cerebral palsy

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In the darkness of night

Between Judah and Malachi we never quite know what our nights will be like.  Two nights ago was Malachi’s turn to wake in the night.  And apparently last night was Judah’s turn.

For almost 4 years Judah was a perfect sleeper – often 11-12 hours each night. But when these seizures started in May they greatly affected his sleep. For awhile we had the seizures under control but a few weeks ago he began waking again in the night – agitated and having irregular brain activity, sometimes seizures.

Last night was no exception. By 1:00am Judah was awake…and continued to remain awake and quite unhappy til 5:45 this morning.

But in the middle of the night while holding Judah in my arms I had a sweet time with the Lord. Simply chatting with Him about the fact that a miracle is what I’m believing for…Picturing myself seeing Jesus face to face and setting Judah in His lap.  Sharing with Him that it seems the ONLY way we’ll see victory in this is from a supernatural touch. We’re doing all we can in the natural – he has a 24 hours EEG on Monday. Doctors are doing what they can to solve this. But even the smartest doctor cannot repair the damage in Judah’s brain.

But God can! I began to replay the miracles we’ve all read about. The man near the pool of Bethesda. He had dealt with his infirmity for THIRTY-EIGHT years! Much longer than Judah, but that wasn’t too hard for our God!

How about when Peter and John saw a man begging by the temple? He had been lame since birth! Much longer than our Judah! Yet he rose up and went walking and leaping and praising God!

How about the blind men? Their vision was far worse than Judah’s yet they received sight!

None of these things intimidated Jesus. None were too hard for Him. And neither is my Judah! Over and over these stories played in my mind. Over and over I replayed the many times He’s already done amazing works in Judah.  When the doctors told us he may not live – he lived.  When they told us he’ll be brain-dead, blind and deaf he exceeded their expectations.  When these seizures did begin to occur, the neurologist said he was more amazed that Judah hadn’t been having them all along.  Given the amount of damage in Judah’s brain any doctor would have assumed he had been having them for years.  The miracle of Judah’s speech – that his favorite words are Jesus, Hallelujah, Holy, Glory!  How alive his spirit is! That songs of praise and worship rise up out of his little spirit on a daily basis…

…And the confidence grew…and continues to grow….that truly, all it takes is one touch — Just one touch from my Jesus.

With a leap he stood upright and began to walk; and he entered the temple with them, walking and leaping and praising God. ~Acts 3:8

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Fake Diamonds

Judah had 10 seizures last night……. 10!!

…we’ve had two hospital stays….tons of tests…tons of doctors….medicine with plenty of nasty side effects….and yet still, he had TEN!  … in ONE night!
Know what?!  It made me mad.  And sad.  But mainly mad…
I don’t like feeling like we took 10 steps back. I don’t like seeing my sweet boy go through this. I don’t like that we’ve spent so much time and energy and emotion in search for answers yet have none.  I don’t like seeing Judah hurt, seeing Chad hurt, seeing my kids hurt…and I don’t like hurting myself quite frankly.

After throwing a pity party for far too long today I finally snuck away for some alone time with the Lord…Didn’t even know where to start but grabbed my Bible, plopped onto the bed, and opened it up.  Out fell some loose papers I’ve saved over the years.  They’re filled with prayers that have been prayed over us, promises spoken, notes I’ve saved, etc.  What caught my eye was a page of ripped out notebook paper with my scribbled handwriting from 3 years ago.

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“I want to hear the heart of God – know His thoughts toward me. I must obey His correction in my life.  No running. No talking the talk. I want to be the real deal – heart burning for Him more than anything or anyone else.  Fear of Him bigger than fear of any man! Desire for Him bigger than any desire for His benefits. I want to be addicted Him, His love, His friendship, His presence, His praise, his voice, His Word. Over-flowing out of the abundance of Jesus inside of me….”

You know what I was longing for??  Jesus.  Just Him.  His heart.  His thoughts… Him…But these past couple weeks I’ve been longing for answers…longing for results….longing for a quick fix, as quickly as possible, like fix it yesterday already, God!  And not finding the results. Not finding the answers.  Coming up short, hurting, frustrated…trying so hard to simply trust like a little child again, yet really struggling.

