Halloween Hair

It has been CRAZY busy around here....

(packing the business, setting up my new studio, bum teeth and broke down car to name a few things..)

So I haven't found a second to post this week...

But I HAD to take a second to share this!

Today is the last day of school before Halloween.

And Audrey worked VERY HARD to create her very own Halloween Hair....

Oh this kid kills me with her unique style!!!

Happy Friday before Halloween!!

Awe....

I am in Awe.....

Sitting here in Awe struck wonder....

And so humbled.....

And so grateful.....

And so amazed!

It has been a DAY. It started off with Nat in a BAD mood. He fought and fought with his aide this morning. I FINALLY dropped the kids off at school and dashed into town for Dr appointment #1. Sat through that hour (and yes, did get some questions answered, but really felt like I was "doing time" half of the time), then it was off to figure out a problem at the Housing Authority. Thank goodness they are better in person than they are on the phone! Then I was supposed to go to church to work on the Children's room, but had to cancel. I ran by Salvation Army, only to learn that they don't do what I needed anymore. Bummer. Then it was off to BB to meet "the crew". While there dismantling my sewing area and loading it in the truck I had 4 customers walk in... chaos! Next was a dash to the house to unload the truck in 10 minutes flat. Race to the school to pick up Nathaniel and head off to Doctor's appointment #2. Boy were they running late! And here we learned that, yes, Nathaniel truly does need the next surgery very soon. They will be scheduling it and in contact with me soon. (Nat and I prayed for a clear answer.. .and we got the clear part, just not the answer we wanted!) Without much time to spare, we headed back North to an agency that Salvation Army told me about (wow... they were so kind and helpful!) and then Doctor's appointment #3. Love, Love, Love that Dr.... he just heals my heart! But no sooner than we were done there were we dashing off to get our harvest bag and head back home to work on my sewing area. All of this before we pulled into our driveway at 3:30 this afternoon!

So Faline calls to say that she had someone drop some stuff off for me, and she would be to the house soon. Before I knew what happened, I was knee deep in homework with the kids, and construction with Faline. I totally forgot she said she had something for me.... so a few minutes ago (about 10 pm) she says to me "we have to get your stuff out of my car now". I was confused, but what else is new! So she said she would carry it in and I could put it away.

Bag 1 was nice.

Thoughtful.

A blessing to us.

Bag 2 was a "wow.. this is GREAT" moment.

Bag 3 had me shocked.

And then Faline showed me the boxes of stuff she had already put away in my freezer when I wasn't looking....

All from a perfect stranger.

A person who inquired on a item I had for sale on a Craigslist ad.

Who read my blog from the signature in my email.

And who is a Sister in the Lord.

And here I sit in awe...

complete awe....

How GREAT is OUR God???

And how wonderful it is to be surrounded by His love....

Even His love through a perfect stranger who listens to His leading!

I am humbled and thankful for His perfect provision today,

and yet,

I can't wait for the season when I get to be the blesser....

And through my tears and my awe struck wonder

I say

BLESS YOU and THANK YOU!!!

Refiner's Fire

My mind is spinning recently....

And I think it makes my words make less sense to others than they do to me!

I want to assure you that I understand what is happening in our life right now.

I get that I am walking through the Refiner's Fire.

I get that He is taking me to a new place.

And I get that He is doing it in love for me and my family.

I am actually embracing the journey, and have peace in the outcome.

That being said....

It is still the Refiner's FIRE that we are walking through.

He is going to take us to the other side, of that I am confident.

But not without some discomfort.

Not without ripping open some scars to heal them.

Not without my walking through the fire.

And there will be pain...

probably healing pain, but pain.

And there will be burning...

after all it is called the Refiner's FIRE!

And there will be tears...

because after all I AM Gretchen and that is how I heal!

But through it all I KNOW He is with us,

And He loves us,

And I have confidence that we will emerge on the other side in a better place, and in better accordance with His will.

So bere with me on this journey, for I am sure we will all be amazed at what is on the other side!

And don't doubt me on the days when I just have to let the pain and tears out...

I have not lost sight of the Lord!

A way to help MANY

MANY of you have already seen this, but for those that haven't please read on... if even one more person hears about this here when they wouldn't have seen it otherwise, then it is worth my time to post :)

 October is Spina Bifida Awareness Month and I, along with many other SB moms, want people to be aware of just how special our kids are. We especially want to spread the news and hope that God DID NOT make a mistake when He formed our children. Every child is unique and special, and SB does not make these precious ones not worthy of life, but that is the choice that so many are pushed towards when their children are diagnosed. It's unfortunate that many moms who learn that their unborn baby will have SB, don't see their child as special or the hope that a life with SB can bring, so they choose termination. Do you ever feel like you want to do something to make a difference but you just don't quite know what to do? Well keep reading and you can see how YOU can help make a difference.

Here is your chance to do something. Something bigger than me or you. Something so powerful that it could change someones life. Something so powerful that could let unborn babies live.

