We all make choices. Â Some choices are easy, some feel hard, and others reallyÂ are hard. Â We have some really hard choices to make in the coming year (or so), and would cherish your ongoing prayers for wisdom and strength.
Yesterday we made another trek to Oakland to meet another new doctor – a pediatric neurosurgeon. Â The first time we asked to meet with him, he didn’t even want to bother speaking to us. Â He said he could tell just by reviewing Ryder’s chart that he is not a candidate for any form of surgical intervention with regard to his nerves. Â But that’s not good enough for us. Â We insisted that he examine Ryder in person first,Â andÂ then make a determination. Â And if the answer remained the same, so be it. Â But we couldn’t just sit back and take him at face value, left to wonder “what if?“.
Most of these appointments end the same way. Â The doctors ask Ryder a bunch ofÂ questions, watch him demonstrate what he can and can’t do, and then they say “Well, this sure is mysterious! Â Just keep doing what you’re doing and we’ll see you in six months.” Â It’s easy to walk away from an appointment like that with our hope of recovery still in tact because no one who has said he’ll never improve has taken the time to explainÂ why they feel that way.
After noting that our warrior’s right hand is significantly smaller than his left hand, Dr. Pang spent nearly two hours drawing diagrams and playing and replaying Ryder’s original MRI footage to help explain his belief that it is highly unlikely that Ryder will see any more recovery. Â He had some very tough findings to share, and did so with as much compassion as possible.
I’ll spare you all the medical mumbo jumbo and summarize… (Please bear with the military theme that came about by accident.)
Basically, Ryder’s immune systemÂ mistook his common cold for a nuclear attack. Â It rallied so many troops that they ended up fighting amongst themselves and decimated their own capital city, otherwise known as his spinal cord. Â (He is, after all, a Barr. Â We don’t do anything halfway!). Â Unfortunately, the portion of the spinal cord that sustained the most damage is the innermost part that contains the most important data. Â And the length of the affected area is so great that it has left us with no reinforcements. And while the muscles themselves still retain the ability to get stronger, the nerve endings that plug into the muscles can only go so long without hearing from the Commander (or receiving messages from the brain) before they die. Â So while other kids with this same affliction are having surgeries that borrow nerves from other places to bridge the gaps and retrain the brain, we have nothing left from which to borrow.
This is devastating news.
And so we stand at another fork in the road. Â The way I see it, we have three choices. Â We can 1) take a knee… end the war…Â give up. Â Or 2) we can believe this one doctor is correct. Â We can continue with therapy for the time being, and make plans that could include amputation (yes, I said it). Â Or 3) we canÂ fight like hell to find another way.
I’ll give you one shot to guess which road we’re marching down…
WeÂ will continue with therapy because it’s still beneficial. Â And we will be seeking a second and third opinion. Â Not because we believe the diagnosis will be different, or because we’re waiting for someone to tell us only what we wantÂ to hear. Â But because we believe it’s our duty as his parents to knock on every door and try to get information from as many different perspectives as possible before we make any unalterable decisions.
And we will continue to pray because we believe in the power of a mighty God who created entireÂ galaxiesÂ with a single thought. Â We can’t waste time or energy asking “why?” (except for yesterday in the parking garage, sobbing into my husband’s chest… but I’m only human.). Â Instead we’ll ask “what’s next?” andÂ wait toÂ see what we can learn (about ourselves, about God, about medical technology, etc.) and what we can teach others.
God, the Great Physician, and the fiercest Warrior of them all, created this little boy and had a plan for his life even before it began. Â He hand-picked Ryder especially for us. Â And with His help, we’ll make it through this… whole and healed, floppy, or one-armed, we’ll win this battle because we’re not giving up.
If God is for us, who can be against us? Â (Romans 8:31)
Please continue to remember our family, specifically our precious fighter, in your prayers. Â He is such an inspiration to so many… he hasn’t given up hope and works so hard every day. Â And he is encouraged by knowing he has your support.