Special Needs = Very Special Siblings

“Mom, you can read this if you won’t cry.”

I spun around from my lunch preparations in the kitchen to find Josiah handing me a paper he wrote for an English assignment.

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He had been asked to write a “description” and he chose to write about little Judah.

Here’s what he had to say:

“The baby this description is about is my baby brother, Judah.  Judah is more of a toddler.  He’s almost two.

Judah had a brain injury when he was five weeks old.  He was rushed to the hospital and the doctors didn’t give much hope to his survival.  But he lived!!  It would probably be easier to call him a toddler if it wasn’t for his brain injury. 

Many people have helped our family over the last year (like the therapists) and sometimes people we don’t even know!  We got a hyperbaric chamber through a fundraiser that we got more than enough help with and we have vision therapy every two weeks. 

Judah has been getting better every day thanks to God and everyone that helped.”

There are moments like these that I get a little glimpse into how my children are processing this journey.  For instance, while reading Josiah’s paper I realized for the first time that he was aware of the fact that had Judah not had a brain injury he’d be a toddler by now.  I kept my composure and held back tears, but inside my heart was breaking.  I don’t like that my children have had to walk through this.  It’s one thing to experience pain as an adult.  But my goodness!  They’re so young; yet they’re walking through a season that requires such strength, faith, perseverance, selflessness, and a lot of patience.

I cannot express fully how proud I am of my children and the strength they’ve shown these past 20 months. I’ve watched them treat Judah with such love and acceptance, as if nothing ever happened.  I’ve proudly observed them around the home as they’ve stepped up to the plate and helped Mommy and Daddy out more than ever before.  I’ve snuggled when they have needed a little extra one-on-one time and an opportunity to share their hearts.  I’ve listened as they’ve asked questions…and I’ve paused at times at a loss for words, admitting I was seeking answers to those very same questions.  I’ve cried with them as they’ve revisited the memories and admit they miss the way our lives used to be.  And I’ve smiled…as I’ve observed compassion in their hearts grow for other children that have special needs.

There’s a desire burning strong in our hearts to reach out and minister to other “special needs families.”  More and more we are realizing that the need is so much greater than merely reaching the child with special needs.  And it’s more than encouraging their parents.  It’s about reaching the entire family!  Where there is a child with special needs, there is most likely some very special siblings as well.

Josiah and Judah

Isaac praying over Judah

Ellianna and Judah

Rhema snuggles with Judah

Addie loves her baby brother

“The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’” – Matthew 25:40

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100th Dive

Last night we completed Judah’s 100th dive in the hyperbaric oxygen chamber.  What a great feeling!

We continue to see improvements every single week.  Glory to God!  The most noticeable improvement has been hearing Judah imitate sounds.  He’s giving kisses and imitating the sounds animals make.   The other night I said, “ha, ha, ha” and Judah copied it perfectly.  It’s so much fun!  And it shows just how much potential Judah truly does have.  All things are possible!  We believe it!

Another improvement – Judah is not as sensory defensive in his mouth.  He’s putting his toys and fingers into his mouth.  One of our therapists recently gave us a little vibrator used in speech therapy.  This morning he grabbed it out of my hand and put it in his own mouth.  He allowed it to sit on his tongue for about 5 seconds and then giggled.  This is a huge improvement!  And a necessary one for him to be able to tolerate textured  foods.

This morning we had a great appointment with our pediatrician.  Our Dr. commented he felt that Judah was at 7 or 8 months in development.  I was a little surprised by his remark.  For months and months Judah had been at about 3 months in development.  For some reason it hadn’t crossed my mind that he had moved up on the charts.  So the Dr. pulled up the checklist for 9 month development onto his computer.  Judah passed almost half of the questions.  He then pulled up the checklist for 6 month development.  I was able to answer “YES” to every question on that list!  It was such a fantastic feeling!  While this is still a 12 month delay, it is progress.  And for that, I am thankful!

Here are our biggest prayer requests right now.

*Judah will enjoy textures and be able to swallow them.

*He will learn to pick up food with his fingers and and to learn how to self-feed.

*He will learn to drink from a bottle or a cup.

*His balance will improve and he will be able to sit unassisted.

*He will desire to move!   He will enjoy being on his tummy and discovering how to scoot around the room.

*The movement in his eyes will cease.  His vision will improve.

 

“As soon as I pray, you answer me; you encourage me by giving me strength.”  Psalm 138:3

All Things New

Life is busy.  Life with 6 children is busy.  Life homeschooling those 6 children is busy.  But my goodness, life with a child who has special needs is a new definition of “busy.”

In many ways I feel like my life has been a whirlwind these past 18 months.  There are days I find myself asking, “What did ‘normal’ life ever look like?”  I can’t remember. . .

I recently had one of those crazy mom days. . .Moms, you know what I’m talking about.  It was one of “THOSE” days. . . life was spinning all around me and I felt like I couldn’t catch my breath.

“Mom, can I have snack?”

“Mom, can you help me with math?”

“Mom, I need a spelling test.”

“Mom can I have another snack?”

“Mom, when’s lunch?”

“Mom!!!!!  I went poo poo!!!”

I was trying to answer a million questions, referee fights, help with school work, make meals; but all the while I was also trying to make sure I was taking care of Judah’s needs.  Feed Judah.  Do therapy with Judah.  Spend a couple hours in the chamber with Judah.  Feed Judah again.  More therapy.  More chamber time.  More feeding.  More therapy.

So what did I do?  I wish I could say I grabbed my Bible and a worship cd and went to my prayer closet.  But oh no.  Not this day.  I hid!!   In the bathroom!  I locked my bedroom door.  I locked my bathroom door.  And hid!   And this time it wasn’t my kids that found me.  It was Chad!  I heard our bedroom door open, then watched our bathroom door slowly creep open.  There he was, my handsome husband, discovering me, his bride, the mother of his children, hiding in the bathroom with coffee in one hand and ice cream in the other.  ha!

So yes, my life is busy.  But in some ways it really has slowed down.  No really!  It has!  At the beginning of this year we made a conscious decision to slow down a bit.  At one point last year I was taking Judah to as many as eight appointments each week.  That usually included at least one trip to Tampa.  But you can only run at that pace for so long before something has to give.  We started noticing some symptoms in my health that needed attention.  And we also noticed our children needed their mama home again.

Please pray for us as we seek the Lord as to what therapies we should be doing right now and which doctors we should be seeing.  There are so many opinions out there of what is best for my son.  I want God’s opinion!  He knows what Judah needs and He knows what our family needs.

He is making all things new.  In my heart.  In my home.  In my family.  And in Judah.

Thank you for loving us, encouraging us, and praying for us.  Your prayers are what carry us through!

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And He who sits on the throne said, “Behold, I am making all things new.”