This Wednesday, from 12-1pm (EST) has been declared as Spina Bifida Kids Worldwide Day of Prayer. Many of you know just how powerful prayer can be. There is no question in my mind that the hundreds of people holding Nathaniel in prayer is what has brought him so far. As of right now, there are 1347 people committed to praying. That is amazing!!!!! If you don't know what to pray, here are some specific things that you can pray:

1. Obstetricians are usually the doctors who first diagnose Spina Bifida based on a prenatal ultrasound. Unfortunately, most know very little about SB except for what to look for on the ultrasound. Many of us were told by our OBs very scary and inaccurate information, such as “Your baby will likely not survive,” “She will be a vegetable,” “Terminating is the most loving thing you can do for this baby.” If this is the first time you’ve really even heard of SB, and a doctor you trust tells you this, you’re probably going to believe it. Please pray that these doctors will be educated about the SB prognosis so that they can give the diagnosis accurately and compassionately with hope and conviction that these children deserve a right to live!

 

2. We SB moms will always remember the day we received the diagnosis as one of the most terrifying days of our lives. An initial grief response is denial, which often presents as “Please make this problem go away.” Termination is offered quickly. Please pray for these mothers and fathers, that they will first and foremost trust God to get them through this scary and uncertain time instead of letting fear guide their decisions. That God will draw near to them and make His presence known, as He did for so many of us. That these parents will be so filled with His peace about the future and love for their child that they will consider carrying the baby to term the easiest choice.

 

3. These precious babies are absolutely innocent and helpless. They are being thrown away because they are not “perfect.” Not one of us is perfect. Please pray for the lives of these babies to be spared. That each movement and kick will remind the mother that God knit that baby in her womb exactly as he or she should be. That their lives will bring glory to our Father.

4. Many of us SB parents cite the support of our family members and friends as the biggest comfort during the time right after receiving the diagnosis. But there are also families and friends who are unsupported and even encouraging of termination. Please pray for these family members and friends, that God will use them to minister healing to the parents’ breaking hearts. That they will be wholly supportive, not hurtful, and they will lift up and help these parents as their raise their child.

 

5. I also ask that you pray for each of these children and people who have made it successfully to this life and walk every day with a variety of medical needs. I specifically ask for prayer for the medical community that they treat these individuals as just that, INDIVIDUALS, who need specific care, not cookie cutter care.

6. And finally I ask that you lift up each parent of a SB individual. These parents have made the courageous, and sometimes very difficult choice to raise their children, many to the glory of God, and they need to be help up in prayer for continued strength and encouragement.

An hour of your time is all it takes to help make a difference. Wherever you are, whatever you are doing, just pray. And know that you could could help a mother choose life for her unborn baby.

 

*I don't often get a chance to share pictures of Nat's journey through the years... this was a fun opportunity to show where he has come from and remind each of you that there are journey's worth taking. Please pray with us!*

Right vs. Easy Choices

Why are the "right" choices always the "hard" choices or the ones that hurt?

It has been a heart wrenching day here in my world.

And I have spent most of it either:

A: NOT letting my mind think about ANYTHING

B: keeping SO BUSY that I don't have time to think

or C: in tears.

If you read here often, then you know that I am a general partner in a business called Butterfly Boutique.

Did you know that we opened our doors for the LAST time today?

We will never again open for a "regular business day" again.

And that is so HARD for me to swallow.

Oh, I know without a shadow of a doubt that this is what God wants me to do. And I know that it is best for my children and I. And I know that He will bring other fulfilling things into my life. But knowing all of that does nothing to take away the pain.

I love Butterfly... not as much as I love my children, which is why I am making the choice for them not it, but I still love it, and seeing it close is heart breaking to me. All of the hours I have poured into it over the last 5 years. All of the blood, sweat and tears that have gone into it. All of the wonderful people I have met through it. All of the good we have been able to do in our community. All of the dreams I had wrapped up in it..... Gone. All of it gone.

Locking the doors tonight was SO HARD. I honestly didn't mind that we had a few late customers, it prolonged the minute I would have to lock those doors, knowing I wouldn't be opening again for business as usual ever again. And having an audience when I did that? RIDICULOUSLY hard! I just wanted to sit down on the ground and WEEP at the unfairness of it all! But I didn't .... I turned my mind off, locked the doors and drove home. (Where I went and hide in my mommy closet and cried my eyes out!)

I had such high hopes for 2010.I was going to get it together this year, have fun with my children and find a new routine for all of us. Instead I have:

~Fought tooth and nail against a system that wants to explain life (and my son) from a "psychological" stand point when it (and he) are neurological.

~Accept the fact that I a married a man who will choose his addiction over his family.... EVERY time.

~Ended my 13 year marriage and learned to walk the devastatingly hard road of a single mom.... with a special needs child.

~Accepted defeat and moved out of the home that I have poured my heart and soul into for the last 12 years.

~Regained .... and then lost again.... my best friend.

~Learned to live WELL below the poverty level, yet still hold my head up in public.

~Endured 3 major medical procedures with my son, and have one more on the very near horizon.

~And now, closed my business.

2010 is NOT what I thought it would be!

(to say the VERY least!)

And you know what....

I think the hardest is yet to come.

We still have to go take apart the store.

Piece by piece we will have to take it apart and sell it off.

All of those pieces that we so lovingly created with our hard work we now I have take apart.

And THAT is going to come darned close to killing me!

Only He can get me through this next two weeks.....

