Oh hear my cry....

Tonight is one of those nights...

The ones when I have to immerse myself in the Lord or I will go CRAZY with worry, anxiety and mind games.

The LORD is a refuge for the oppressed,

a stronghold in times of trouble.

 Those who know your name trust in you,

for you, LORD, have never forsaken those who seek you.

Psalm 9:9-10

 

Nathaniel has been undergoing some very intensive neurological testing the last few weeks.

 

This has been a difficult place for me to get to. It started long ago, but it came to head for me almost a year ago after having some very heart searching conversations with a close personal friend. After talking to him I REALLY started seeking out answers. And the more answers we get, the more questions there are. So it has come down to some major in depth testing, of which I get the first (and to me most intense) results tomorrow. (And man am I wishing that I could take that friend of mine with me to this appointment, but it is not in the cards!)

 

The LORD is my strength and my shield;

my heart trusts in him, and he helps me.

My heart leaps for joy,

and with my song I praise him.

The LORD is the strength of his people,

a fortress of salvation for his anointed one.

Psalm 28:7-8

I KNOW that God has a plan.

And when I am completely focused on Him, then I am fine.

But then I have to blink, or breathe, or someone calls my name, and I loose my focus and then I become TERRIFIED!

I mean, isn't our plate full enough? The Lord really couldn't give me anything else could He? And then I think of all of those that carry burdens so much more than I do, and I know that is cold get worse. But I am just not sure that I am strong enough for one more thing!

And yes, I DO know Philippians 4:13 (I can do all things through Christ who strengthens me.) VERY well, but still......

So, I have been on the edge of this steep cliff all day today.

I have this appointment at 8 am tomorrow morning, and I don't know what it holds for me.

I am terrified of going.

I am weary of going alone, for I am tired of feeling so alone in this world.

And I just have this gut feeling that whatever is said there tomorrow is going to rock my world....

So for now I am blasting my worship music, curled up with my bible next to me, and ready to try and sleep...

but I know tomorrow is coming, and there is no stopping whatever will happen.

 So I am going to put on my big girl pants,

tuck away the tears,

clothe myself in the armor of God,

and walk forward in this journey.

But if you think of me, or my sweet boy tomorrow, won't you please say a prayer for this situation?

Special Chair Blessings...

 This is the front of our new house.

Notice anything about it?

Oh.. yea, I am NOT asking you to notice the cracked sidewalk or the boxes of things waiting for me to put them away... I was thinking more along the lines of the STEPS leading into the house.

Steps are not so much fun with a wheelchair. And definitely NOT fun with a little guy who is going on 70 pounds in a wheelchair!

 Well, some very kind, very generous men from a local church heard about our need for a wheelchair ramp and they came out on Saturday to bless us.

 They even allowed the Diva to supervise the project, and answered her three million questions with patients and kindness.

 Then she must have got to be too much because they put her to work! :)

These 4 men who I have never met before in my life gave up their Saturday morning, worked in the cold rain and blessed our family with a fabulous new ramp into the house.

 Nathaniel was in a LOT of pain (he just had surgery a few days before) so he hung in the house most of the morning, but he did come out for this first trip down the ramp.

And  to thank these wonderful men.

Our people must learn to devote themselves to doing what is good, in order to provide for urgent needs and not live unproductive lives.

Titus 3:14

I believe that these men showed the love of God and provided for an important need in our life, and for that I am so grateful and blessed. God continues to amaze me with His wonderful provision and love.

Missing Taylor ....

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort,  who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God.

2 Corinthians 1:3-4

Babies on the brain...

We have had babies on the brain over here recently!!

Nathaniel *LOVES* babies...

Totally, utterly *LOVES* all babies!

He always asks to hold whatever baby he sees.

He loves on Bella at church.

He begs me to invite Claire and her mommy over so he can hold Claire.

(this is Nat holding Claire in September. He is such a great baby helper!)

 (and beings as Nat had fun shoelaces to play with Claire didn't seem to mind being held!)

(and here is Nat loving on darling Carly in August)

We were fortunate enough to get to love on Claire recently, but that does not seem to be enough for Nathaniel. He keeps asking me for a baby sister for Christmas. And that seems to be his answer to everyone who asks what he wants for Christmas, a baby sister. I find it hilarious that he is only asking for a sister, not a brother, only a sister. But I am also having a very hard time explaining to him that a baby sister is not possible for Christmas. Let me count the ways that it is not possible... umm... it's a little too late to start on that gift, and even if the timing weren't the problem it's not like there is a man anywhere remotely close to my life! And the kicker is, I LOVE babies too. There is nothing I would like more than a Godly husband and a growing family, but I know that is not the path God has called me to. So it breaks my heart into a million pieces every time he insists that the ONLY thing he wants for Christmas is a baby sister.

