It wasn't until I heard other people say that my son was a boy with "special needs," that I even considered this idea.
I thought of Asher's situation as something that happened, and then was "fixed." Maybe I even thought that his shunt surgery saved him from having special needs at all. Because it did, for the most part. His hydrocephalus was caught at exactly the right time to prevent brain damage that would have effected his daily life more drastically.
I wasn't offended, hearing people describe Asher as a child with special needs, that's not what I'm saying. I don't think that's offensive, since at some level, we all have special needs. Actually, it's a little silly, but I was simply surprised, thinking "Oh yeah, I suppose he does have special needs."
Then recently, from an adult with hydrocephalus, I learned that "having hydrocephalus is like having a hang-over every day."
Asher's most important need is for me to connect with him, becoming more and more aware of what he needs on a daily basis. To watch for signs that he's hurting and help ease the pain. To remove him from situations that are just loud enough that he covers his ears and cries. To make sure he gets enough rest. To take him to the doctor any time there's a question, even the slightest chance that something might be wrong.
It's funny how quickly something "special" becomes your "normal" when you love someone just as they are.
I had the honor of sitting with MckMama and Stellan a couple of weeks ago. It was an experience that has been heavy on my mind, thinking of Stellan's little heart and the heart of his loving Mama. I sat there, hearing the beeps, watching the heart monitor, seeing the face of this sleeping miracle baby. I was struck by the miraculous peace on both of their faces despite the daily struggle and road ahead. It's not that pain and fear were absent, it's that this baby and his family are covered by their faith, the belief that Stellan will live, and the thoughts and prayers of hundreds of thousands of loving people.
If I didn't believe in God before, this experience would have had me questioning my disbelief. Because the spirit of that hospital room was thick with comfort and peace. Even there. Even then. In the midst of a terrifying battle for life. Even then. I felt like I could reach out and scoop up that faith, put it in my pocket, and then pull it out when I have a special need.
Because that's what faith is about. It's believing that there's Someone out there that watches us closely, trying hard to connect, and is aware of us on a daily basis. A Father who watches for our hurting and does all He can to ease the pain. One that loves us just as we are.
MckMama and I ended up talking for quite some time about all kinds of things. And this lovely lady, one mothering her sick baby boy so beautifully, took the time to ask me all about Asher. In detail. She wanted to know all about hydrocephalus, how the brain shunt works, where it drains, will he always have it, etc. Then she said something that struck me in a new way. She talked about how we have these medical options, things doctors can do to "fix" our children, and talking about it becomes so normal. But every once and awhile, we have to stop and say, "But it's his brain!...or, it's his heart!" She's right, it's mind blowing, really.
I don't think I can describe how thankful I am for our new normal. Asher had a need that was so special, it required brain surgery, a valve and tubing placed inside his little body...and it's all second nature to his surgeon. Amazing. A miracle.
And now I've been praying for the details of Stellan's much more precarious case. I've been believing that each new approach to saving him is being attempted at just the right time. Because even when it makes no sense to us, I believe things are falling together in the most miraculous possible way. No matter what happens, that's true.
Please send your thoughts and prayers to Stellan in Boston. The current plan is for surgery tomorrow. And that sweet Mama, who took the time to ask about Asher in the midst of her own struggle, needs our prayers for peace too. She has a special need.
(To read more about Stellan and his family, visit My Charming Kids.)