we took zion in to see his special care doctor at the hospital a little over a month ago. it was time for his regular check up, the week of his second birthday. We have been so incredibly proud of him, so impressed by his growth, so amazed at all he is. whatever he is doing, that is our normal. and his normal is perfect to us, because we just couldn’t love him more. but all it takes is one play date with his friend, hazel, or one interaction in the back yard with the neighbor baby, dewey b., to make us realize that our normal is not everyone else’s normal. There are one year olds far more advanced than zion, and despite over a year of physical and occupational therapy in our home, zion still doesn’t walk. and when he does take a few steps, he walks on his toes, like a ballet dancer.
and yet, I’m the proud, blind mommy who just thinks her baby is the best thing in the world (because he is, duh.) and my blindness keeps me from seeing the ways I may be able to know him more, to love him better. and so I went into the 2 year check up expecting the doctor to echo the things inside my head: “oh wow! look how good he’s doing! he’s amazing! he is exceeding our expectations! you would never know he was almost 3 months premature and had a brain injury!! . . . ”
and we did hear one of those – you would never know zion was premature when it comes to his size. little man is BIG. and growing leaps and bounds by the week. but then she said something I wasn’t ready for. something I remember reading as a major possibility in his medical report when we adopted him. “ok, so I think it’s obvious to everyone that zion is not developing like he should be. his leg muscles are so tight that he can’t stand flat on his feet, so even if he could walk, he would not be walking the right way. I’m going to wait for 6 months to officially diagnose him, but . . .” and then she said it.
“I think it’s time for us to start talking about Cerebral Palsy.”
an hour later, we found ourselves in the clinic in the hospital that makes leg and body braces and prosthetics, getting zion’s legs casted so they could custom make him a pair of leg braces that will hold his feet at a 90 degree angle to his legs. the braces have taken about a month to be made, and just a couple of days ago (after a long travel wedding weekend) we found ourselves driving him to the hospital to have him fit for his braces, or “AFO’s” (ankle foot orthotics) as they call them. on the way, Jeremy held my hand as he drove and said, “this feels big. this is the start of a whole new chapter.” I cried, and texted a few loved ones and asked them to pray for us and for him. the braces essentially will force zion to hold a painful stretch that he has never had to hold before. I was afraid he would suffer and that he wouldn’t understand. and if I’m honest, I was afraid I would feel the same way. this little amazing son that we have been blessed with has brought us more joy than we ever could have imagined. he has been a tangible experience of the love of God to our family. and with a shunt and the constant risk that he will need another life-saving brain surgery at any moment, I just ache over the possibility that he would have another life-long battle on top of his current one.
so these are the days when I choose to talk to myself instead of listening to myself. when I listen to myself, I hear that this all feels hopeless and sad. that it’s not fair that other children are running around healthy without a shunt in their brain and with able bodies and zion is not. I hear that God doesn’t love us as much as other families because of what we have had to suffer through. but when I talk to myself, I remind myself of my loving Father, who knows me and still comes toward me and loves me anyway. I remind myself that He made Zion and held him together for months before I even knew he existed. I remind myself that He has healed before, and when he doesn’t heal, he is enough. I remind myself that Zion ultimately belongs to God, that I ultimately belong to God, and that this life is not all there is. if the only hope I have is that this life can be made perfect in the here and now, and that we won’t have to suffer, it’s all hopeless. especially for zion. but the thought that this isn’t all there is, that zion could be a young, healthy man someday running free and wild with no fear of danger, pain or surgery? that gives me so much hope. and as our pastor kevin said a couple of weeks ago, I will willingly make sacrifices and not expect perfection in this life when I know what’s coming in the next one. this is just the first course, just the arugala salad. but I’m reading the menu, and the next three courses are going to be absolutely amazing.
zion is looking at an intense 6 months coming up, with 3 therapy appointments nearly every week, AFO’s being worn every waking minute of the day, and the potential need for other interventions in the future. all while keeping up with his neurosurgery appointments and routine MRI’s. It’s a lot for the little man, and for us. and we welcome your prayers, patience, and unconditional support as we navigate this whole new chapter that God has written into our story.