"Jesus looked at them and said, "With man this is impossible, but with God all things are possible."
Matthew 19:26
Two months have passed since my last blog post. Two months of provisions, results, gratitude, fear, anxiety, hopelessness, and tears. How can all of those things co-exist? Easy...
This all began back in January of this year with Caed's Nebraska team concerned with his lack of growth. It is a very common need in Short Gut kids, so they encouraged us to get an appointment with a Pedi Endocrinologist as soon as possible. That first step seemed "simple" enough. (insert laughter) Getting appointments with specialists, particularly when there is only one Pedi Endo team in the Lubbock area was...a battle in itself. We felt "time" was our biggest enemy, so booking an appointment 3 months out was so disheartening. From that point on, it seemed as though each and every step was not just an uphill journey, but rather a steep vertical climb that continually tested our endurance and belief that we would ever make it to the top.
For the past 2 months, insurance has continued to deny coverage for Caed's growth hormone shots. "Short Gut is not an indication for the need for growth hormone therapy." I wanted to scream! And on more than one occasion, I had to apologize to the innocent drug rep for simply delivering a message. I knew it wasn't their fault. Yet I vented to them often! "How can just being short stature warrant coverage, but when you've tragically lost 90% of your GUT and suffer from malabsorption...sorry, we can't help you!?" I was angry! SO very angry!
Maybe it seems silly in comparison to other major (life-threatening) issues Caed has gone through or others are currently fighting. Yes. In many ways, it seems so. It's "just growth." Otherwise Caed is healthy and home and acting as any other normal 15 year old boy. I knew there were worse things. We've lived through so many of them. But...this time it was different. This new issue was affecting him emotionally. We saw the change in Caed about a year ago. His personality changed. Instead of seeing a confident, energetic, funny kid...we began to see him withdraw. The gap between he and his friends (physically) was widening by the day. He knew....and it hurt.
A week ago we were told "the door had been officially closed with the drug company, " who had been working with us this summer while we waited for insurance to make their final decision. Several appeals had been made, but to no avail. Caed had been graciously given 7 weeks of free shots this summer, roughly 42 pokes he's endured. We have been so grateful! And.....drumroll please.....he has grown 1/2 inch in the past 8 weeks! :) May seem like a rather insignificant number, but it is HUGE to us! You would have thought I told Caed he grew 5 INCHES this summer....the way he held up his head and chest and confidently walked away. ANY growth means more to him than any of us know. Oh, how he has struggled!
Caed's next endocrinology appointment is this coming Tuesday. What was supposed to just be a "3 month growth check," would turn into a PLEA from Todd and I to our doctor. "Is there anything else you can do? Any other avenue we haven't tried yet? Please help us get coverage!" This doctor would be our last hope. I had already told myself that until she said the words NO...I would continue to have hope. Yet, having heard that word over and over this summer, my faith was small, so so small. I knew in my heart that if this door completely closed, God was still in control. Even though I couldn't wrap my brain around WHY in the world He would allow Caed to get 7 weeks of therapy started, only to be ultimately denied. What would have been the purpose, Lord?
Caed has been amazing with his shots this summer! Throughout his life, I have always been the one to do the hard stuff, the pain-filled necessities that he has needed (medically). Not anymore. Our little boy has sure grown up. I never once had to remind him to do his shot. Every night he would gather up all he needed and administer his shot to himself (alternating between both legs and arms). This kid is so used to be sticked and poked and prodded. Needles don't faze him in the least, but I was more impressed with the responsibility he took to do it all himself. I knew the reason. These shots were not just normal shots to him. With every needle stick, it represented HOPE to a kid who is not just suffering physically, but more importantly, emotionally.
We've discussed in length with Caed that these shots aren't magic. He isn't going to turn into the Hulk overnight...or ever! These shots will help get him to where he should be genetically. We have told him if he wants to build muscle and definition however, it's going to be totally up to him! The past week we have seen a more mature, self-driven side of Caed than we have ever seen before. He gets up early, eats breakfast, then has begun a pretty tough workout regimen (Insanity) in our garage. Todd has been able to be his personal trainer and teach him techniques, etc... Even when his dad is working, he still continues to get up every morning and push himself, alone. He's a tough kid! Outwardly he may not look it, but internally he is SO VERY strong.