So that is how Nathaniel has had babies on the brain, but I have had babies on the brain too! I made a prayer quilt for a darling child of God born with a few struggles not long ago, and I am knee deep in a special birth quilt for one of my best friends who is expecting his first child any day now. I have poured my heart into these precious quilts, and as happy as I am to do it, part of me is still (yes, still 7 years latter..) mourning the fact that I won't get to do this for another of my own. Crazy emotional times here!

So we have babies on the brain and the heart over here.... so if you have one that you want to share you know where to come!

Family Work Weekend at the Ranch

We recently had a family work day  at my brother's ranch. I had so much fun, and it was nice to work along side of family. I will confess though, I think I left before the tempers started flaring! Reports that have trickled in from the day after we left were not so good...

(My little brother, Grady, teaching Josie the finer rules of power saws)

 The goal of the weekend was to do repairs to the main house (including fixing all of the leaking windows), build a covering for the patio area and paint the main house.

(Brianna being a typical teenager and playing with either her phone or iPod instead of working!)

Friday's work crew included:

Grady (his ranch)

My grandparents

Bri, Josie, Nat & Audrey

and myself.

 (Bri & Jo are regular assistants to Grady on the ranch)

(putting up window pieces to avoid moisture around the windows )

I was in charge of taking pictures for Bri & Jo to prove that they worked for their FFA hours at school.

 (me playing with one of my favorite toys!)

 But I also brought my airless sprayer thinking it would be more fun and easier to paint the house with. I got two complete sides done, and went over the side that was rolled by my grandfather earlier in the first day before running out of paint.

 It was really nice to be out at the ranch. It is seriously in the middle of no where, with very few people around so the peace and quiet was so refreshing to me. Don't get me wrong. I do not think that I could live there,(no store, no gas station, no nothing other than the Cal Fire Station, bugs everywhere, freezing cold and blistering hot, dust and dirt... yea, not so much me) but it was nice for a visit!

 And the views were beautiful!

 (Nathaniel and his great grandfather, a.k.a. GGpapa, chilling at night)

After a hard day (or afternoon in my case) of work we relaxed and enjoyed family that night. Grady made a super yummy dinner for everyone and we hung out around the fire Josie built. Nice!

 (my grandmother, a.k.a GGmama, hanging out with us)

 The next day we were back at work bright and early, and my parents brought paint and joined the party around noon.

 (please notice the safety glasses ON TOP of Josie's head while she is drilling... not sure she should use this one for school!)

GGmama helping her Great Granddaughters with power tools.... do we see why I have a love for all things power toolish??? :)

 Audrey was very disappointed that Uncle would not let her paint more, but he said he like the paint ON the fence or ON the house, not so much on the ground :) So she spent a great deal of time supervising, exploring or playing with the ranch dogs.

 Josie just loves ladders.... can't you tell from the scowl on her face?

 And Audrey finally found some play mates....

 Ladybugs everywhere!

Then we were blessed with another beautiful sunset and yummy dinner (this time brought out by Papa) before the kids and I headed back into civilization and our warm beds for the night.

All in all it was a good weekend.

We got the whole house painted, and the repairs that needed done done. The porch wasn't quiet done, but well on it's way.

It was good to see family and hang out.

 I got some very special time with my grandfather, who is very ill and struggling with choices right now. We are the only two believers in our family, and it was a special treat to get some quiet time alone with him to talk about what's happening in his life, about how God plays into it and to reflect on the blessed life he has been privileged with. It was also hard for me because I am not ready to let go of him yet, but I also know that God will get me through that too. 13 years of battling for your life is a long time... and that is just from me, one of his primary care takers, not from him who has been doing the battling! Praying peace and comfort over him in all things!

And to be honest, I am so hesitant to take Nathaniel into unusual surroundings because he usually freaks out, but this trip wasn't too bad. Now I am not saying it was perfect (we did have a few major melt downs), but we took his electronics and everyone just got that he would plug in while we worked, and it worked pretty well. So I am happy that we found a way to do what I needed to without rocking his world so bad that I was paying for it for weeks to come. That is a first in a long time for us.

What have you done recently that stretched your comfort zone? Or blessed someone else?

Happy Birthday Gramie Sharon!!

I am cleaning pictures... again.... and noticed that I never posted Gramie Sharon's birthday celebration.

 It was a simple night of family and laughter, but much blessing too.

 One silly thing the kids always do is try to write the sweetest, sappiest things in Gramie's cards. She cries so easily, so their goal is always to make her cry... silly kids! They succeeded again :)

 My mom always loves my sun hat, so we gave her one of her own... Now maybe she will leave mine alone!

 I tried my hand at a gluten free birthday cake... oh my was it YUMMY!!!!

And isn't this one just precious???

Happy Birthday (again) mom!

I love you!!!!

It's THAT time.... surgery time!

My mind has not fully wrapped itself around this procedure. I have not been fully confident that we were going to do this. My prayer and answer for the past few weeks has been "I think this is what we are doing... if it is not what God wants he will tell me."

