephalus which started being obvious by the 2nd day after they closed her back. When she was 4 days old she had what is called a shunt placed inside her brain to drain the spinal fluid. The way we described what hydrocephalus was with Devin is like a water hose being crimped and it builds up pressure.

We were able to bring Devin home from the hospital when she was 2 weeks old. She was able to go to her daddy's college graduation. Yes, he was able to finish even with her being born in April, his professors worked with him and the nurses in NICU helped him with his final term paper. God is Good at ALL time.

We thought we had strong faith before Devin was born but we had no idea the plans God had for us.

Devin had to have a shunt revision at 6 wrrks, 9 months, 2 yrs, de tethering of the spinal cord at 3 yrs old. Then we noticed her eyes weren't really straight so she had 2 eye surgeries to correct her beautiful blue eyes.

During this time we went to monthly spina bifida clinics in Austin, TX. We actually started to look forward to them, it was a place we could be around people who were going through the same stuff we were. They understood our talk of shunts, CT Scans, VCUG's, renal sonograms, Urodynamics, and hospital stays. Our favorite part was it was like a pageant for all the little girls there. All of us mommies would dress our little girls up that were around the same age and show them off.

On one of our visits, I happened to notice a baby in a stroller with only a diaper on, covered halfway with a very dirty blanket. The woman with him acted mad at the world and wouldn't even look at her baby when he cried. I couldn't take my eyes off this precious baby. We saw him again about 6 months later but with a new woman. She was a foster mother. He was malnutrition and we found out he was neglected physically and emotionally and was left to starve to death in a closet where his birth grandmother found him. I know it had to hurt to call CPS on your own son and daughter in law and that is why I know she has a place in her heart for our Brannon and would have taken him if she could but was unable too.

That next day we saw Brannon's picture in the paper, Wednesday Child, it was called. I showed Kevin the picture and the first thing we thought of is what we had told God when we miscarried our son Micah at 5 months due to a chromosome abnormality. We had told God that we would have taken our child no matter what, we just wanted him to live. Brannon was the same exact age as Micah would have been and it was as if God was saying to us.."did you really mean it?"

I called and got the process started and was told it might take 2 years. We had Brannon Luke in our home permanently in his forever home, 6 months later. His level is S1-2 but has split spine with a bone spur at T12 which was removed, he didn't move his legs until he was 2 years old, has a VP shunt that was revised when he was 12. He has absolutely no paralyzation, no bowel or bladder problems. He was able to start crawling at 3 yrs old and weight bearing. Things were looking good for him to be able to walk but he has a severe case of hip dysplasia and it got to where it was just too painful for him to stand. He uses a wheelchair and Devin started using one when she was 7 for long distances and all the time when she hit middle school because she could get to classes faster.

Devin started dance class,T-ball and piano classes when she was 4 but now after attending two years of college has found her true love of writing music and has had one of her songs copyrighted.

Brannon just completed his first year in Challenge League baseball. His smile is never ending and is our peacemaker of the family. He brags all the time about he was born IN my heart.

All things happen for a reason.

The scripture Romans 8:28 "and we know that all things work together for good for those who love Him" God has a purpose for allowing my husband and I to raise these two masterpieces to bring Him glory.

We prayed for healing so many times and now we are seeing more and more of the story He is is writing for our children. They bring sunlight to every room they enter.

One of their other biggest fans is their sister, Kammie, born right after Devin and right before Brannon. She knew so many medical terms regarding Spina Bifida before she hit 1st grade, it was crazy.

I can't say it's been easy but with God on our side raising Devin and Brannon, we can't go wrong. My scripture for them is Isaiah 40:31 "but those that hope in the Lord shall renew their strength. They shall soar on wings like eagles. They will run and not be weary, they will walk and not be faint"

I know their race isn't over yet but when it is they will be complete...there will be no hole in their spine, there will be no hydrocephalus and shunts and there will be no more spina bifida. Jeremiah 29:11 " For I know the plans I have for you,declares the Lord, plans to prosper you, plans to give you hope and a future." The way I see it, from the minute our children took their first breath, God had a wonderful,magnificent story he was writing for their life, and He isn't finished yet.

pamalamcwilliams@yahoo.com

http://www.facebook.com/#!/phmcwilliams

United by Spina Bifida Group on Facebook

See what I mean??? Isn't that a great family story???

I am feeling SO BLESSED tonight with the stories I am editing and sharing.

To everyone who has shared a story with us, thank you for entrusting us with such inspiration to share!

Thank you Pamala!

Josie's Choir Concert

2011-10-17T20:39:00.000-07:00

A few days ago we joined up with Gramie Sharon and went to watch Josie and the high school chior in a concert. It was a great concert. The visiting choir was wonderful, and the high school was fun to hear.

I especially enjoyed that the concert was given at a local church and tickets were reasonably priced. So much better than shows at the Performing Arts Center, which are ridiculously expensive for families!

It was a late night (as you can tell since Audrey is practically asleep by the end!) but it was nice to see Josie.

Oh! There we go... 4 beautiful faces!

Spina Bifida Awareness: Meet Rikky

2011-10-17T02:30:00.000-07:00

Today we have the special privilege of hearing from both the mom AND the dad of Rikky!! Thank you Rik for answering the call to DADS to share their heart... we are blessed to hear from both of you!!

I am Lizz, wife to Rik, mother of 3 girls, Rachel-16, Abigail-8 Carmen-3, and Rikky-2, who was born with Spina Bifida even though I was taking folic acid when he was conceived and had been taking it for quite awhile even though I wasn't planning on getting pregnant, I was currently breast feeding Carmen and my Dr wanted to continue with prenatal vitamins. Rikky has had a very lucky journey so far, he is very healthy and had his surgery for closure, his VP shunt and left hip. He does have to be cathed but does not seem to have any bowel problems yet. Here is my husband's story first and then mine.