We have watched Caed work...hard! Yet my heart has wanted to fall apart. I knew what was on the horizon. No more shots! How would we break the news to him? Would he understand and believe that God still had him in the palm of his hand, and obviously had a "better plan?" Could we trust that God might be telling us "he doesn't need the shots...I'm going to help him grow MYSELF!" Yes! I knew I could trust God, period. I have seen him move mountains for Caed the past 10 years. I knew in my heart that everything would be ok....even though we couldn't see it.
My heart has been trusting God the past few weeks, not for the "YES, " but rather for the "NO."
...this morning my phone rang and it was the Endo dr. My heart stopped briefly when I saw the number, yet told myself, "they're just calling to confirm our appointment on Tues." (sigh...)
The nurse quickly said, "Hi, Lori, just wanted to let you know your insurance has approved the shots!" I sat silent and stunned. I didn't understand. Just last week I had several conversations with our case manager (as well as the denial letter that came in the mail) which all said "It's over. Caed's case has been closed!" HOW? WHY? The nurse simply said "there was some miscommunication, but we got it all worked out."
I hung up the phone as my hands continued to shake. Just this morning, Caed had "informed me" that he only had 6 days of shots left. My heart sank. I sat down and tried to explain to him that we didn't have anymore because insurance wouldn't cover it...and how we didn't have an extra $2000 a MONTH to pay for them ourselves. I tried to encourage him that Dad and I would talk to his doctor and see if she could try something else with the insurance company.
One hour. Just 60 minutes later God would show up BIG in our home today! He would remind us that there are going to be times that by human standards we would be backed into a corner with no way out. There would be absolutely nothing we, nor any doctor or case manger could do. He would put us in a position in which we had no other choice than to just HOLD FAST, not to our prayers getting answered the way we wanted, but rather just to HIM. Plain and simple.
I have cried a lot this morning. Tears of joy, yes! But rather tears of just...God being God. On Monday I posted something on Facebook that the Lord was showing me. It wasn't easy. In fact, it was down right HARD! When things around us seemed to be falling apart one right after another (trust me, we had a ((TOUGH)) week in many different areas in our family, not just Caed), I kept hearing from the Lord, through various people, the same message....
"Want ME! Not just the things I can do for you! Stop worrying about them. Slow down and just SIT in my presence! I can do exceedingly MORE than you can possibly imagine. It just may not be done in the way you think. Trust me."
I can honestly say that even though all the issues I had been worried about this week were still very present, I had peace. Not because I knew God would "fix" everything, but rather...just began focusing on Him, alone. Wow! Is there ever tremendous POWER in that!
"And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:7
Thank you God for not just answering some of our prayers this week, but more importantly in HOW you did so. It wasn't easy. It hurt. Yet in your infinite wisdom you knew...we needed a reminder of your POWER and SOVEREIGNTY. You knew you needed to get us to a place in which we had reached a 'dead end.' You had the events and tiniest of details of this summer planned out impeccably. Once again, with joy (and a little laughter), we can sit back and reflect on the past 8 months and see how it was perfect. I don't believe you simply "intervened" into a hopeless situation, but rather...you were there in every detail, in every step of the way. Your faithfulness has been abundantly evident in Caed's journey his ENTIRE life, yes even in the womb as you carefully and lovingly twisted his body into knots... You had a plan for his life! Yes, there would be pain and fear and sorrow. Lots of it! But you knew. You knew the magnitude of Caed's journey would impact so many people's lives. Jesus would be made famous and you would continually show us just HOW MUCH you love us. We have been face-down in the pit of Caed's journey so many times. We could have never imagined all the twists and turns to this plot. You are the author and YOU are so good! Yes, with every tear shed, YOU have been good. With every "no, " YOU have been good. Every time we cried out to you and no answer would come, YOU have been good. This journey has been long. This journey has not ended. In days ahead, more pain will come. Yet, YOU will forever and always be our GOOD LOVING AND FAITHFUL FATHER.
