This past week, a couple that I know and like asked me a question about parenting a special-needs child. They are expecting their third child–so they are already great parents–but because of some disturbing medical news they got, they are wrestling a little with the possibility that their baby may arrive with special needs. I don’t want to go on about their situation because I don’t know where they are in the process (well, any of the processes, I guess) and even though they shared a bit of their situation with me, theirs is a private struggle.
They asked me about my daughter, Mia–specifically, how we handled the news when we discovered she would be special. I am pasting some of my rather long reply here because in the process of trying to figure out what I would do in their situation, armed with the knowledge of what it is like to have a special child, I stumbled onto something that I cannot fully articulate, but that I think it somehow fundamental…something about how God redeems “misfortune.” I am not solving the problem of evil, here, but I feel like there may be some truth near what I was thinking, and that’s always wild.
Mia’s story: we didn’t know that she was going to have CP before she was born. Her CP is actually the result of her brain bleeding because she was born three months early. The bleeds were aggressive, so she had hydrocephalus, and she had to have a shunt placed in her brain to relieve pressure. Any brain damage that occurs, before or during birth, is diagnosed as CP. We didn’t have to ask ourselves, seriously, what we would do if she was special. She arrived before we had even attended our second “how to give birth” class, and it was game-on from there.
However, we did have three months of her being in the hospital, having surgeries, progressing and then suffering setbacks, in which we got to experience some of what you are struggling with. We had all sorts of counsel from her doctors about the possibility that she would be severely damaged (as in “scary CP,” needing help breathing and swallowing, etc.) but basically they just tried to prepare us for the worst because no one could tell us how she would be. Even today, there is the chance that she will effectively stop learning at some point due to decreased gray matter in her brain. No one could or would say anything definitive for fear that we might sue when their predictions fell short of the mark–and their predictions will fall short, you know? Doctors can hypothesize, at best, because they just can’t know how a child will grow and compensate, or what their gifts and limitations will be.
When you have a child who has special needs (the truth is that EVERY child has special needs, seriously, but we are speaking of developmental delays, etc.) the best advice I would offer is to throw out all the timetables that parents are encouraged to compare their children to. The truth is that children are just not meant to be compared to numbers, especially when they are different than we call normal.
People will tell you guys that you have a decision to make, and that is true. They will tell you that what you decide will effect the whole family, and it will. Let me tell you this: I wouldn’t take Mia’s condition away (though there have been days I wished she was “normal”) even if I could. She is who she is with CP, and I love that little girl through and through! In fact, I am who I am because of how she is, and I am so immensely blessed with her. Example: because she is special, I get to see the best in her friends and in her teachers as they reach out to love her. She has brought out beauty in the people who love her, but who don’t have to, from the very beginning of her life.
I imagine that God maybe selects the families who need the children they get. Your younger child is yours both because he needs you, with your brain and heart, and because you need him. Your older child, too–maybe they teach us to not forget to be joyful. Your baby’s stats are scary, and Down Syndrome is a burden I can’t imagine. We all hope and pray for perfect babies, but she will be perfectly herself, and she will teach you how to love in a way that you can’t know, today. That’s true even if she arrives healthy and normal, but it is fiercely true if she does come to your world with additional needs.
I am sorry to write and write, maybe not even addressing your question, but I needed to tell you that you can’t lose, you know? When we lost our son, it was a terrible tragedy, but I felt (and feel) blessed to have known him. Mia’s condition inconveniences me sometimes, but it blesses me so much more and teaches me every day how to be a better person than I really am.
The rest was just personal–I wanted to give words of support. The thing that is staying with me is the realization that Mia’s condition, and by extension EVERYONE’S flaws and tendencies (our special needs!), is a blessing and part of what makes her my particular, perfect-for-me daughter! I mean, culturally, everyone would tell you that you want a “normal” child, but that’s just a lie, anyway. None of us is normal, and it really is our peccadilloes that make us beautiful, so long as we really look at one another with our hearts.
That still doesn’t make a tragedy like Haiti any easier to observe. Still, I can’t help but think that maybe God looks at or differences and flaws more like this than with disgust.