Our Journey of SB with Rikky Foresman

Although I am not much of a writer I will do my best to put my thoughts on our journey in words for you all to hear from a Dad’s prospective. Much of our uncertainties came before his birth so most of my story dwells on this timeline. Here goes:

I remember the day but not the date that we found out that there was something wrong with the pregnancy. I know it was around Mother’s Day weekend because Lizz was more upset that she was going to have to sit through this, what is usually a great weekend, in despair and fear because of the news we received at the doctors office that day.

We went in for a routine ultrasound to see if we were finally going to have the boy that we had been wanting for so long and as the ultrasound tech (which was usually a happy-go-lucky guy) was sitting there quietly looking at the same area over and over again. I began to worry and then he turned and said that he needed to get the doctor. After the doctor looked at the images he asked us to meet him in another room to discuss what they found.

As we waited we began to wonder what it could be and then he came in and said that our baby has Spina Bifida and also Hydrocephalus and that it’s the worst case he had ever seen!! My heart sank and I began to sob! He said that he needed to get us to Geisinger (a larger hospital that specializes in these types of cases) ASAP so that they could discuss our options which would include termination.

As soon as we left the office I called my pastor and we went to his house and prayed HARD and he reassured us (especially me) that God has a plan for us and our baby and that if God doesn’t want him to survive then so be it but in no way are we to try to control whether our child would live or die.

Next was the long waiting game for Geisinger to call and get us in for our consultation. While we waited we researched. I remember sitting there in that room and the woman stating that our child has Spina Bifida and we said “is that it?” and when she said yes we were probably the happiest people to ever hear that our baby had Spina Bifida. AND we got to find out that it was, after all the boy that we had hoped for since that information got lost in the commotion.

Now we can fast forward to the day of the birth…

We had to be there really early for a 1st thing c-section and then got delayed until sometime after lunch but it was worth the wait!! I remember sitting behind that curtain with Lizz and being worried but the second I saw that little boy all worries left as he cried and was breathing!

They laid him down on his belly and showed me the opening in his back (which I have to admit was a little gross) and then rushed him off to the NICU. I don’t want to dwell a lot on the details of the hospital stay except to say that the care my wife and son received was second to none and we met some amazing people in there including the nurse that tended to Lizz in the maternity ward the day of the birth with whom we still keep in contact with.

So, Rikky went in the very next day to have his back closed and then a few days later for his shunt once it was decided that it was needed and then a couple days later home they came!

Life has been very interesting with having to learn how to catheterize and having a physical therapist coming into the home every week but I must say that so far in these the first 2 years I can’t complain about much. Now my wife probably has a bit of a different perspective on things since she is a stay-at-home mom and I work a lot.

Rikky is a normal little boy with one small difference and that is his legs don’t work below the knee. He is smart, witty, funny, handsome and loving which is all I can ask for from any child of mine! Of course, we go to doctor’s appointments on a much more frequent basis with him for check-ups etc… but I guess the most important thing I want everyone to know is that He inspires me everyday!

Mom's story,

Feb 7,2009 I found out that I was pregnant. I was so very surprised! Right away I knew there was something not quite right. I was so scared something was going to happen. I talked about it to my sisters but never said anything to Rik in fear that he would dismiss it and say I was crazy. I had an ultrasound by a midwife around 15 weeks, it was a very old machine and she is not very good at seeing it, but see a "turtle" we did! I was so excited to hear the heartbeat and find out it might be a boy! I have 3 girls already and always wanted a boy! I was so HAPPY!

At 20 weeks Rik and I went for "the" ultrasound that would tell us for sure if it was a boy!

Well it was taking him longer than usual and was very quiet. I knew then, something was wrong, but there is a strong heartbeat so that gives me some comfort. Then he says he needs to get the Dr. Something he has never done before. The Dr pulled us into another room. He said words like Major spine defect, brain damage, skull malformation, still birth, may not be viable to life, lets get you to Geisinger so you can terminate if you choose.

What?

I feel my baby moving.

I have heard his heartbeat.

I am not terminating I don't care.

I would rather spend 5 minutes with my baby then to play God and not get any time with him!

The first thing Rik and I did was go to Kenton, Our pastor that has been with Rik since he was young. I knew he could help us calm down and figure out what to do. Kenton said "lets pray, God will help you through this journey!" That Sunday we went to church, it was Mothers Day, the worst one I have ever had because of not knowing anything! But the entire church embraced me and prayed. I have never felt the Holy Spirit before, but it was there that day!

When we finally got to Geisinger the therapist was telling us "Ok this is Spina Bifida and you will have extra ultrasounds, extra appts, different doctors, a group of doctors, a social worker, blah blah" Rik and I kept waiting for her to drop the horrible news. I finally said "so, what is wrong with my baby?" She says, "your child will have spina bifida." Rik and I looked at each other then looked at her started laughing with joy.I said "Is that all? I thought he wasn't going to live! We can handle that! OUR BABY WILL LIVE!"

And live he does.
There is nothing Rikky won't be able to do if he wants to!
He is such a charmer.
He can bring the biggest meanest man to his knees and put a smile on their face.
He is loved by anyone who meets him!
He is very happy and loves to give Kisses!

He has the best big sisters who totally spoil him!
His 3 yr old sister Carmen will come to him when she needs soothing for a hug!

He is my boy and he makes my heart sing,

What a miracle he really is!

Thank you Rik and LIzz for sharing your stories with us!

Get Your Serve On, Post 2

2011-10-16T14:08:00.000-07:00

So I kinda left you all on the edge of a cliff yesterday, hu?

Sorry about that...