I know that He never promised us it would be easy, and that life wouldn't hurt.

I know this.

But knowing it does not take the pain away, or make it any easier.

And  I REALLY want to know why He leads us down roads with such HARD choices on them.

Just one time, couldn't the right choice also be the easy one?

.....

and I wonder what path He has for me next????

What I have been working on....

Let it be heard that I am NOT a fan of child pageants

.

I just think that they are wrong on so many levels.

But to be honest, my thinking that will not stop them from happening and someone is going to earn a pay check dressing these children...

So when I was approached last weekend to make some pageant outfits I knew how broke I am and felt that I HAD to take this job, even though the timing on it was AWFUL!

And I did hope that I could influence the mom to be a bit less over the top on the .... riskiness .... of the outfits.

I had some rough descriptions from mom,  a few pictures off of the Internet from her and less than a week to come up with three different styles for this girl...

So here's what I have been madly designing and construction in the midst of my chaotic week:

 For the "Red, White & Blue" category....

Yes, I agree, she left the blue out!

To be fair there is a TINY bit of blue in the ribbon...

 For the "Barbie Girl" Category.

No, I have no idea what that means, but this is the look that they wanted for it :)

This was actually my favorite one on the girl.

 And this is the one for the "Western" Category.

This is the one that was way over the top to me, but the customer loved it, so I guess it's all good...

I did enjoy working with this client. Under all the stress (and who wouldn't be stressed with 6 children??) she was the sweetest woman, and her kids are adorable.

And what were my kids doing while I slaved away on this project?

Most of the time they were asleep (I worked this order in the EARLY morning or LATE night most of the week), but last night they were right there with me....

And they were FABULOUS!!!!

My great staff was a tremendous help and the kids were so good...

They even got an ice cream cone on the way home from delivering the order because they were so good!

I am glad this one is done, and look forward to working with this client another time.

What did you create this week?

Funny times

I am sitting here working and listening to Nathaniel and his Aide talk and CRACKING UP...

Nathaniel: I tried strategy one and it did NOT work.

Reb: Ok

Nathaniel: I tired strategy two and it did not work.

Reb: Ok

Nathaniel: I tired strategy three and it did not work.

Reb: Ok

Nathaniel: I tired strategy four and it did not work.

Reb: Ok

Nathaniel: I tired strategy five and it did not work.

Reb: Ok

Nathaniel: So here is strategy six... you do it.

Reb: So what were strategies one through five?

Nathaniel: Weren't you paying attention? I TOLD you... you have to do it now because you weren't paying attention.

Reb: HOW did I loose this discussion?

Oh My, that boy has some interesting logic!

How Blessed am I?

I can't not express with words how much it means to me each time one of you leaves me a comment! My heart sings with joy at the words of encouragement and understanding you share with me.

I often post knowing there are no answers. Only He has the answers, and He will provide them as I need. But many times I need to just share my heart. And I choose to share in an honest manner. I never try to tear anyone down with my words, but I do try to b honest because there is nothing I hate worse than the people who pretend to have it all together when they don't! So sometimes the cries of my heart come out in my words... that is just how my life rolls!

But then I open comments and see the words "I am praying for you" and NOTHING could touch me more.

Nothing.

That people would take the time out of their day to remember my children and I in their prayers is the HIGHEST honor in my opinion. Often times these people I have only "met" through our words online, and yet their stories touch my heart so deeply and their words are such a blessing in my life.

So from the bottom of my heart, with humble tears of honor,

THANK YOU

For reading our life.

For walking this journey with us.

For your kinds words.

For your encouragement.

And for your prayers.

You all Bless me beyond words.

I often ponder how some people get through life without the Lord.

And recently I have began to ponder how people get through without like minded people in their lives.

I don't know how I ever got through this journey of life without my blog friends.....

But I am SO THANKFUL I have this community and family now!

How He Loves

* there is a treat at the end of this post if you make it that far!! *

I am having a rough morning.

Emotions seem to be overtaking me, flooding me and drawing me ever closer to the foot of the cross.

As I sit here, curled up with my coffee and music I am humbled, brought to my knees by the thoughts that have overtaken my heart.

I am at a major crossroads in life, and though I know it's a great thing, it takes my breath away. I am not kidding when I say I am overtaken with emotions. There are so many that I am having trouble sorting them out. But the thing is, I can't see clearly His path through all of the emotions everywhere, so I am taking this morning to try and ground myself. I want to be grounded in HIS plan, I want to be grounded in HIS peace and I want to make sure that, to the best of my ability, I am taking my family on a journey that is following HIS path for our lives.

Cross Roads number one that seems to be heaviest on my heart, but few know about it since I haven't really be talking about it... Nathaniel's health. This last bout with infection, pressure sores and treatment has terrified me.

We have battled a recurring pressure sore on Nathaniel's right foot for over 5 years now. We have been around and around and around with braces, padding, walking vs. wheelchair, antibiotics and trips to the podiatrist. We had finally got into a somewhat workable routine and were maintaining pretty well, but then the unthinkable happened this summer. I broke Nathaniel's brace. The one that we had worked and worked to perfect. It was an accident, but once it happened there was no going back, we had to start all over and make a new brace. And that has turned into a nightmare of epic portortions!

