One year…..how is that possible? One year since we watched as they wheeled Ryan down the hall to surgery. One year since they opened up both sides of his skull and placed 88 electrodes directly on his brain. One year since he spent 10 days in the pediatric ICU with tubes and wires everywhere. One year since we sat at his bedside, 24 hrs a day, praying and pleading with God for those three surgeries to stop his seizures. One year since they removed most of his right frontal lobe and gave him three craniotimies. One year and the seizures persist with a vengeance.
My heart is heavy with the thought of putting him through a fourth brain surgery, but I know it has to be done. Travis and I promised Ryan and each other we would do everything possible to save our little boy from these nasty seizures, and this is our last option. And they have literally destroyed his brain leaving him as a one year old in a big eight year old body. They have taken his ability to speak, to use his hands correctly, to walk without faltering, to live any semblance of a normal life. And though the seizures have wreaked havoc on his precious little body, they have not destroyed his spirit. Ryan’s seizures have not taken away his smile, his giggles, his ability to love in his own little way and to receive love. They have not destroyed his ability to go to school everyday, interact with people and live a full life. He may not live life like most of us, but Ryan does have a life full of people who love him and think the absolute world of him. He lacks for nothing because he is loved, spoiled, doted on, prayed over and accepted just as he is. I like to believe Ryan is changing the world around him, causing people to see that in spite of being broken, he has a purpose and God is working in him in ways we simply can’t see.
Surgery didn’t stop his seizures, but it did put a smile on his face and a giggle in his belly that we are enjoying every single day. I have no idea what the future looks like for Ryan, how long God will let us keep him here with us, what will happen if his seizures stay out of control. I can worry and fret about it all day if I let myself. Instead, every single day, I have to focus my mind on all the beauty Ryan has brought into our lives, how he’s changed us to realize God has a plan much bigger and better than we could ever have imagined. Because of Ryan we dream of starting Ellisbrook where disabled adults can live with families on an acreage with animals, a greenhouse, a garden, living out their lives being loved, accepted, cared for and wanted. And we trust God will provide the team, the finances and the path in his timing. It’s exciting and scary all at the same time, but we believe with all our hearts God would not have put this dream in us if he did not intend to make it a reality some day.
One year….and although Ryan has not improved medically, he is doing exactly what he was sent here to do. He is filling the world with joy, teaching others about acceptance, living his life with purpose the only way he knows how……exactly as God intended him to be.
my sweet little sleeping angel