I have this THING for posts that are too long, and if I did this all together it would be WAY TOO LONG.

So please forgive me!

One of the things that I decided through my prayer is that EVERYONE deserves good food, and a hot meal. I have taken a few different actions on this point.

In March I joined the Least of These team at our church. The Least of These, at that time provided meals twice a month at the local homeless shelter. My contribution to this effort became making 150 desserts for the meals twice a month.

Each time I would try to make something appealing, homemade, and a touch healthy!

I enjoy taking surplus foods and making them into something tasty... and the reports I get back from the servers is that the folks getting them enjoy it too!

I also try to make it a family event, and the kids help out too!

In about June we added the homeless in the town that our church is located in (the shelter is in another town, about 15 miles away). We would just make a little more and set some aside for the people in our community. We would go down to where they camp and feed them there.

For a LONG time these men and women have been on my heart.

Just in the past month our church has received permission to feed these people each week. This feeding would only be 15-20 meals each Friday. It really is not worth pulling the whole Least of These team together for this few meals, and these folks have really been on my heart. So I volunteered to put the meals together on the weeks that we are only feeding in our town. This past Friday was the first time my family and I did this.

So I used a tray of enchiladas that were left from the feed before (we froze them of course, and I reheated them for this week), and the kids and I added:

Spanish Rice

Beans

Apples

Juice Boxes

We packaged the food up to stay warm and the rest in bags to stay cool and then headed down to where they would meet us.

The people were so kind and so thankful. It was a good time of fellowship and sharing Christ's abounding love. Audrey really enjoyed letting her light shine and talking to people.

After a bit we headed out and let them enjoy their meals in peace, but so thankful that we could provide a simple hot meal for them and shower them with a bit of love. I am also so thankful for the Lord's provisions in my life, for without His constant blessings my children and I could be right there too!

Along the lines of providing food, our Least of These team recently participated in the local Hunger Walk. We are able to purchase food at the local food bank for 14 cents a pound to distribute to the homeless and struggling in our community. The Hunger Walk is to raise awareness of the plight of the hungry in our communities, but it is also a way for us to raise funds for our account at the food bank.

Nathaniel and I, along with Pastor Randy, maned the refreshment stop, where we got to hand out water and goodies to the walkers and be a source of encouragement. This was a great task for Nathaniel, as I don't think he could have done the walk with the hills involved, and I wasn't looking forward to pushing his chair up those hills!

Audrey participated in the walk with Susan, who is the director of the Least of These ministry at our church. I was so proud of her, she walked the whole 2 miles happily and let her little light shine on!

It was a great day of fellowship, bringing awareness to an important cause and taking a stand for what we believe to be important. Even if it was a simple task, I still feel that SO MANY MORE could have taken a few hours out of their afternoon and participated, so I was proud of my kids for doing this! An added bonus was that Audrey got her picture in the local paper!

The other area I have been working in is not done yet, but the seeds have been planted and we are watering them!

It is very heavy on my heart to use the surplus groceries in the area to provide food to those that are making ends meet but just barely. Another local church is currently doing this, but they are small and the need is taxing on them. I would REALLY like to join forces with them and provide at our church too. Each church could be open one day a week and we could bless and serve more people. This is still in the works, as we at my church are still seeking more refrigeration and freezer storage on grounds, and the other church is considering how this would best work. But I am in deep prayer over it, and if you would like you could join me! I would LOVE to see this up and going before the winter and holiday season hit too hard.

As I said in the first Get Your Serve On post, I do NOT share these things to bring glory to my children and I, but more to encourage you! There ARE things in your community that you can do to share the love of Christ and be his hands and feet, no matter WHO you are or what you are dealing with.

What have you done recently to Get Your Serve On???

I will be back tomorrow with the final post in this go round of our OTHER service project we have been working on.... can't wait to see you again!

Spina Bifida Awareness: Meet Tanner!

2011-10-16T02:30:00.001-07:00

Today we get to meet an awesome little guy named, Tanner!! Here is what his mom Star has to say about him:

I remember it like it was yesterday. Routine ultrasound on 7/24/08 - scan ws going good and then the tech got real quiet and said she would be right back. The doctor then came in and said that my new baby boy growing inside me has spina bifida. What he said next, I will never forget. He said "Your baby has spina bifida, he will have no quality of life, when would you like to abort?"

I first felt shock, and disbelief. But the disbelief soon turned into massive sorrow. I don't think I've ever cried so hard or long in my life! He is my first child, so I was already scared, but now I'm terrified. We were offered termination many times, and each time we said no. We were going to let God decide.

There were times I blamed myself, or thought God must be punishing me for something. I spent many sleepless nights crying and agonizing over all the unknowns and what-ifs.

I tried so hard to put up a strong front and tell myself that there are worse things that could happen to my son. Trying to convince myself that I could do it, and it won't be as hard as the doctor's say it is. Or at least I'm hoped that it wouldn't be.

Csection was scheduled for 12/18/2008, but Tanner decided to come 3 days earlier on 12/15/2008. Turning the scheduled csection into an emergency one! Already showing off his stubborn side.....

The hardest part was that he would be transferred to the children's hospital while I stayed at the birthing hospital. I got to spend 6 blessed hours with him and hold him for a couple of minutes before they took him away.

Tanner was 14 hours old when he had his back surgically closed. He had his first VP shunt placed at 9 days old. He also got his first set of casts to for his club feet at 11 days of age. He spent 14 days in the NICU, including his first Christmas, and then we were able to take him home!

Tanner had 4 addtional surgeries by the time he was 7 months old, but none of that has ever slowed him down! He also has had casts on his feet a total of 18 weeks so far. He sat independantly at almost 9 months old, army crawled at 11 months old, 4-point crawled at 12 months, and pulled to stand at 13 months!