In the midst of this nightmare the pressure sore came back. Big time. But it was NOT an open wound, there was internal bleeding, but no opening, so the doctors and I went on "monitor" status. Two weeks, no problems. Then it hit.

On Monday it was completely normal.

By Tuesday Nathaniel's entire foot was swollen and HOT (Spina Bifida makes his feet VERY cold all the time, HOT clearly pointed to infection here). We actually thought he might have kicked something and broke his foot or some such thing. But all the XRays and testing came back clear, and the wound still was internal with no signs of an opening, so we scratched our heads, started a round of antibiotics and decided to follow up with his Ortho and pediatrician again on Wednesday.

 Wednesday the wound still looked awful, but when the Ortho tried to draw fluid out of it we got nothing. We were expecting blood or puss (worse case) or even clear fluid (best case), but we got nothing! Ortho ordered a stat MRI and said to stay on the antibiotic.I tried all afternoon to get a MRI scheduled but the best I could get was an appointment for Monday morning. 

By Thursday morning all I did was run my hand over the bottom of Nathaniel's foot and blood and puss were seeping through his skin!!!At this point we hospitalized Nat to get the MRI NOW and figure this mess out. By the next day we had had emergency surgery that removed A LOT of infected tissue (like solid black grossness) from his foot, and were waiting on labs.

Tuesday confirmed the worst. Nathaniel had staph in his foot. Not ONE strand, not even TWO strands but THREE separate strands of staph growing and attaching his little body in that foot!!!!

It absolutely terrified me how fast and furious this whole thing set on. By now, a month latter, we have had surgery, packed a wound, been on antibiotics for the whole time, been confined to the wheel chair, had the braces RE fixed, and now, just last week found out that we are going to have to have ANOTHER surgery to hopefully prevent this from occurring again. It took every ounce of strength I had to not burst out in tears in the doctor's office in front of my children at that news.

Just that little bit of news knocked me right on my ass. This will make the fourth surgery this year. This year, the one that I have become a full time single mom with little support and even less wiggle room. It has been a HARD year for so many reasons, and I feel like the storms just keep coming. Really, how much more can one family handle? The ONLY saving grace is that I know I don't have to handle it, because thankfully God handles it with me. I just have to rest in His arms while the waves beat against us. And that knowledge is the ONLY thing that has kept me the least bit sain through this journey!

Cross roads number two is a bit more public, but there is a deeply personal side to it too.

We (my business partner and I) have made the difficult choice to close Butterfly Boutique. I LOVE my business, but I love my family more. In January, we decided to put the business on the market and sell it because we both needed to focus on our families more. I was totally ok

We had the shop listed for months with little to no interest in it. Then summer hit and the needs of my children hit even harder, and we had to face the fact that we would be closing, not selling. This was much harder on me. Letting go of all of my hopes and dreams in the business world so soon after letting go of my hopes and dreams in regards to my marriage and so soon after letting go of the house I loved was a brutally hard blow. Handing the torch off was fine with me, but closing and basically burying all that hard work is killing me. When I actually think about what I have to do to take apart what I worked so hard to build I can't stop the tears. I KNOW it is  the right thing to do, but darned it it HURTS. I feel like a piece of me is dying, and that is not me being dramatic, be real and honest.

So as the final week draws closer and closer to a close I find myself more and more emotional. It is ridiculous on one level, but totally human on another level. I KNOW that God has a new plan for me, but I am afraid and heartbroken to let go of the old one. Such a human weakness. But, hey, I am human! So if you see me crying for no apparent reason, just know I am grieving....grieving the loss of my business.

And cross roads number three.... I just can't look at it too deeply right now because it WOULD push me over the edge, but know that I am facing HARD choices and letting go of dreams I have for my son too. I have spent a great deal of time on my knees in prayer over the situation with Nathaniel and I have had to face so very heartbreaking facts about his condition. It is time for me to get my head out of the clouds and seek life long treatments and supports for him. And that is NOT easy. But, with God carrying me along, we are going to walk down this path. PLEASE pray for me on this journey... it is so hard for me!

And finally cross roads number four (not that this is the last one, but it is the last one I am going to share today!) is not really a cross roads, just a new step in the grieving process. About a year ago I faced the HARD realization that my husband did not want to be a husband in the biblical sense, and I had to decide whether I could be married without the bible as the base of my marriage. I had to choose no, and while it sounds easy enough, it really is NOT easy to make that choice. Enduring the HATE from his family over the fact that I will not stand around and let his addiction rule his life AND ours. Walking the road of a single mom, and in my case a single mom with a special child. And facing the fact that I will not walk along side of a lifelong partner has striped me of everything. The only thing I have left is the cross... I know that without God NONE of this is possible. But in the past few weeks I have hit another bump in the grieving process and journey of this path.

Mark has chosen not to find another supervisor to supervise his visits with the kids, so I have had to sit them down and tell them that they can not see their father.... again. It breaks my heart that he is so selfish that he is not willing to sacrifice his pride to spare his children this pain. It breaks my heart to see these precious souls struggling with the fact that their dad does not love them enough to walk through a refining fire to see them. And I struggle to find words to comfort them, yet not lay my feelings and my frustrations on them. They have too much to carry of their own, it is not my place to let them carry my burdens too. It makes me sad that I made the choices that gave them this man as a father.... what a heavy burden that is!

