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and the Birth of Another…

Our Story

Sometimes it takes death to be reborn.

Sadly, it took the death-expecting disease of Hunter Syndrome for my walk with Christ to be reborn.

Let me back up.

I became a Christian at a young age. Frankly, I don’t even remember all the details, but I’ve let go of the necessity for that. What matters is that at some point in my understanding, I accepted Christ as my Savior.

But like many Christians, I ebbed and flowed in my commitment. I never questioned my beliefs or my faith, a gift for which I am incredibly thankful and undeserving, but I was incredibly lukewarm at times.

“I know your works, that you are neither cold nor hot. I could wish you were cold or hot. So then, because you are lukewarm, and neither cold nor hot, I will vomit you out of My mouth. (Revelation 3:15-16, New King James Version)

That was certainly not a verse I was reading on a regular basis.

So when Case was diagnosed, thankfully again, my faith that God existed, that He loved me, that I was going to Heaven, that He had a plan – none of that ever wavered. But what I started to realize was – what does that look like in real life?

If I believed in God’s Word, in what I said I believed, then why was I so sad? Why was I anxious about what would happen to Case, to our family? Why was I worried about the financial burden, the emotional toll, the life of this child?

Here were the promises that God had made me about all of those things:

Let not your heart be troubled; you believe in God, believe also in Me. In My Father’s house are many mansions; if it were not so, I would have told you. I go to prepare a place for you. And if I go and prepare a place for you, I will come again and receive you to Myself; that where I am, there you may be also. (John 14:1-3, New King James Version)

“Therefore I say to you, do not worry about your life, what you will eat or what you will drink; nor about your body, what you will put on. Is not life more than food and the body more than clothing? Look at the birds of the air, for they neither sow nor reap nor gather into barns; yet your heavenly Father feeds them. Are you not of more value than they? Which of you by worrying can add one cubit to his stature? “So why do you worry about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin; and yet I say to you that even Solomon in all his glory was not arrayed like one of these. Now if God so clothes the grass of the field, which today is, and tomorrow is thrown into the oven, will He not much more clothe you, O you of little faith? (Matthew 6:25-30, New King James Version)

Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus. (Philippians 4:6-7, New King James Version)

Then little children were brought to Him that He might put His hands on them and pray, but the disciples rebuked them. But Jesus said, “Let the little children come to Me, and do not forbid them; for of such is the kingdom of heaven.” (Matthew 19:13-14, New King James Version)

“And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away.” (Revelation 21:4, New King James Version)

So… if I believed that heaven was real, that I was saved, that Case, not understanding his Maker, would go to heaven as well, that God would provide for our needs, why was I so distraught?
Was I mourning the loss of my dreams for him? Yes. But God could fashion a reality that was beyond any dreams that I would have thought.

Was I mourning the impact this would have on my two other children? Yes. But they could become better people because of this.

Was I concerned over the pain, both physical and emotional, that Case would feel as the disease progressed? Yes. But God had shown himself sufficient to sustain me, an adult, through times of terrible physical and emotional pain; how much more could He sustain a child-like innocence?

Was I concerned over the financial burden that this would create? Yes. But God would show his provision to us in both daily miracles and the generosity of those around us.

Was I incredibly sad for myself, that I would have to endure watching him fade from me? Yes. And I realized that that was my biggest sadness. That I would lose this funny and happy and laughing and singing child.

I poured all of this out over and over. When I cried, I pleaded with God for peace. And God took all of these things and formed a better life for our family. Not only that, He gave me more than I had ever hoped for.

By early 2010, we had amassed a large amount of medical bills, both from Case as well as from Tyson’s seizures. God used that situation to allow the kids to qualify for TennCare (Tennessee’s Medicaid) through a process that specifically takes into account those with high medical bills.

Having TennCare provided for us in many ways. First, it covered equipment that Case needed (specifically his main stroller and its accessories) that would have been over the coverage amount of our regular insurance by several thousand dollars. Second, it covered his diapers and wouldn’t you know it, God had timed it up perfectly. Case was just outgrowing the largest “regular” diapers they make (Huggies size 7) and would need “medical” diapers that cost a lot more. So now, TennCare would cover those as well. Finally, it covered personal care services for Case. This is a CNA to help him perform activities of daily living (like eating, dressing, toileting, grooming, transferring) that he otherwise would have been able to do at that age, but because of his condition, could not do normally. By the time this service was approved, it was incredibly needed because I generally could not leave Case, even in a gated room, for fear that he could hurt himself or someone else. He was climbing furniture a lot, hitting his brothers (with heavy toys, not just the regular brotherly pats), and taking care of what he needed did not really allow any attention for our other boys or even making dinner.

Now, that is not to say that obtaining coverage for those items was easy. There were several appeals that we had to file and hearings to attend, legal research to be done, lots of paperwork, applications, and legal wrangling, etc. But, that is where God just provided again. He had considered all this well in advance. Wouldn’t you know it, I was a lawyer and just had no issue with writing those kind of letters, filling out that paperwork, making those arguments over the phone, and making legal arguments at an administrative hearing.

We also were shown the incredible love of God through friends who helped us with meals, watching the boys, organizing and attending fundraisers. Trying to be such self sufficient people all our lives never allowed room for God to step in and show us just how amazing He was and how He could work in His people. I still just sit and marvel at how whenever a need became urgent, it was met, and not just barely met, but usually met in an overflowing way.

And probably one of the best examples of God’s provision … the timing of the clinical trial. We had heard of the impending potential clinical trial not long after Case was diagnosed. But, we had also heard that it had been on the horizon over and over and never come to fruition. Well, we knew Case could not participate until he was 3 years old so we went to have him tested around that time and wouldn’t you know it, he was “too smart” at the time. The researchers had to be certain that only boys with the brain impact of the disease were involved since it was trying to halt that decline. But at that same time was when we became certain that his brain was impacted, just not enough yet. So we knew that we most likely would have to sit and watch him lose skills until he might qualify. Well, after 8 months and hard work by his school and therapy team, Case still seemed to be doing well, but his behaviors (ADHD, unsafe, etc.) had become more pronounced. But within a month’s time, he had fully qualified for the trial and dates were set for the surgery.

We didn’t even have to endure one of the more obvious signs that his cognition was declining – severe stuttering – until after he initially qualified and only had one step left, that ended up (through a family foregoing the slot – can you believe the mountains God moved for Case to be involved?) happening within only 2 weeks. My expressed hope when the process started was that Case would start the clinical trial before Christmas of 2010 and wouldn’t you know it, his port  surgery was the week before Christmas and his first dose was January 3.

God paved the way, all the way.

I don’t know why we’ve been so blessed. All I know is that I’m obligated to be faithful. He has certainly been more than faithful to me.

Last modified: May 17, 2016

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