Today Tanner is almost 3! He is smart, outgoing, funny, cute, strong, stubborn, and courageous! He never lets anything get him down! He talks up a storm, and will copy anything you say! He still primarily crawls everywhere, but is learning to take steps in a reverse walker. He also gets his first wheelchair on Monday 10/17/11! He is going to be a big brother in November, and will be starting preschool in January.

As I look back on our journey, I honestly wouldn't change anything for anything! Tanner is who he is, and spina bifida is just a small part of him! He lights up our life with his sunshine, and is our little miracle from God. The struggles have made the triumphs so much better!

Thank you for sharing Tanner with us, Star!!
If you would like to share your story with us, we still have a few more spots open so please feel free to share away!!

Get Your Serve On, Part 1

2011-10-15T10:13:00.000-07:00

About a month ago, on a blog that I read all the time (but seldom ever comment on so I bet Patrice doesn't even know who I am!) a post REALLY struck me in the heart. You can read it HERE.

Patrice and her husband Matt are kindred spirits to me in some ways I think. They have their plate VERY FULL with the care of their special son, but yet they still find time and room in their hearts to serve their God and their community. I find myself often overwhelmed with care for my kids in our situation, yet my heart yearns to serve my Lord and his people. When I saw her challenge I KNEW God wanted me to participate but wasn't sure HOW. Over the next few days, I will chronicle the journey I have been on since joining Patrice in Getting Your Serve On! I KNOW that Patrice asked for ONE blog update... but I am bending the rules! It would just be WAY TOO LONG in one post. Please forgive me!

There is one thing I want to make VERY CLEAR....I am NOT writing these posts to bring glory to myself. Just to chronicle my journey, and hopefully share hope. If I can do it with all we deal with daily, I am SURE ANYONE can find a small way to serve too!

So here goes......

If you know anything about me, you know my heart’s passion is PEOPLE and SERVING. I also happen to love cooking! Although I am the first to admit that I highly dislike large groups of people, I do love to love on people. A while back one of the blogs authors I read regularly put a challenge out there for her readers to join her in to Get Your Serve On. At the same time, in church we were going through a series on using the gifts God has given us to reach our world. This challenge and series came at a very timely time for me as my heart had been leading me to some reform, and I decided to join in. In thinking and praying on how exactly I planned to Get My Serve On I focused on a number of things.

What’s My Passion???

One thing I have learned through the years is that it is counter productive to serve if the area you are serving is not your passion. It is my belief that if you are serving in an area to just serve then your time and energy is dry, and I don’t believe that God called us to dry serving. It is also my belief that when you follow the passions God has put in your heart, then He will lead you and guide you and bless the service!

With this in mind, I spent a few weeks in deep prayer over what exactly is my passion. I mean I know I love people. I know I want to serve my community. And I know that I do that. But I really felt I needed to focus, after all my community can be quiet LARGE if I am considering serving them all! So where is the TRUE passion of my heart?

Through this prayer I have come to some conclusions. My heart is passionate for those walking the road of struggle and strife. There are many walking this road, for many reasons, so I asked God to clarify or narrow that vision down and this is what I have heard in my heart:

Many walk the tough rough because of choices that they have made and I have heart for those people. For me, it is always hard to see fellow humans go without what I consider basic needs (shelter, food, work, basic provisions).

While I have heart for these people, I REALLY have HEART for the people that walk the road of struggle that they seemingly have no control over. To me some, example of those types of people are:

The families that have disabled or critically ill children

For the most part, these families are dealt a hand no one ever expects to be dealt through no cause of their own. Many of these families deal with financial burdens that are overwhelming, in addition to the constant care of their child or children. Most of these families have little to no community support. And while most of these families struggle daily, most of them do not qualify for public assistance because those programs do not take into account the extraordinary expense of their plight. I could go on and on about how this group struggles daily for the little things, but I won’t do that to you, let me just say these are people that are often over looked and struggle daily.

The people who have been hit hard by the current economy

It seems that people are just struggling so much more recently, and it is so hard to make ends meet for many people. Many times there are families working their tails off to make ends meet and they are falling just short. Many of these people are not spending foolishly or doing anything wrong per say, but they just can’t make it. And the thing that makes me crazy is that there is NO HELP for these people really out there! If you are working hard and trying, then you don’t qualify for many assistance programs, if you have a home, but are just short on the rent no one will help you until you get a delinquency notice. The problem with this that people have to get so far behind that it is near impossible to dig out in order to get help… kind of counter productive if you ask me! So many times these people just need a little hand up but those are so hard to find!

People or families striving to overcome the evils of our society

When I say this I mean domestic violence, abuse, addiction, victims of dysfunctional families, etc.

There are many who cling on who have been negatively affected by these things, and often fitting the profile to access programs can be difficult. There are plenty of programs for victims of PHYSICAL domestic violence, but even the law enforcement won’t help you if you are not getting beat! There are lots of programs for drug and alcohol addiction, but if someone in your family has a different addition our society downplays the effects of that addiction. Sexual addicts, pornography addicts, gambling addicts…. They all have same destructive habits and patterns of any addict and they all destroy the family foundation.

Once God helped me clarify WHO I wanted to bless, then I asked him to lay it on my heart of HOW I could bless these folks. I had an idea of what I wanted to do, but I wanted to make SURE it was the plan and path God wanted me on. Through much prayer and study, I do believe that this path was confirmed!

I believe that EVERYONE deserves and needs an affordable food supply, and meals.

I also believe that certain populations need education and hope provided for them.

Please come back tomorrow to see how God would have me serve in these areas!

(okay... so it's not so nice of me to leave a cliff hanger like this... but the kids are READY to go on a picnic! I promise ... I have pictures and updates on our sevrvice projects... tomorrow!)

