Every week, I get emails from new moms who read this blog. They often say they're heartened to see how well Max is doing, which is heartening to me. But they're anxious about their babies. They write about struggling to come to terms with what happened, how isolated they feel from friends and family (and even their husbands), how overwhelmed they are. They want information on what they can do to help their babies. They want comfort.
Yesterday I heard from Jewel, a mom of three. Her youngest, Jemma, is 13 weeks old; she had a brain bleed in utero. Jemma has some weakness in her right arm and hand and isn't lifting her head up yet on her tummy. She's on seizure medication. "She now smiles and coos and loves to interact with people and be talked to. You can tell she wants to laugh," wrote her mom. "Any advice with what to do with Jemma, watch for, bring up to doctors/neurologists, tests to ask for and how to better interact with her, I'd love. It's taken me 13 weeks to reach out and look for people/information. I realize it's much better to relate and talk with people who have experienced the same things than to try to conquer/live it alone."
I shared some thoughts with her, and then I said I'd reach out to all of you to see what you wanted to say. Some of the stuff I think is key during that first year (and afterward) when you're a new mom to a child with special needs:
• Get your baby lots of therapy (aka therapy up the wazoo). We had Early Intervention come and do an assessment on Max a couple of weeks after he was home for the NICU, and before that kicked in I was taking him to private therapy. Doctors couldn't tell us what Max's future held, but they were unanimous on one thing: getting babies therapy during the early years of their life, prime time for development, is key.
• Get yourself help. Take up friend's and family's offers to babysit or do things around the house. If you can swing it, hire a sitter once a week or more. You've been through a trauma; you need time to process, heal and get your favorite kind of frozen yogurt, if that's what makes you feel good.
• Find ways to enjoy your child and block out the worries. I've written before about dressing Max up in super-cute outfits and doing photo shoots with him. Going to the mall where ladies in stores would coo over Max helped, too. It focused me on his baby deliciousness and distracted me from the medical hell.
• Don't O.D. on doctor visits. When Max was an infant I made the mistake of making appointments with doctor after doctor, searching for answers about what the future held for him. Nobody could say for sure. Then I met a doctor who did give me his opinion. He said Max's future looked "ominous." I cried hysterically. After that, I mainly stuck with our kind, encouraging, realistic yet optimistic pediatric neurologist. He gave me hope. That's what I needed most in that first year with Max.
What information and/or words of encouragement do you have for this mom? I know she'll appreciate hearing from you.