Really... I am in a zone on this one. And it's crazy too, because this is a relatively simple one! Today our two fabulous orthopedic surgeons are putting screws in the growth plates on the longer bone in Nathaniel's lower legs. This bone is growing faster than the other one, causing his feet to twist in an odd way. So the theory is that we are going to hold them still and allow the other bone to catch up. Good theory I guess... walking is great! But seriously, I am in a fog on this one.

We are at a new surgery center. Before, all of our Ortho stuff has been done at Ventura General, but today the doctors needed to operate at Cottage Outpatient in Santa Barbara. The latest surgery time they could give us was 830 am, which means we left home at 430 this morning! Crazy tired.

Before when we have done general, Nathaniel has been allowed clear fluids up till about 3 hours before surgery. Not this time. They were adamant that he have NOTHING after midnight. Of course he woke up at 130 this morning DEMANDING water. Every 15 minutes he would ask me for water.... every 15 minutes like clockwork from 130 am till they took him back.

So we got here right at 630. Good timing. They took us back to the Pre Op room at 745ish... good timing for an 830 surgery. They got us all ready, then told us 10 more minutes... not bad. Only running like 15 minutes behind. Not bad at all. Then there we sat. FOREVER. With Nathaniel STILL begging for water constantly.

 At 915 I asked how much longer... no answer.

At 930 I asked if there was a problem..... no answer. 

At 945 I was about to pee my pants and I DEMANDING to know what the heck was going on. So little lady, who clearly did NOT speak English went off to find someone to help me....

At 955 FINALLY someone came in and said "Didn't anyone tell you what was going on?"

Ummm...... NO! It seems that no one bothered to make sure that the OR had the tools needed to do Nathaniel's procedure today! So they had to get them from another facility. Then they had to process the tools their way. And then FINALLY at 1015 they took him back to the OR... FINALLY. I have heard such great things about this facility, but they did not live up to their reputation for us today!

And now in the time that I have written this the doctor has come out to tell me that they have done both legs, and Nat is in recovery now. That is good... waking up is how I like him best during these things! He might get mean, he might get violent... but all of that is signs that he is waking up and made it through yet another procedure....

Thank you LORD!

Updated Again: I guess in my hurry to get back to the recovery room, I THOUGHT that I pushed publish.. but I guess not. We made it home and had a restful night. It was wonderful to have my children back together again, see how concerned Audrey was for her brother, and just relax together.

I also did the first dressing change, and while one leg looked BEAUTIFUL, the other looked pretty bad. Please pray with me that it was just these mommy eyes, and that is everything is just as it should be!

Eyy There Mate!

It's time to meet the Soares Family Pirates!

Okay, okay... so I am a TAD BIT late posting Halloween pictures....

But they are CUTE!

And let's face it, EVERYONE else posted a few weeks ago, so you were probably on Halloween burn out, but now? It's cute again :)

Well... I can tell myself that right?

Anyhoo....

 I am actually very pleased with these costumes this year. I only spent $5.00 TOTAL for the three costumes! Everything else we had on hand and I could throw it together to come up with these cute looks!

We had fun dressing up as a Pirate Family and spending some fun time together on Halloween.

First we headed over to the Pumpkin Patch to hang out and get some cool pumpkins...

Look! They are actually BOTH smiling in the same picture!! HOW did that happen? I know, a fluke hu?

Then we headed over to a local church that throws an AMAZING Harvest Festival for the community on Halloween. We had a blast, as usual.

There was trunk or treating...

with GREAT decorations!

And fun games, and yummy cotton candy and even pony rides...

I would love to post the rest of the pictures...

But I guess I post too many pictures because Blogger just told me I ran out of free storage space!

That bites.... but I guess some are better than none :)

And I will have to figure out how to create more free space in the morning, because I don't do well at problem solving at 3 am :)

Hope you enjoyed the pictures!

I know I enjoyed hanging out with my little pirates!

Redefining Spina Bifida!

We just got our "Redefining Spina Bifida" shirts the other day!!

We were so excited to get them!!

Nat & Audrey wore theirs to school today, so Bri and I decided to throw ours on and take some pictures...

Let's just say everyone was a bit silly, but hey that's life!

So here is the most amazing boy who just so happened to bring Spina Bifida to our lives...

And his FABULOUS "Big Sister"....

His adorable little sister...

And together we make up the FAMILY...

 that comes together to fight the fights, to live the life and to LOVE through it all!

So we didn't do such a great job of showing off our FABULOUS new shirts,

but we DID act VERY SILLY,

LAUGH A LOT

and HAVE FUN!

So there!

And THANK YOU to my fabulous staff member who didn't mind jumping in as the photographer so I could be in some of the pictures! Adore you JS!

Oh, and speaking of staff....

I just so happen to have an opening on our team....

We are looking for someone who understands special kids need special love, who isn't afraid to be silly and who wants to work with a fun, unpredictable and a little bit crazy family! If you know of anyone send them my way....