Spina Bifida Awareness: Meet Kasey!

2011-10-15T02:30:00.001-07:00

Today we meet sweet little Kasey!! here are a few words from her mom, Marie:

My name is Marie and I'm the mother of a beautiful 3 year old daughter who is living with Spina Bifida.

I, like most parents of children with SB, can remember the day I found out about Kasey's Spina Bifida like it was yesterday. I was 18 years old and 32 weeks pregnant. I had my best friends mom with me at my 32 week appointment because I had just switched OB's and wanted her to be there with me so she could see my princess on ultrasound! Even after the ultrasound when the ultrasound tech told me that they wanted me to come back in a few hours- I was not too worried. I thought maybe it was standard procedure for new patients that were as far along as I was. A few hours later though, I was sitting on the exam table bawling my eyes out. I had never heard of Spina Bifida before. My best friends mother drove me home as I just sat in the front passengers seat crying. She had to help me explain to my dad what was going on and that the next day I had an appointment 2 hours away to learn more. Of course, the maternal-fetal specialist gave me the worst case scenario. He told me my princess would be a "vegetable" because of the amount of fluid on her brain and that she wouldn't have much of a life. Thankfully my insurance decided to send me to a different specialist that was even farther away after that appointment. They had me go to Vanderbilt to see the Maternal-Fetal Specialists there. Those specialists were not as doom and gloom! However, I was still worried. I was only 18 and was going to be a single mother. I kept thinking that maybe it was something I had done that caused this although all the doctors kept telling me that it was not my fault in any way.

I was scheduled to have a c-section on August 4, 2008. Of course, even in the womb, Kasey had different plans. The morning of August the 3rd, I went into labor. My water broke and so I hopped in the car with my best friend and we headed out on the 3 hour drive. However, half way there we had to stop at the local ER because my contractions were so close together and they needed to take me by ambulance to Vanderbilt. At 2:15 p.m. on 8/3/08, my beautiful little girl was born. I got to give her a quick kiss on the forehead before she was whisked off to the NICU. I was unable to go see her until the next day when I had recovered better so my father saw Kasey before I did. I still remember him coming back to my hospital room with tears in his eyes and telling me what a beautiful angel she was! Kasey had her back lesion closed the day after she was born and her shunt put in 2 days later. Her lesion was from T11-L2 and her hydrocephalus was pretty severe.

Kasey is now 3 years old. I'm married to a wonderful man that she knows as daddy and until last week, she had only ever had those two surgeries shortly after birth. A few months ago we started noticing some changes. One of her feet started turning in and her legs started getting tighter. Her bladder function started changing and when I discussed it with her urologist he said he wasn't worried because it was for the better (his opinion, not mine but thats a completely different story!). We made an appointment to see Kaseys orthopedic surgeon to find out if there was something going on in her legs causing the changes and his x-rays came back fine. He sent us for an MRI so we could get answers. After the MRI we had to wait a couple weeks to get in with him for an appointment to find out answers. The MRI report said that she had syrinx and a Chiari malformation. We knew she had a Chiari malformation but we did not know about the syrinx. So, we then made an appointment with her neurosurgeon. A few weeks ago we saw him and he said the syrinx was minor, but Kasey did have significant tethered cord. He told us we had to decide whether to operate on it or not. We made the decision to go ahead and have it operated on so that she would not lose more function. Last week, on October 6th, Kasey had her 3rd surgery- a tethered cord release.

I knew that recovery would be hard. However, I didn't realize how hard it would be for all of us. Keeping a 3 year old flat on either her back or her belly is a challenge. I think the worst part is when she cries because she's uncomfortable. In addition to that, a month ago Kasey became a big sister! Despite all the challenges that Kasey has and will continue to face, I do not think I would change a thing. She teaches me something new each day and I admire her courage and determination. Honestly, she's the strongest person I know! She has touched in some way each and every person she has met. She has changed me and made me a better person. There are days that I do not feel like I am only 22 years old though!

Blog url: http://thelongroadbeforeus.blogspot.com/

Thank you, Marie for sharing your beautiful little girl with us!!

Spina Bifida Awarenes: What IS Spina Bifida??

2011-10-15T02:30:00.000-07:00

So we are half way through the month of October, which is also Spina Bifida Awareness Month.

Have you enjoyed meeting people and seeing the faces of Spina Bifida? I sincerely hope so, because I want to encourage people who are just receiving the news, that there IS hope, and your child WILL be a blessing!

At the same time, I know that there is a GREAT DEAL of question out there as to what Spina Bifida IS, and how it manifests. The one thing that frustrates me to NO END is that there is no constant in Spina Bifida, it is different in EVERY person with it, but there are some basics. Tiffany did an AWESOME job of gathering those basics and writing the following article, which I would like to share with you today, in hopes that it will help you, my dear friends and family, better understand what exactly Spina Bifida is! It is a fairly long read, but I hope you will take the time (5 minutes or so) to read it and gain some knowledge, because I FIRMLY believe that knowledge is power!

Spina Bifida is a birth defect that affects the lower back and, sometimes, the spinal cord. It is one of the most common birth defects in the United States, affecting about 1,500 babies each year (1).

Spina bifida is the most common of a group of birth defects called neural tube defects (NTDs). The neural tube is the embryonic structure that develops into the brain and spinal cord. The neural tube normally folds inward and closes by the 28th day after conception. When it fails to close completely, defects of the spinal cord and vertebrae (small bones of the spine) can result.

How does spina bifida affect a child?

There are three forms of spina bifida:

1.Occulta: In this mildest form, there are usually no symptoms. Affected individuals have a small defect or gap in one or more of the vertebrae of the spine. A few have a dimple, hairy patch, dark spot or swelling over the affected area. The spinal cord and nerves usually are normal, and most affected individuals need no treatment.

