In talking with other moms of very young children with cerebral palsy, I’ve found that we share many common emotions and concerns. I recently met a local mom whose baby was recently diagnosed. I don’t want to reveal any details about her on a public blog, but speaking with her did get me to thinking – a lot – about how different I am now from back in 2003, when I first learned that Sarah Kate had cerebral palsy. If I could go back and advise my 33-year-old self, here are six things I’d say:
1. Hang in there; it gets better.
The absolute worst years will be from around age 10 months up to age 4. During those years, development in typical children takes place so rapidly – it’ll be tough to see your child fall so far behind so quickly. Add to that the fact that medical professionals have very little insight into what your child’s future will look like, and those early years will stretch out before you like a bottomless pit of frustration and sorrow. After a few years, though, your child will continue to improve, while her peers will mostly just get bigger. She won’t ever catch up, but the chasm will stabilize. And when that day comes, you’ll be able to breathe again.
2. Allow your dreams to die and be replaced by new ones.
When you were pregnant, you dreamed of the day when your child would reach significant milestones, like walking. In your dream, those first steps were taken at home, somewhere in the vicinity of the first birthday, and there were smiles all around. Instead, first steps will be in a physical therapy office amid wailing and promises of stickers. It’ll be a really big deal when it happens, though – and the other hard-won milestones will all be really big deals, too.
3. Ditch the books.
Before the diagnosis came, you had books on baby and toddler development. They’re worthless now, so throw them out or give them away. After the diagnosis, you acquired literature on cerebral palsy and preemies, but it’s written in clinical-speak and enumerates all of the ways in which your child won’t be typical. In addition to being depressing, none take into account that your child is a special individual with a unique personality. Research as needed, ask questions of professionals, make friends in the cerebral palsy community, but don’t read the books.
4. Be prepared for your inner circle to change.
It’s sad to say, but some people are just uncomfortable with disabilities. Some of your pre-baby friends will be nice to you, but will look through your child, not at her, or assume that they don’t have anything in common with you anymore, and drift away. That’s the bad news. The good news is that you’ll become closer to other people who will replace those friends in your heart. Becoming the parent of a child (or two) with disabilities will help you more clearly see who you want to spend time with, and it’ll be their children who will be your child’s friends. Those children will grow up appreciating disabilities and know what cerebral palsy is.
5. Let her be who she is.
No matter how much therapy your child does, It Will Never Be Enough. Don’t beat yourself up if you decide “we just can’t do it today.” I’m not telling you not to push your child – you should – but life can’t be all about therapy, and you need to accept her imperfect body and make sure that she accepts it, as well.
6. Don’t miss out on the magic moments of childhood.
The first few years of a child’s life can never be relived. Take time to do the fun things, even if you have to adapt them for your child’s limitations. She won’t remember a lot of what happened in those early years, but you will. Enjoy her while she’s still small.