So this morning I sit here, with tears streaming down my face and lay it all at the foot of the cross, because there is no other way I can get through this day... and over and over in my heart plays these words, and this song....

How He Loves

He is jealous for me,

Loves like a hurricane, I am a tree,

Bending beneath the weight of his wind and mercy.

When all of a sudden,

I am unaware of these afflictions eclipsed by glory,

And I realise just how beautiful You are,

And how great Your affections are for me.

And oh, how He loves us so,

Oh how He loves us,

How He loves us all

Yeah, He loves us,

Oh! how He loves us,

Oh! how He loves us,

Oh! how He loves.

We are His portion and He is our prize,

Drawn to redemption by the grace in His eyes,

If His grace is an ocean, we're all sinking.

And Heaven meets earth like an unforeseen kiss,

And my heart turns violently inside of my chest,

I don't have time to maintain these regrets,

When I think about, the way

He love us

Thank goodness the Lord loves us SO unconditionally, SO FAR beyond what we deserve and SO fiercely, because I know I for one could not make it through these storms without that knowledge!

And you prize for getting through this post....

You get to enjoy your self a beautiful song from the David Crowder Band!

Apple Time!

This weekend I found out about an opportunity to go to the apple orchards and "glean" apples for a really great price, so I had to take the kids. First I love picking apples from the orchards... so fun. Second all those fall colors make for great pictures! And third, inexpensive apples for canning.. couldn't pass it up! So yesterday we headed down..

 Apple orchards and wheel chair was a bit.... interesting!

 But the colors were grand!

 And the kids were a kick, attitudes and all!

Of course the orchard where we went was BEAUTIFUL too, so once we were done gathering apples I tortured the kids with picture time. I haven't done this to them in SO LONG!

So much fun and such a great outing. I loved it, and it was affordable too!

What a fun family day :)

What fun activity have you done recently?

A Transformed Room!

In our old house all of the storage was built ins in Audrey' room, so we couldn't bring them with us. This lead to some problems in the new house....

 But not long ago we found a solution...

 EQUALS

Oh, her room is so much better now and I am so much happier!!! AND it fit my budget, since it cost me $3.00 plus tax :)

A funny story on the paint. I was REALLY BROKE (seems to be my motto lately...) so I told Audrey that she HAD TO choose a "miss tint" at the hardware store. The miss tints are paint orders that didn't come out the color the customer wanted so they didn't buy it, therefore the store marks them way down to make something off of them. On this particular night Audrey was ADAMANT that we would paint the new storage thing pink, but there was no pink at the store. We were having a pretty heated debate about the colors they did have when one of the guys that knows me there came up and whispered in my ear "I can magically turn the yellow into pink for you at no extra cost..."

Ding Ding Ding.. I think we have a winner!!!

He did a little mixing magic and we were all happy. When I finished and put the storage thing next to her doll house I had to laugh... I don't think we could have matched it better if we tried, and we didn't try at all!!

What have you transformed recently?

What is October? P3

What is October??

Check HERE if you don't know!

The victories in Living with Spina Bifida are far reaching!

A victory for us this summer??

We got to do swim lessons...

For the first time in THREE YEARS!!!

Because we actually had a break in surgeries and procedures, so it was safe for Nathaniel to get in the pool this summer!!!!

A simple thing that many families take for granted,

but not us!

We sing praise to the Lord for a summer of swim lessons!

Now I have to confess.

I was BROKE this summer.

I was actually working for negative money once you figured in childcare!

But through the grace of God and the generous donation of a kind agency, we still got swim lessons!

So there you have it.

Everyday life with Spina Bifida in the simple things....

Like swim lessons and community supports!

Monterey Bay Aquarium

Due to the kindness of some special friends Faline and I were able to take the kids on a vacation before school started back up to the Monterey Bay Aquarium. It was a fun trip and the Aquarium was very interesting. I was very disappointed in the wheelchair accessibility, but other than that it was a great trip.

I think that the penguins were the favorite. Both Brianna and Nathaniel were trying to talk us into bring all 23 of them home with us! I am NOT sure where they thought that those penguins would fit in the car or who would be caring for them at home, but boy did they try! Audrey especially loved the touching pools where she could feel all of the sea creatures. Nathaniel even touched a few, and I have to say that that was thanks to Matt at PSC, Nat NEVER touched living creatures before Matt this summer!

All in all it was a fun trip and we are so thankful to our generous friends for making it possible!

An Amazing Medicine!

I have long forgotten what laughter can do for one's heart...

It seems like forever since I have felt like laughing, 

But just this week I have been filled with laughter, and it has been so healing to my heart!

Just the other night I went to a group that I have recently started attending. The group has been a real heart blessing to me, but the blessing REALLY hit me this week. I am T.I.R.E.D. Work is crazy, kids are crazy, keeping up with the house is crazy, and Nathaniel's health continues to throw me right over the edge. (Just that day, before the group, I learned that Nathaniel needs yet another surgery. This will be the 3rd and 4th surgeries of THIS YEAR. Oh man.) So I was tired as the time approached for this group. I was so tempted to go to the beach and take a nap instead of attending group, but I chose not to. I am so glad that I chose to go to the group. I sat on the floor and was blessed by a great discussion, but even more I was BLESSED to find myself laughing. Really, from the heart, joyful laughter. And as I sped home (we don't do the greatest job of getting out on time..) I reflected on the fact that it has been a LONG time since I could just relax and laugh in a situation. What a treat.