2.Meningocele: In this rarest form, a cyst or fluid-filled sac pokes through the open part of the spine. The sac contains the membranes that protect the spinal cord, but not the spinal nerves. The cyst is removed by surgery, usually allowing for normal development.

3.Myelomeningocele: In this most severe form, the cyst holds both the membranes and nerve roots of the spinal cord and, often, the cord itself. Or there may be a fully exposed section of the spinal cord and nerves without a cyst. Affected babies are at high risk of infection until the back is closed surgically, although antibiotic treatment may offer temporary protection. In spite of surgery, affected babies have some degree of leg paralysis and bladder- and bowel-control problems. In general, the higher the cyst on the back, the more severe the paralysis.

What causes Spina Bifida?

The causes of spina bifida are not completely understood. Scientists believe that both genetic and environmental factors act together to cause this and other NTDs. However, 95 percent of babies with spina bifida and other NTDs are born to parents with no family history of these disorders.

Who is at risk of having a baby with Spina Bifida?

Anyone can have a baby with spina bifida. However, couples who have already had a baby with spina bifida or another NTD have an increased risk of having another affected baby. A couple with one child with spina bifida usually has about a 4 percent chance of having another affected baby, and a couple with two affected children has about a 10 percent chance of having another affected baby. Similarly, when one parent has spina bifida, there is about a 4 percent chance of passing the disorder on to the baby. Couples who have had an affected baby or have a family history of NTDs should consult a genetic counselor to discuss risks to their future children.

In most cases, spina bifida occurs by itself. However, sometimes spina bifida occurs as part of a syndrome with other birth defects. In these cases, recurrence risks in another pregnancy may vary widely.

Women with certain health conditions are at increased risk of having a baby with spina bifida. These conditions include:

•Obesity
•Poorly controlled diabetes
•Treatment with certain anti-seizure medications

Women with these conditions should consult their health care provider before pregnancy about steps they can take to reduce their risk of having a baby with spina bifida. For example, they can achieve a healthy weight before pregnancy, control their diabetes, change anti-seizure medications and take folic acid (see below).

Spina Bifida and other NTDs occur more commonly in some ethnic groups than others. For example, NTDs are more common in Hispanics and Caucasians, and less common among Ashkenazi Jews, most Asian ethnic groups and African-Americans.

How is Spina Bifida treated?

•Occulta: This condition usually requires no treatment. Most individuals don’t know they are affected, unless the defect is diagnosed during an X-ray for some other reason. Occasionally newborns are diagnosed with this form of spina bifida if they have a dimple or other marking on their back. In some cases, these babies may need to be evaluated for spinal cord abnormalities that could eventually result in complications, such as weakness or numbness in the legs and bladder problems. Occasionally surgery is recommended to prevent these problems.

•Meningocele: This defect is repaired surgically, and affected babies usually have no paralysis.

•Myelomeningocele: This form of spina bifida usually requires surgery within 24 to 48 hours after birth. Now there are also options to have this repaired before birth, but those surgeries are still very rare. Doctors surgically tuck the exposed nerves and spinal cord back inside the spinal canal and cover them with muscle and skin. Prompt surgery helps prevent additional nerve damage and infection. However, nerve damage that already has occurred cannot be reversed. Soon after surgery, a physical therapist teaches parents how to exercise their baby’s legs and feet to prepare for walking with leg braces and crutches. Many children with a defect in the lower spine can walk with or without these devices, although most children with a defect high in the spine require a wheelchair.

What medical problems occur with Spina Bifida?

Common medical problems include:

•Hydrocephalus: About 70 to 90 percent of children with myelomeningocele develop hydrocephalus, a build-up of fluid in and around the brain. Cerebrospinal fluid cushions and protects the brain and spinal cord. When the fluid is unable to circulate normally, it collects in and around the brain, causing the head to be enlarged. Without treatment, hydrocephalus can cause brain damage and mental retardation.

Doctors usually treat hydrocephalus by surgically inserting a tube called a shunt that drains the excess fluid. The shunt runs under the skin into the chest or abdomen, and the fluid passes harmlessly into the child’s body. A newer surgical procedure called endoscopic third ventriculostomy creates a new pathway for draining cerebrospinal fluid. This procedure may be recommended for some children older than 6 months, including some who experience shunt malfunctions.

•Chiari II Malformation: Nearly all children with myelomeningocele have an abnormal change in the position of the brain. The lower part of the brain is located farther down than normal and is partly displaced into the upper part of the spinal canal. This can block the flow of cerebrospinal fluid and contribute to hydrocephalus. In most cases, affected children have no other symptoms. But a small number develop serious problems, such as breathing and swallowing difficulties and upper body weakness. In these cases, doctors may recommend surgery to relieve pressure on the brain.

•Tethered Spinal Cord: Most children with myelomeningocele, and a small number with meningocele or spina bifida occulta, have a tethered spinal cord. This means that the spinal cord does not slide up and down with movement as it should, because it is held in place by surrounding tissue. Some children have no symptoms, but others develop leg weakness, worsening leg function, scoliosis (curvature of the spine), pain in the back or legs, and changes in bladder function. Doctors usually recommend surgery to release the spinal cord from surrounding tissue. After surgery, a child should return to his usual level of functioning.

•Urinary Tract Disorders: Because of nerve damage, individuals with myelomeningocele often have problems emptying the bladder completely. This can lead to urinary tract infections and kidney damage. A technique called intermittent catheterization, in which the parent or child inserts a plastic tube into the bladder several times a day, is often helpful. Children with spina bifida should have regular care by a urologist (a doctor who specializes in urinary tract problems) to help prevent urinary tract problems.

