Max at ten months doing his best Buddha imitation.
Recently, I got an e-mail from Jennifer over at The Pregnancy According To Jude. She said the blog and Max were inspiring to her, which I was grateful for, and she told me all the heartbreaking stuff she'd been hearing about her baby (like Max, he had a bilateral stroke). Things like Jude might not walk, Jude might not talk. Dave and I were told the same about Max. I got another e-mail from Whitney, mom to little Suze Beth Booze who had encephalitis and resulting seizures. Whitney's also been told the worst by doctors about her little girl.
I know just how they're feeling. You hear so many horrible things from doctors that you're not left with a whole lot of hope. You feel anxious about your child's future every waking moment, and all the while you're struggling to accept that the baby you expected to be like every other baby isn't. I've said it before to other moms, those first two years are the toughest. I wish I'd known back then some of the stuff I know now. And so, Jennifer, Whitney and all the other wonderful moms I have met through this blog, this post is for you. These are the things I only realized in hindsight. I hope they help you, in some way.
• Put away the What To Expect book you may have bought, cancel the "Your Baby This Month" e-mails from Babycenter. Constantly comparing your child to typically-developing kids will only make you despair. Your child will develop at his own pace. As long as he keeps improving, that is the key thing.
• Don't attempt to diagnose your child yourself. Seizures were my biggest fear after Max got out of the hospital. I'd read up obsessively on them, and then convince myself that Max was having one kind or other. Max's neurologist finally set me straight.
• You need to have at least one doctor, ideally more, for your child who besides being wise is also a kind, rational, reasonably optimistic human being. And who also understands what you're going through. Try with all your might to find this doctor.
• If you need therapy, get it. I did. If you need to cry, do it. I did. In the car when I drove Max to therapy appointments, in the shower, as I lay in bed at night. You've been through a trauma. You have to get the grief out of your system.
• Accept help. I am a pretty independent person who likes to do things myself. But after Max was born, and I was feeling overwhelmed by all the doctor and therapy appointments while adjusting to having a baby, I let my sister do the housework. I let my friends look up information for me. I let Dave spoon-feed me dinner as I breastfed Max. They got me through that first year.
• Try hard, try so very hard, to enjoy your child. Look at how delicious Max was. I knew it, but I didn't enjoy him as thoroughly as I could have because I was so consumed with fear about what he would "be" like. All of you have beautiful children. Stop peering so hard into their future, and enjoy them in the here and now.
xo
