When Bubby was in the NICU, we were often told, "The NICU is a roller coaster ride." And it is true. There's nothing good about leaving your baby in the hospital for several weeks instead of taking him home. Nothing prepares you for seeing your preemie crying because the doctors have had to stop feeds as a precaution to something that may or may not be wrong. It is heart-wrenching to see wires and tubes and machines hooked up to your little one - and I know that many other families have had to deal with an even harder medical journey.
I think of the roller coaster ride analogy because it fits life for us right now, especially with Bugaboo. We have good days and bad days and days where we feel completely out of control. He is making huge gains in his speech. Longer phrases, less drooling, able to focus and follow directions better. All of these things are amazing.
But there are still days - weeks - when it feels like we are on a wild ride in so many aspects of our journey with him. The meltdowns are back (not that they ever completely left) - but it's not every day, though often it is several days in a row. There is crying and yelling and him not being able to communicate what is bothering him. We try to guess. We try to redirect. We try to re-enforce that it is okay to cry but it is not okay to scream at people. It is heart-breaking to have to watch/hear him on his bed just crying endlessly.
He has improved in potty training - especially with "number two" - ever since we pulled him from preschool. In three weeks we have only had three accidents where that is concerned. The other aspect of potty training seems more complicated - some days he stays dry most of the day, and other days it is completely doesn't happen. He has started being fearful of the exercise ball and the swings we use for therapy and any kind of swinging motion that we are supposed to be doing to help him. We don't know why this fear has started or how to help him overcome it. He has had nights of waking up for hours in the middle of the night. This is exhausting for mommy and child.
I watch him with his peers - at church, with friends of our family - he likes being around them, but he doesn't engage them, he doesn't interact with them really. He happily plays the beanbag game during Cubbies thanks to the game-leaders modifying it a bit for him, and I help him "run" around the cones of the circle. We work all week on his verses and he knows them - one of the perks of his echolalia - but then on Wednesday night he refuses to say them for anyone to earn his stickers. I know the point of memorizing the Bible isn't for stickers, but it is incredibly disheartening for me to see him not do what I know he can do.
I see Bubby when we are around other families with kids of similar ages. I see him play with other kids' younger brothers and sisters, and I wonder especially in these settings how it affects him to have a little brother with special needs. I see his compassion and patience at home and in public with others, but I also see his sadness and frustration when Bug is screaming all afternoon and he can't have a decent conversation with his own mother.
There is no handbook for this kind of life. And even if there was, I probably would read it and become frustrated with it.
Tonight during the teeth-brushing/pajama time routine, Bubby asked, "Why did God give Bug C.P.? Does He like that some people can't use their hands?" I fumbled through an answer about how I don't know why God gave his brother disabilities, that God loves everyone, whether they can use their hands or not, and that God is good and has a plan.
I believe this. I believe God is good and has a plan. I don't know what that plan is. I know that a lot of times His plans involve pain - not because He is sadistic but because there is a bigger picture. I trust the plan because I trust my God. Even when I am lying next to my youngest, putting my hand on his back, trying to comfort and calm him and all I can do is pray I trust Him. Even when all I can do sometimes is text a friend and say, Please pray, I still trust Him. I trust Him because He can handle my questions, my fears, my doubts. I trust Him because to not trust Him feels a whole lot scarier.
I trust this God who has given me a child with disabilities because I know the stories of the man who was born blind so "that the works of God might be displayed in him." (John 9:3) I know the story of Lazarus - and how Jesus stayed away two extra days even though His friend was sick, and then Lazarus died. And Jesus wept. And then He asked His friends, the sisters, if they believed. (John 11)
I know every day is a chance for me to believe, a chance to trust, a chance for me to ask for prayer or ask for help or celebrate a new milestone or pray for someone else or rest in the beautiful simplicity of time just to be with my little family. I know that I can have hope that none of these days, none of these experiences, will be wasted.