•Latex Allergy: According to the Spina Bifida Association (SBA), many children with myelomeningocele are allergic to latex (natural rubber), possibly due to repeated exposures during surgeries and medical procedures (4). Symptoms include watery eyes, wheezing, hives, rash and even life-threatening breathing problems. Doctors should consider using non latex gloves and equipment during procedures on individuals with spina bifida. Affected individuals and their families should avoid latex items often found in the home and community, such as most baby bottle nipples, pacifiers and balloons. A list of safe and unsafe items is available from the Spina Bifida Association.

•Learning Disabilities: At least 80 percent of children with myelomeningocele have normal intelligence. However, some have learning problems.

•Other conditions: Some individuals with myelomeningocele have additional physical and psychological problems, such as obesity, digestive tract disorders, depression and sexual issues.

With treatment, children with spina bifida usually can become active individuals. Most live normal or near-normal life spans.

Can Spina Bifida be prevented?

Some research shows a B-vitamin called folic acid can help prevent spina bifida and other NTDs. Studies show that if all women in the United States took the recommended amount of folic acid before and during early pregnancy. It is important for a woman to have enough folic acid in her system before pregnancy and during the early weeks of pregnancy, before the neural tube closes.

The March of Dimes recommends that all women of childbearing age take a multivitamin with 400 micrograms of folic acid every day before pregnancy and during early pregnancy, as part of a healthy diet. However, a woman should not take more than 1,000 micrograms (or 1 milligram) without her provider’s advice.

Women who already have had a baby with spina bifida or another NTD, as well as women who have Spina Bifida, diabetes or seizure disorders, should consult their health care provider before another pregnancy about the amount of folic acid to take. Studies have shown that taking a ten-fold larger dose of folic acid daily (4 milligrams), beginning at least 1 month before pregnancy and in the first trimester of pregnancy, reduces the risk of having another affected pregnancy by about 70 percent.

Can Spina Bifida be detected prenatally?

Health care providers routinely offer pregnant women screening tests to help identify fetuses at increased risk of Spina Bifida. These screening tests include a blood test called the quad screen and an ultrasound. The blood test measures the levels of four substances in the mother’s blood to identify pregnancies at higher-than-average risk of Spina Bifida and other NTDs, as well as Down syndrome and certain related birth defects.

If the screening test suggests an increased risk of spina bifida, the health care provider may recommend additional tests that are accurate in detecting severe Spina Bifida. The tests are a detailed ultrasound of the fetal spine and amniocentesis. A detailed ultrasound can help determine the seriousness of Spina Bifida and whether certain complications are present. In amniocentesis, the doctor inserts a needle into the woman’s uterus to take a small sample of amniotic fluid. The fluid is sent to a lab to measure levels of alpha-fetoprotein (AFP) in the fluid. An abnormal amount of the protein in the fluid is associated with Spina Bifida.

What are the benefits of detecting Spina Bifida before birth?

When Spina Bifida is diagnosed early in pregnancy, women can consult with their health care provider to learn more about the disorder and to consider their options. For example, they can plan for delivery in a specially equipped medical center so that the baby can have any necessary surgery or treatment soon after birth. Now the option of prenatal surgery is also available if the condition is detected early enough.

Parents and doctors also can discuss whether a vaginal or cesarean delivery would be best for their baby. Fetuses with myelomeningocele are more likely than other babies to be in a breech (feet-first) position. A cesarean delivery is generally recommended for these babies. Some doctors may recommend a cesarean delivery for babies with myelomeningocle who are in a normal head-first position, especially if they have a large cyst. One study found that a planned cesarean delivery can reduce the severity of paralysis in babies with myelomeningocele; however, several studies found no reduction in paralysis in babies delivered by cesarean.

More than 400 babies have undergone experimental prenatal surgery to repair myelomeningocele before birth. This approach is based on the idea that early repair (between the 19th and 25th weeks of pregnancy) may help prevent damage to exposed spinal nerve tissue in the womb and reduce paralysis and other complications. Preliminary results suggest that children who have prenatal surgery have improvements in the Chiari Malformation and may need a Hydrocephalus shunt less frequently, but their bladder and bowel function do not appear to be improved. One study found better-than-expected walking ability in toddlers, but other studies did not. This procedure poses surgery-related risks to mother and baby and puts the baby at high risk of premature delivery (before 37 completed weeks of pregnancy). Prematurity increases the risk of health problems during the newborn period and lasting disabilities. Doctors do not yet know whether the benefits of prenatal surgery outweigh these risks.

To find out whether prenatal or postnatal surgery is more effective, the National Institute of Child Health and Human Development (NICHD), a part of the National Institutes of Health (NIH), is conducting a study to compare the results of both types of surgery in 200 babies with myelomeningocele. Half of the babies undergo surgery before birth, while the other half have surgery shortly after birth. The surgery is being carried out at three major medical centers: Children’s Hospital of Philadelphia, the University of California at San Francisco and Vanderbilt University Medical Center in Nashville. More about this research is available at the study Web site or (866)-ASK-MOMS (866-275-6667).

Is the March of Dimes conducting research on Spina Bifida?

Several March of Dimes grantees are searching for genes that may contribute to Spina Bifida and other NTDs to develop new ways to prevent these disorders. Others are seeking a better understanding of how folic acid prevents NTDs, to make this treatment even more effective.

The March of Dimes is a member of the National Council on Folic Acid, an alliance of organizations working to promote the benefits and consumption of folic acid.

Where can families find additional information on Spina Bifida?

More information is available from:

•Centers for Disease Control and Prevention (CDC)

•American Academy of Pediatrics (AAP)

•Spina Bifida Association (SBA)

Thank you for taking the time to read this, I hope itgave you a better understanding of what Spina Bifida is!

Come on back tomorrow, when we have another dear friend to introduce you to!