I was reminded of an embarrassing fiasco from a couple months ago when I spent TWO weeks searching for my wedding ring.  It consumed me. I was thinking about it constantly and looking for it everywhere.  I knew I had lost it in our home so I tore our place apart looking for it.  Every drawer, every cupboard, every couch cushion and it was nowhere to be found.  And you know what is so embarrassing about this?  IT’S NOT EVEN REAL!!!  Good gravy!!  I gave my real wedding ring away years ago!  So here I was wasting my thoughts, energy, and time on a ring that holds no nostalgia, no precious memories, and certainly no eternal value…nothing! I could hop online and order another fake one for under fifty bucks. ha! Come on now, Krista. Get you act together!
Jeremiah 29:13 says “You will seek me and find me when you search for me with all your heart.”  Well, embarrassing as it is, I certainly know what it looks like to search for something with all of my heart…but have I really searched for Jesus with all of my heart?  Or only His benefits? Or only his promises? Or only his healing for my boy?

My flesh wants to retreat.  Wants to check out.  Wants to say, “I’m done. It’s too hard.  I don’t know how to stand any more, God! It’s taking SO long!”  But today, my heart is longing to “throw off everything that hinders and the sin that so easily entangles” (Heb 12:1) and do a search… not for a ring…not a google search for every remedy under the sun or every cause of seizures known to man.  But a treasure hunt for something more…to begin anew with a search for just Jesus.  Only Him.  Nothing more, nothing less.  With the confidence of Matthew 6:33 – “but seek ye first the Kingdom of God and His righteousness, and all these things shall be added unto you.

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“For the vision is yet for an appointed time; but at the end it will speak, and it will not lie. Though it tarries, wait for it; because it will surely come, it will not tarry.” Habakkuk 2:3
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Thank YOU!

Our hearts are so overwhelmed with thankfulness for all of you who made Judah’s BBQ FUNdraiser possible!

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Friday night was so special to our entire family!

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 We feel honored by the number of people that arrived to support our little Judah.   What a wonderful treat to spend an evening chatting and playing with so many friends.

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Planning a fundraiser for my own child is something that 10 years ago I never would have pictured would be in my future.  It’s completely out of my comfort zone and a very humbling experience.  Robin, Tracy, and Judy there is no way I could have planned this fundraiser alone.  I’m in awe of the way you took my small idea of a family bbq picnic and created something big and exciting.  All-Stars 4-H – YOU ARE AWESOME!  They helped prepare ahead of time, helped set-up, helped serve, and helped clean-up.  One of the families sold and delivered “to-go” meals to their neighbors – if I remember correctly it was close to 30 meals they delivered!  

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 And to all of you who volunteered your time, donated raffle items, and donated food and other necessities – THANK YOU!  This was not possible without you!

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Because of the donations that came in we are able to continue needed therapies for Judah.  The money from Judah’s account covers many things for Judah.  Here are a few examples.

* Anat Baniel Method – we are so thankful we found Josie Davenport in Gainesville, FL.  It wasn’t until we began visits with her that Judah began showing much interest in movement.  When we are consistent in our monthly visits we see the most results.  The difficulty has come in being consistent.  The cost is simply too high for us to pay out of pocket.  Our goal is 5 days each month.  That cost is therapy is $600 plus gas, hotel and food.

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* Ophthalmology – The best way to monitor whether Judah’s shunt is working is to check his optic nerves on a yearly basis.  We were referred to a great doctor, but he is not covered by our insurance.

* Optometry – Judah’s vision is checked every 6 months at a wonderful clinic in Tampa.  Their practice is not covered by insurance.  Nor the cost of glasses and replacement lenses.

* Pediatrician – Our favorite pediatrician is also in Tampa and not covered by insurance.  He’s been a tremendous encouragement to us.  First, he explored deeper into what may have caused the brain bleed instead of focusing his attention only on what may have prevented it.  Through genetic testing he did find Judah has a double chromosome linked to bleeds.  He also started Judah on nutritional supplements, b12 shots, and BIGGEST OF ALL -the hyperbaric chamber!!  We LOVE our hyperbaric chamber!

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On a more personal level this doctor’s son also had a brain bleed as an infant.  Because of that he’s able to relate to us differently and is understanding of my emotional moments. 🙂  We’ve only been able to visit him a few times as the cost is over $300 a visit.  But we are excited to see him again soon, hopefully before little Malachi arrives. 🙂

Because of your generosity $2,472 was given Friday evening at the event.  More donations came during the weekend bringing the grand total to $2822!!!  Wow!  We are in awe!!

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Thank you!  From the bottom of our hearts!  THANK YOU!

“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