Thursday, December 10, 2009
A word to new moms of kids with special needs
Today is a day to celebrate because my beautiful boy is seven years old. It's a day to celebrate because seven years ago, doctors were not sure Max would survive the bilateral stroke. It's a day to celebrate because Max continues to do so much better than those gloom-and-doom doctors thought he would. It's a day to celebrate how far I've come.
I'm feeling sentimental that Max is getting to be a big boy, but I'm not at all sad about this day, or having flashbacks to the two weeks we spent in the NICU. Yes, things still trigger memories—you've read about my sobfests, you've shared your own. But in general, time has muted the pain and devastation I experienced during the first year of Max's life.
I get e-mails now and then from moms of babies who are at risk for problems, and I can feel their agony streaming through my computer screen. I know exactly how you feel, if you are reading this. I do. And so, in honor of Max's birthday, I wanted to reach out to you.
I know that you are grieving. Why did this happen to my child? Whywhywhywhywhwy? That despair will not be there forever. It dissolves as time goes on and gets replaced by acceptance.
I know that you're desperate for answers. You want to know if things won't be so bad. You want to know what limitations your child might have. You ask the doctors. You get their e-mails and send messages. You mercilessly query moms in similar situations. You stare at other kids in the therapists' and doctors' offices and compare them to your child. You. Just. Want. To. Know. So did I. But I can tell you now that I am glad I did not have answers back then. Because if a doctor would have told me when Max was very young that he wouldn't be able to talk fluently and would have trouble using his hands, I would have been absolutely despondent. And what good would that have done Max? I needed to have hope, for both our sakes. That hope pushed me to do more for Max, and it kept my spirits up even when his progress was slow. And now? I don't think twice about Max's way of communicating or using his hands. They're part of who he is.
I know that you're worried sick. More so than you let anyone know. More so than perhaps your husband, seemingly. You lie awake in bed at night and fret. You assess your child's every move and fear you're seeing something wrong. At times, your worries veer into the irrational—you spot a handicapped adult somewhere and wonder if that's what the future holds for your child. There is nothing I can say to make the worry go away, but I know that what helped me was learning to keep my eyes on what Max was doing on any given day—not what he could be doing. The next time your mind spirals off into a freakout, look at your child and think about the good stuff he did on that day, or the day before. Also, toss the development books. Also, dress him or her up in ridiculously adorable outfits and take lots of pictures. Your child is not the least bit cuteness impaired. Savor that cuteness.
I know that you're wistful. Or maybe even jealous. Of the other kids and moms in your life, the ones who seem so happy-go-lucky and carefree. Maybe you wonder why you're the one out of all your friends who ended up with a child who has problems. Then there are the kids you see at birthday parties, The Children Who Are Developing On Schedule. For a while, I quit going to birthday bashes for friends' kids, because it was a compare-a-thon for me; sometimes, I made my husband go. I'm not saying isolate yourself. I'm saying that if it's possible to control something that's making you feel lousy, control it. And know that all those feelings are normal, and you're not a bad person for feeling them. Not in the least.
I know that you feel guilty. Did you do something wrong during your pregnancy to cause what happened? You may even feel guilty about your own despair. Back then, I'd cry and mope around the house, and then I'd feel like crap because I had a sweet little baby and wasn't he worth celebrating? The passage of time is the best anti-guilt antidote, but it also helps to keep a journal or start a blog. Writing things out gives you perspective. Ahem. So does seeing a shrink. I did. There is no shame in that. You've been through a trauma.
I know that you may not be taking care of yourself. I was so consumed by helping Max, not to mention mentally and spiritually sluggish, that some days it was all I could do to shower. Hell, I couldn't even picture ever being happy again. But, of course, I am happy again. And I've realized that if you don't take care of yourself, you can't be the best possible mom for your child. So grab some private time, and make plans do the things you enjoy (at minimum, shower and find something else to wear besides sweats). Your kid will be fine without you for a few hours. You need the me-time, more so than other moms. And boy, do you deserve it.
So, yes, I know what you're going through. I feel for you, because seven years ago, I was you. And I know that you have the power in your hands and arms and heart to help your child come along. And I know that you have hope, and there is no limit on how much hoping you can do. And I know that you have a beautiful child worth celebrating.
Just like my Max.