Spina Bifida Awareness: Meet Emmett!

2011-10-14T02:30:00.000-07:00

Today we meet mister Emmett!! Here is what his wonderful mom, Charmaine had to say about him:

It is funny the things that remain static in your memory during the most traumatic and the most wonderful events you will ever endure. It was a cold, wet, rainy November day and we were so excited, like every new parent’s should be. We went for the first ultrasound, John and I were guessing the babies sex when she left the room. She came back in, and said there were some anomalies. We had a second ultrasound that day. This one with all the bells and whistles every mother wishes they could get, including a print-out of the baby. This was supposed to be a consolation I suppose, for the terrible news they had to bestow on us. First they showed us where and what the defects were. Hydrocephalus and clubbed foot. Then they showed us the opening: a black and white spec on a sterile screen. Then they showed us his face again……

His hands were up over his face and remained like this through-out the pregnancy. I was instantly in love. Whatever the Doctor said to us, sounded muffled and almost appeared like background noise. That night it was all we could do, read information, layer ourselves in print, read worst case scenarios and view the pictures. Fear over-swept us for hours, then suddenly, as quickly as the fear came, the fear went. We stopped reading and looking at everything, and decided to live it one day at a time. I am so glad we did!

Emmett Logan Francis was born March 19th, 2007; three weeks before his Easter due date. His arrival came swiftly, water broke and one contraction; then an emergency c-section. I won’t lie to you. My first memory of Emmett outside of the womb is not a happy memory; it was frightening to say the least, all of the cables, wires, needles, beeping, the nurses coming and going. I just wanted to hold him, to touch him without a sheath of plastic between us. It felt like he belonged to everyone else, that he belonged to all of the Drs and hospital staff. I never prepared myself for this.

We left for home on April 3rd and returned on April 8th, Good Friday. Emmett’s shunt was not draining properly, they monitored him for a couple of days, and everything turned out fine. What a relief! Only to return around a month and a half later: this time I was changing Emmett’s diaper and noticed something poking out of his scrotum. His shunt tube had migrated down through a hernia into his scrotum on the left side. We were told the chances of this occurring again were slim to none. One year later we were back, he had one on the right side of his scrotum.

We pushed forward, months of Early Intervention, physio, and OT later, he was holding his head up, and he was trying to squirm around. With the assistance of many hours in a Bumbo chair. Emmett finally began to sit up on his own. Our Orthopedic Surgeon at the time told John and I that he thought “he’ll never weight bare, so give him the caster cart so he can get used to wheeling”. We were so insulted. We insisted on the surgery for Emmett’s clubbed foot. Thank god we persisted; Emmett began to stand with assistance at two years eleven month. If at first you don’t succeed try, try again. Emmett was tenacious and persistent, and had a very strong motivator come along to push his need for mobility….

During the month of October 2007, just seven months after Emmett’s birth, we were given a surprise. We were pregnant again. Naturally this was not planned, but welcomed. I had been continuing my prenatal care through-out the past six months, our first ultrasound rolled around and we found out we were going to have another boy, and this one did not have any anomalies. Liam Cayce Francis was born on July 17th, 2008, nearly eight pounds of baby with huge hands and feet, sixteen months after Emmett’s arrival.

During the months after Emmett’s surgery he persisted and began to army crawl (cast and all). The entrance of Liam into Emmett’s life was an incredible factor in his advancements in mobility and gross motor skills. Emmett wanted to do everything that his younger brother was doing. I still remember the day I went into the kitchen, and came back out to find a certain young man had climbed up onto the couch from his chair. The shock and excitement was fantastic, it was definitely a “Take That Spina Bifida” moment!

At two and a half Emmett still did not talk with the exception of a sound here and there. In August of 2009, Emmett had a seizure, just a week afterwards a shocking thing occurred. Emmett began to speak. It was such a wonderful surprise.

One cool October morning, Emmett would not wake up. We took him to the local hospital, three hours later we were back at the IWK Children’s Hospital, and Emmett was getting a shunt revision. His shunt had blocked up by his neck, the neurosurgeon removed the chunk and brought it out to me, the surgery was successful. Not long after the surgery Emmett began doing a lot of interesting things we were told he would probably never accomplish.

2010 was an incredible year for Emmett in terms of mobility, weight-baring, etc. He received his first AFO: then a standing frame, then he began walking behind his plastic chair from his table, then walking while in the stander.

He then refused to use the standing frame. He wanted to walk. He wanted to run like his brother, he wanted to go, go, go…..

By the time Christmas 2010 rolled around, I knew I had to do something to help, to give him that wish. We began to fundraise. I first purchased the walker. “Goldie” and Emmett became instant friends. I called the Spina Bifida Clinic, because no one had suggested any of this for Emmett. Everyone, including his physiotherapist felt he wouldn’t be able to move his hips properly. Boy, were they wrong!! Preparations went under-way, he was fitted for two KAFO’s and a wheelchair for longer distances. By Summer of 2011 Emmett had his wheelchair. He is growing up so quickly, at four and a half, it’s hard to keep up with “Wheels Francis”.

In the Spring of 2011, Emmett proved he had the power and agility to move, to prove the Doctors wrong. When someone tells you the worst case scenario; don’t believe it. Plan for the worst, but always, always hope for the best. You just may be surprised where your hopes can take you.

I am so glad that I was given the opportunity to experience this journey with Emmett. He has helped me grow in ways I never knew were possible. Isn’t that what love is all about?

"Motherhood is about raising and celebrating the child you have, not the child you thought you'd have. It's about understanding he's exactly the person he's supposed to be. And, if you're lucky, he might be the teacher who turns you into the person you're supposed to be." ~The Water Giver

Thank you Charmaine for sharing your awesome little man with us!!