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.
You pretty much got them all. Especially the books. It took me a year to realize Lauren wasn’t going to match up to the ‘What to expect the first year’ book. And it hurt. So with Avery, I never even opened it.
I also haven’t cracked any of the books with Nathan – except for the one about babies with Down syndrome, as it was written with a much better (i.e., less clinical) perspective. However, I read through it once and haven’t opened it again.
My daughter does not have cerebral palsy, but I did find your post applicable. I agree with Beth–the books. Evil books and the BabyCenter or Gerber or whoever email updates of “Your child is now 10 months and by now she can…”. Yep, get off those email lists immediately. That and the dreams. It is okay to grieve the child you thought that you were going to have, the child that never existed. That is normal-the grief. Yet celebrate and love the child you do have. Have new dreams and high expectations. Do not sell your child short. Remember he/she is a child FIRST.
Oh, yes – BabyCenter is of the Devil. 🙂
Hi there! We are friends on twitter and I look forward to reading your blog every day. I love this advice. It is so so true. My son is 1 year old and he has Down syndrome. I had a very tough time with the diagnosis at birth but now have a new perspective on life. I see you have had the chance to get double the perspective with your two cuties.
Thanks, Gretchen. In a lot of ways, I have trouble relating to moms who struggled with their child’s Down syndrome diagnosis. I’ve already faced having one child “born sleeping” and having another child with a disability (premature birth – super scary situation), so during my pregnancy with Nathan, I was very pessimistic. I was certain that something really, really terrible was going to happen (I’m sure you won’t be surprised to learn that he was not planned :)) When he was born and we found out within just a few minutes that he would likely have Down syndrome, I was amazingly calm. Once we got the cardiology report behind us and found out he was healthy, I was “over it” (not that I’ve been super happy about it all the time, mind you). It’s interesting how my perspective became “Whew! It’s only Down syndrome!”
I have the same perspective on Julia’s CP (my husband as well, though not as strongly as me). Are we happy that she has cerebral palsy? Of course not! But it could be so much worse – she could be sitting in an urn on my nightstand next to her sister. Mind you, like Nathan aside from the CP she is healthy and happy, so perhaps if she was on the very severe end of the spectrum and we had to spend many, many days in the hospital, our outlook may be different. But, that’s where we are.
I don’t know that you would feel differently, Amy, because she would still be your child and she would still be with you – and no matter what, you would probably still be happy that she is here with you.
Wonderful, wonderful! You said so much exactly the way I would. I want to print this out and hang it in our NICU! THIS is the type of thing social workers should connect people with!
I am sad to hear that the rough years may just be beginning though. they are 10 months adjusted age and though Malachi is progressing well, Jaden is going so much faster.
I don’t think that your rough years will be the same as mine. Since you have two that are the same age in the house with you all the time, that will likely make it tougher in the beginning, but you’ll get a thick skin a lot quicker than I did. When I was home with Sarah Kate it was easy to ignore what was going on with the other kids outside my house, so the playdates and birthday parties were a little jarring. You have to deal with it everyday (bad news), but…it’ll also become an everyday thing for you (good news).
I like your comment about the friends. So true. It takes a bit for the acceptance to become your norm. Some time to realize that you have just become like Alice in Wonderland and have just stepped through to the other side. The world will NEVER look the same and that….is…a…very…good…place…to…live!! There’s no turning back and you will never want to!
Thanks for sharing. Remember those first days and who you were then versus now is interesting. I wish I would have kept a journal to look back on…I would advise new parents to do that.
Love the comparison to Alice! So true – the world never looks the same again once you’ve stepped into your alternate reality.
I love this post. I’m a mom of a beautiful 6 year old girl, Megan, born 2 1/2 months premature. She too has CP and is currently non-verbal, mainly tube-fed and has limited mobility ~ but she is amazing!
Your comments are so true. All of them. Thank you for sharing this and letting me see that others feel the same as I do. I would also add: Remember that you know your child the best ~ and don’t be afraid to stand up for your child, even if it means disagreeing with the doctors and therapists. Find the people to be part of your “team” that will allow you to add your insight and give your opinions.
I very much enjoy your blog. Thanks for sharing 🙂
Hey Andrea, You know I love reading your blog, but unfortunately haven’t taken the time to stop by lately (work gets in the way… GRRR!!!) Anyway, I am really glad that I stopped and read this post. I loved reading it and almost got teary-eyed on a couple of them. I’d love to hear more about numbers 2, 4 and 6.
Which of your dreams died when you found out SK and Nate were diagnosed? What dreams replaced the ones that were lost?
What are some of those special, magic moments that you’ve had in both SK and Nate’s childhood that are irreplaceable?
How has your inner circle changed? Have you gained a better understanding of disabilities from your new-found friends in this circle?
I was thinking you could expand on this post, and do sort of a Part B, on my blog if you’re interested? I want you to know I am very proud of you and admire you so much. SK and Nathan are two amazing kids and I’m lucky you’ve let me enjoy their journey.
God bless you Andrea, Jason
Jason, I would love to do a piece like that – will take some time and a bit of thought to put it together. Give me a few weeks and I’ll get on it!
Wonderful! Thank you. 🙂