So with that lesson fresh in my heart, I looked at my daughter this morning and just laughed. Now this is REALLY HUGE, because the control oriented, organized mommy in me wanted to "fix her", but then I remembered laughing... So I scooped her up and giggled with her and let her explain her "glorious creation" to me. After a few minutes I did gently ask her if she wanted mommy's help with her creation, but I got an EMPHATIC "NO!!" on it.... so I let her go off to school with her glorious creation.....

 After all, it's jsut hair, and if she changes her mind she can take the clips out!

"A cheerful heart is good medicine, but a crushed spirit dries up the bones."

Proverbs 17:22

Friends..... and funnies!

A while ago (time is all relevant anyways, right?) we headed north to have a mini family vacation before school started back up. We had tons of fun visiting with our friends J & T, and their beautiful children. My kids especially had fun playing with J's work toys. As much fun as it was, I am not sure if they will ever invite the chaos of our family on them selves again, but we do have lots of fun pictures to remember this trip by.

It was nice to just hang out with friends and let the kids (of all sizes) play. Sometimes I put way too much pressure on hang out situations by expecting my kids to behave with great manners and in such a way... but let's be honest, kids will be kids and putting that extra stress on the situation doesn't help anyone. So, even if I was MORTIFIED when Nathaniel was NOT nice to J&T's son, I will focus on the FUN that we had, and how great it was to be in the company such great people!

On the final note though.... you HAVE to check out Brianna and her hilarious moves here....

What is Ocober p2..

It's the little things that are different when you are living a life with Spina Bifida.

Like the first day of school!

 Bags packed and ready to go....

for TWO children!

FOUR for Nathaniel and one for Audrey!

Shall I explain?

The red back pack is a 48 hour emergency supply bag. Now this might be special for us since we live a few short miles from a nuclear power plant, but our students have to have 48 hours worth of emergency supplies with them if they have anything "special". Well Spina Bifida is special so in that backpack are pull ups, catheters, lubricant, gloves, medications and a change of clothes. Also in there are detailed instructions as to Nathaniel's care, so that if for some horrible reason his regular aids at school are not available Nathaniel can still receive the care he needs.

The two black bags are all of the catheter supplies that are needed at school. 2 boxes of catheters, two bags of pull ups, 2 containers of wipes, 2 tubes of lube two boxes of gloves and a change of clothes. If you know anything about how medical supplies are sent, then you probably realize that I have to hoard supplies all year to be able to send THIS MUCH to school at once, but long ago I realized that the staff is NOT good at telling me when they are LOW on supplies. The system that we have used for years and seems to work well is that I send TWO of everything in the beginning and when they open the "back up" (or second one) they notify me so that I can replace it. This works well because we never run OUT of anything!

The Blue back pack is Nathaniel's daily back pack.

And the tan back pack is Audrey's daily pack.

Geesh... all for two kids to get to school on the first day of school!

Can you see why I feel like I organize for a week for the kids to go back to school?

But otherwise the first day of school at our house is just the same as yours....

 Excitement about choosing the "perfect" first day out fit.

 Excitement about seeing familiar friends and starting new things.

And one child thrilled to pose for pictures while the other hides from the camera.

Oh.... what is that you say?

Only MY kids pull that? Bummer.

I thought it was universal!

How are simple things different in your life?

Trading My Sorrows

I love the simple joy of singing worship songs with my children.

I love their excitement when on of their favorites comes on in the car.

I LOVE it when my son yells from the back seat "turn it up Mom!" and it is one of my favorite worship songs.

That happened in the car today and I have to tell you it made this mommy's heart melt!

So I thought I would share the song with you.

I'm trading my sorrows

I'm trading my shame

I'm laying them down for the joy of the Lord

I'm trading my sickness

I'm trading my pain

I'm laying them down for the joy of the Lord

We say yes Lord, yes Lord, yes, yes Lord

yes Lord, yes Lord, yes, yes Lord

yes Lord, yes Lord, yes, yes Lord, Amen

I am pressed but not crushed

Persecuted, but not abandoned

Struck down, but not destroyed

I am blessed beyond the curse,

for His promise will endure

and His joy will be my strength

Though the sorrow may last for the night

His joy comes with the morning.

I'm trading my sorrows

I'm trading my shame

I'm laying them down for the joy of the Lord

I'm trading my sickness

I'm trading my pain

I'm laying them down for the joy of the Lord

We say yes Lord, yes Lord, yes, yes Lord

yes Lord, yes Lord, yes, yes Lord

yes Lord, yes Lord, yes, yes Lord, amen (2x)

Isn't the imagery in this song beautiful. That we can take all of the sorrows, and the pain, and the sickness, and really just the GUNK of life, and lay them down at the foot of the cross. And then, (this is the best part!), in their place we can take up the joy of the Lord!! That is so awesome to me.

