I have spent some time looking over old CaringBridge posts about our experiences raising Ryan and how it has affected our entire family. I found this post from when we celebrated Sidney’s 6th and Ryan’s 2nd birthdays (both born on the same day). And everything I wrote is still so very true today. He might be bigger, he might have a lot more medical problems, he might have digressed in all the things he can do, yet he is as loved – if not more – than he was 17 years ago. It sounds like a lifetime ago, but it also feels like just yesterday.
I look back at the past and stand in wonder at all the things we have been through and accomplished in those 17 years. The one thing I can definitely say is this – God had our backs. The love shared between Travis and me and among our older kids…those are the blessings that saw us through each day. Yes it has been extremely hard, but at the same time, we know we are so very blessed to call Ryan our own.
Today Ryan turns two. I am reminded of how drastically our lives have changed since his birth. For the most part, our lives have changed for the better. We’ve learned that the world’s standard of perfection is completely opposite of God’s standard of perfection. I think back to last January…on a cold night as I laid in bed crying about all of Ryan’s problems and heard God say to me “He is as I intended him to be.” Those words have changed my life.
Ryan is part of God’s perfect creation. No, he is not perfect in the world’s eyes, but to God, Ryan is completely perfect and He is happy with the boy I call my son. Ryan is a gift, and I am learning each day to find the joy in being his mom. I’d be lying if I said I never grieve all that Ryan will never be. As Ryan gets older, we’ve noticed that people are really starting to stare and notice that he is different. I struggle often with having a two-year-old who still cannot walk, who still cannot scream “NO” to me, who still cannot use his hands correctly, who still neglects his left side, who still suffers from seizures, who has major sensory processing problems. I could go on and on about Ryan’s disabilities.
But instead, I choose to focus on all that Ryan is. He is the most loving child I have ever met. He loves to greet people with lots of kisses; he loves to play peek-a-boo and will do anything for attention. He loves it when we copy his facial expressions and movements. He loves to giggle and be tickled. He loves to play with his siblings. He might not be “perfect” to a lot of people, but he could not be any more perfect to us. We love him to pieces and wouldn’t trade him for anything.
God has showed us that His love reaches us in the lowest of lows. Through our toughest days, grieving the loss of a normal child, we’ve felt God’s perfect peace come over us. We’ve learned to rest in His arms and allow Him to change our attitudes. We’ve learned to let go of our own expectations and wishes so God can fill us with His perfect plan for our lives. We pray continually that God will use Ryan and us as his family to impact other’s lives and bring people to Christ.
So as we celebrate Ryan’s birthday, we realize that Ryan is more than a two year old who happens to be handicapped. He is God’s perfect creation, placed in the perfect home for him, perfectly loved and accepted as he is. Ryan has many uphill battles to overcome in the future, but we’ve learned to celebrate every accomplishment. They just mean so much more when he has to work so much harder to reach a milestone. The day he finally walks I will be crying a river because those small things in life take on a whole new meaning in the life of a disabled child.
Happy birthday, my sweetness! I love you so very much, Ryan, and you are my special baby. You’ve changed my life in so many wonderful ways, and I wouldn’t trade a day with you for anything this world has to offer. I thank God for the privilege of being your mommy and look forward to the days ahead with you. I pray this next year brings you many happy days and new adventures. You are loved!
And this beautiful story about a man named Kevin… I wish I knew who wrote it, so I could give them credit –
GOD LIVES UNDER THE BED
I envy Kevin.
My brother Kevin thinks God lives under his bed. At least that’s what I heard him say one night. He was praying out loud in his dark bedroom, and I stopped to listen, “Are you there, God?” he said. “Where are you? Oh, I see. Under the bed…”
I giggled softly and tiptoed off to my own room. Kevin’s unique perspectives are often a source of amusement.
But that night something else lingered long after the humor. I realized for the first time the very different world Kevin lives in. He was born 30 years ago, mentally disabled as a result of difficulties during labor. Apart from his size (he’s 6-foot-2), there are few ways in which he is an adult.
He reasons and communicates with the capabilities of a 7-year-old, and he always will. He will probably always believe that God lives under his bed, that Santa Claus is the one who fills the space under our tree every Christmas and that airplanes stay up in the sky because angels carry them.
I remember wondering if Kevin realizes he is different. Is he ever dissatisfied with his monotonous life?
Up before dawn each day, off to work at a workshop for the disabled, home to walk our cocker spaniel, return to eat his favorite macaroni-and-cheese for dinner, and later to bed. The only variation in the entire scheme is laundry, when he hovers excitedly over the washing machine like a mother with her newborn child.
He does not seem dissatisfied. He lopes out to the bus every morning at 7:05, eager for a day of simple work. He wrings his hands excitedly while the water boils on the stove before dinner, and he stays up late twice a week to gather our dirty laundry for his next day’s laundry chores.
And Saturdays-oh, the bliss of Saturdays! That’s the day my Dad takes Kevin to the airport to have a soft drink, watch the planes land, and speculate loudly on the destination of each passenger inside. “That one’s goin’ to Chi-car-go!” Kevin shouts as he claps his hands. His anticipation is so great he can hardly sleep on Friday nights. And so goes his world of daily rituals and weekend field trips.
He doesn’t know what it means to be discontent. His life is simple. He will never know the entanglements of wealth of power, and he does not care what brand of clothing he wears or what kind of food he eats. His needs have always been met, and he never worries that one day they may not be.
His hands are diligent. Kevin is never so happy as when he is working. When he unloads the dishwasher or vacuums the carpet, his heart is completely in it. He does not shrink from a job when it is begun, and he does not leave a job until it is finished. But when his tasks are done, Kevin knows how to relax. He is not obsessed with his work or the work of others.
His heart is pure. He still believes everyone tells the truth, promises must be kept, and when you are wrong, you apologize instead of arguing. Free from pride and unconcerned with appearances, Kevin is not afraid to cry when he is hurt, angry or sorry. He is always transparent, always sincere. And he trusts God. Not confined by intellectual reasoning, when he comes to Christ, he comes as a child.
Kevin seems to know God – to really be friends with Him in a way that is difficult for an “educated” person to grasp. God seems like his closest companion. It is then I realize that perhaps he is not the one with the handicap. I am. My obligations, my fear, my pride, my circumstances — they all become disabilities when I do not trust them to God’s care.
Who knows if Kevin comprehends things I can never learn? After all, he has spent his whole life in that kind of innocence.
And one day, when the mysteries of heaven are opened, we will be amazed at how close God really is…. Kevin won’t be surprised at all!