And this part REALLY speaks to my heart:

I am pressed but not crushed

(because YES, I am pressed at times in my life...
 many times it feels like!)

Persecuted, but not abandoned

(NEVER abandoned with the Lord!)

Struck down, but not destroyed

(The enemy does NOT have the power to destroy when the Lord is in control of you life!)

I am blessed beyond the curse,

(I feel the curse in my life.... do you have one in yours?
But the blessings go beyond it!)

for His promise will endure

and His joy will be my strength
(thank goodness I don't have to do it in my own strength!)

Though the sorrow may last for the night

(yea... that night feels REALLY LONG in my life....)

His joy comes with the morning.

(But man am I looking forward to THAT morning!!)

And now that you have endured my commentary on the song....

Here!

Simply listen and enjoy!

 

What are some of your family favorites?

Which songs speak to your heart?

Thank goodness for God's grace!

Are there times that you wish it was easier to be Godly?

I have those moments.... and I had one today.

It stinks.

It is HARD.

And sometime I just don't want to do it....

But then I remember that Jesus never promised us that life on this earth would be easy. And he never promised us that we would like it. Nor did he promise us that we wouldn't ache with pain so deep and heart wrenching that we think we can't breathe!

And then I remember his promises. He DOES promise to be right there with us. He DOES promise to love us through our pain. And he does promise us that he has a perfect plan for it ALL.

So when those moments happen (like happened for me today) I fall on my knees knowing that he is there with me... and you can too!

But it still HURTS.

And it still makes me cry.... and I still HATE it.

I just know how to get through it without becoming a bitter woman over it!

So what happened today? Well I am so glad you asked!

I met a client downtown today to get some treasures together for an order for her children. Now I am not big on downtown.... just too many people for me! But that was where the store was we needed to be at. So after a LONG spell at the store gathering lots of treasures, the kids (who were AWESOME during this trip!!) and I headed back to our car (which was parked forever away from us of course!) On this little jaunt we ran into members of Mark's family.... TWO DIFFERENT sets of them no less!

Now SOMEHOW I am the big bad b*&%$ to these people.

And that is so not fair.

And it HURTS me to be judged that way.

First... it's not fair! I know that I am not blameless but in truth I am not at fault either. I hung in a HURTFUL marriage for 13 years. I endured YEARS of Mark's addiction and prayed constantly for him. I loved him through all his falls and tried so hard to show him that there was a way out of the addiction if he wanted it. But in the end, having Mark in our lives daily was HURTING the kids and I emotionally and physically. I had to leave. And I KNOW that God lead us down the road that we are on. I have no lack of peace that God is control of this journey. I also know that I am healthier than I have been in YEARS right now, even though I am deep in the valley. But I want to know why I am the bad guy here? I am not the one with the addiction. I am not the one that has lost job after job due to that addiciton. I am not the one that physically harmed people. I am not the one who lives a life without morals. And I am not the one who CHOSE something over my family. Why do these people hold me responsible for this?

And secondly.... it HURTS. It hurts when people hug on my children but refuse to say hello to me. It hurts when they speak to my children right in front of me, but will not acknowledge a word out of my mouth. It hurts when they refuse to even LOOK at me. And it hurts when my children ask me questions about the encounter.

I am a person. I have feelings. These are MY children you are speaking to. Can you not have the least bit of common courtesy to their mother? The one who provides for them. The one who raises them. The one who allows you to see and speak to them. The one who sacrifices herself daily for their well being. I am also the one who prays DAILY for Mark to be victorious over the demons that hold his life. I am the one that teaches those children that their father is in a battle for his eternal life and the best thing we can do is pray for him. Why is it so hard to be POLITE to me??

So tonight I hit my knees in prayer.

In prayer of thanks giving that He is ALWAYS with me.

In prayer of adoration that He loves me no matter what.

In prayer of praise and thanks giving that that very love is one I feel all around me. 

 In prayer for these people who hurt me.

In prayer for the situations that terrs families apart.

In prayer for Mark and his battles.

In prayer for my children in this hard situation.

In prayer for me, that I have the strength to act in manner worthy of Him next time I encounter these people. (Because there will be a next time.)

In prayer that I lay ALWAYS in His arms, NO MATTER WHAT.

Thank God I have God.

Because it does hurt, but I KNOW that there is an eternity at the end of this that will make it all worth it.

And because, seriously, how do those without Him get through these moments?

A prayer walk and a few thoughts... (and that much promised update too!)

I FINALLY got time to go for a prayer walk this morning and just chill with the Lord. I usually do this a couple times a week, but life has been so chaotic recently that I have not been able to carve kid free time out to do this... and man was I IN NEED! So glad I could make the time this morning. This post is mostly going to be fun pictures I took this morning mixed with random thoughts that are demanding release from my brain.

 One of the things heavy on my heart right now is Nathaniel's health. We have been on a roller coaster with the craziness with his foot for the last couple of weeks. (If you missed those posts you can catch up HERE and HERE)

When the sensitivities finally came back Nathaniel had THREE separate strands of Staph in a a foot with no open wound on it... Not good! The treatment options were difficult and thoughts on them were varied. But we came up with a plan that his primary doctor and I were good with, and Praise the Lord, it seems to be working. So he is wheelchair bound again, with his zero bearance brace on again, on heavy duty antibiotics, and we are treating the wound area daily. The chair is not much fun for any of us, but it makes me so thankful that it is not a constant, everyday thing in our lives yet. The brace is no big deal, he always has some sort of brace on his feet, so it's just a different one. The antibiotics concern me, but I know it's the only way to treat this infection, so I am dealing with it. The wound treatment is the part that is killing me. His doctor put in for a home health wound care specialist to come by a couple times a week to check it and help with the wound care, but of course his state ran insurance refused. So I am still doing all of the packing and dressing changes... and loosing tons of weight in the process! And I am not really sure that it is looking perfect, but it is improving... so I guess that is all I really need to know... Ugh! We go back and have it checked on Wednesday, so I am hoping for some answers on how it looks then.

 In the past 6 weeks or so I have taken a really hard look at life, our family and what exactly we need to be supported and survive in a positive manner. I have faced some pretty hard realities as a mom and as a person, but I think my heart is coming around to the needs and what my head has been hiding from for a while now.

 One big and hard decision was to seek psychiatric support and put Nathaniel on some more medication. I knew that the plan would be to medicate him into a state where the negative and harmful behaviors were gone, but I was very concerned that he would be so medicated that he would loose his personality and be sort of like a zombie. But in truth, I am so happy with the results I am totally kicking myself for not doing this sooner!

Years ago in the medication search for him we found the key that unlocked his brain. It was night and day different and so obvious that this was the right answer for him. When he is on his "thinking meds" as we call them, it is like a TV that is full of static or snow and someone adjusts the antenna... all of the sudden he is more clear, he is even old enough to notice the difference now. I prayed and prayed that it would be the same with the new medications, and God is ever faithful. Nathaniel always had this angry edge to him, any conflict or expectation he didn't like sent him into a fit of rage. Very physical, violent rage. But with this new medication it is like the edge has been removed. He still gets angry and frustrated, but he doesn't go straight to violence, he is much more teachable and redirect able in the moment now. Again, it is night and day difference in our household! We have not had a physical outburst or rage in 21 days!!! Before we were completely lucky to go 2 days between rages. All of the bruises I so regularly had all over my body from him have healed..... Things are so different in our house right now, and it is a peace that I can breathe in!

I know that the medications have side effects and risks, but to me keeping him at home and out of a group home is completely worth the small risks associated with the medications. I am not advocating this for everyone, it was something I completely had to pray over and come to terms with, but for our family it has made an INCREDIBLE difference and we are so happy!.

 A few weeks ago I went to a seminar on neurological brain damage and helping people with it live to their fullest potential. It was completely eye opening and enlightening to me, but it also made me face some hard choices and readjust my brain. I think it will have to be it's own post. But it did make me take a hard look at the supports that we have for Nathaniel and assess whether they were the RIGHT supports for him. And I think not. I think it is time to move away from ABA Behavior support and move towards a daily living aid type of support. It is going to be hard in many ways (finding the funding, fighting for the need and filling the staff positions) but I think it is what both Nathaniel and I need. I also think that is will help with Audrey too... that poor girl does not get much of her mommy because I have to deal with Nat's needs all the time. I think this road will help balance our family life o much more. Won't you pray for us on this journey?

 I really am at peace with my being done with Butterfly Boutique. I fully recognize and see that it is time for me to be at home with my children full time. But what I am not so much at peace with is the loss of Butterfly for our community. I have prayed so long and hard over this one, and I still feel like there is this 11th hour buyer hanging out out there. It is a crazy feeling (and I am wondering if it is just me not wanting to do the hard work of tearing the store all apart!) but I just can't shake it. We are coming up on the last two weeks of business and there is SO MUCH to do, yet I find myself organizing for the "new owner". Crazy......

 A scripture on my heart constantly these days

Matthew 6:25-27 ²⁵"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? ²⁶Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? ²⁷Who of you by worrying can add a single hour to his life? "

God is faithful. He CARES. He provides. He is. That is all I need to get through each day. I am resting in these truths.

 The subject of friends seems to be "in my face" these last few days. At home group, at therapy, in my heart and in my desires. It is trippy and I am sure there is a message from God there somewhere, I just haven't figured out WHICH message it is yet. I know the message that I hear is that I miss my two nearest and dearest friends. The ones that look at me and know when I need a long hug vs. when they need to speak truths to me in love. The ones that can speak those truths, but are still right there with you to walk it out. And I really am missing the one that I can sit out under the stars with and talk for hours about the hard things in life. But, alas those friends are so far away right now, and they both have their own lives, so here I sit, virtually alone with only acquaintances (and I have so done that to myself!). Is it time to get real with someone new? And do I trust enough to try after the multitude of someones who have heard my heart and then ripped it to pieces? But on the other hand, can I really keep going alone? Ugh. I see why the Lord keeps putting this subject in my face, I am just not sure I have the energy to walk forward on this path with so much else going on, another betrayal will knock me off the path right now.

 Ever feel like the ship lost at sea just riding it all out? That is me these days, but thankfully I know my Captain has the plans and knowledge in His hands... I am just along to gain my sea legs.

Praying that I get those sea legs soon so that this lesson can end!