I have to be honest my friends…yesterday was a rough day for this mom. Many of you have been on our journey with the twins from the beginning and some of you are new and don’t know all that we’ve been through with them and wonder what could possibly be wrong with either of these two…
but yesterday we were given a diagnosis for our little Maddie – the smiling little sweetie on the left there – of Spastic Diplegia otherwise known as a mild form of Cerebral Palsy.
It wasn’t a huge surprise, but no less sad. She’s always struggled with her motor development. She belly crawled for so long and didn’t walk until she was beyond two years old. Those little sea legs there…they’ve only got a solid 8 months of experience on them and she’ll be three in a couple of short months.
Needless to say, trying to focus on this week’s Listable Life topics of outfits I love or reasons I’m way cooler now than my younger self (which I totally am…so I’ll have to save that topic for later) just wasn’t inspiring me to write.
What I love about Listable Life though is the ability to take the topics we plan or simply write on what moves you at the time – which is what I’m doing now.
Yesterday was a bit of an emotional roller coaster after we found out and so many thoughts ran through the minds of our entire family – so I thought it fitting to share what one goes through when their child is diagnosed with a disability such as Cerebral Palsy. And while this is my experience and not the same as anyone else’s, I’m betting there are those who can relate or will find comfort in knowing they aren’t alone in their emotions with something like this. So here goes:
When Your Child is Diagnosed with Cerebral Palsy
- Your heart will sink and while you pretty much knew deep down this was the answer you would receive, it doesn’t make hearing it any less difficult.
- You realize that while you “knew” , you still held out hope that all the physical struggles she was experiencing, like the immense amount of effort it took for her to come down steps or the markedly different gait she exhibited compared to her identical twin sister, would magically disappear and she would all of the sudden walk just like everyone else.
- Your older child will show genuine concern about how your little girl will manage the kids who will make fun of her, because at 7 years old, she’s already aware that there will be kids who will zero in on her little sister’s obvious differences.
- You will find yourself consistently ebbing and flowing in your ability to stay focused on the positive. You will worry about her future while the next minute resolving to not let this diagnosis define her.
- You will be thankful she isn’t worse off because some children with CP live their lives with far more difficulty than your child will.
- You will find comfort when the doctor tells you that her version of Cerebral Palsy is only a physical disability and that while many children with this condition have additional issues due to the brain damage they endured at birth – CP in and of itself is only physical and according to evaluations – your daughter is on track cognitively.
- You will still worry there is something else looming…
- You will have silly thoughts like will she be able to wear heels one day? And then remark to yourself quietly that she may in fact think heels are overrated.
- You will find messages like this in your inbox from really lovely friends:
…but here is what I do know. Maddie has one fantastic Momma behind her, to support her and cheer her on, and to catch her when she falls. Her Mom will be there for the rest of her life…. because she knows what it’s like to have to go it alone. Her Momma has strapped herself into that roller coaster ride too, and is hanging on as tightly as she can- because that’s the kind of Momma she is.
And it’s words like these that will give you the resolve to pick yourself up, dust yourself off and move forward so you can empower your kid to be the best version of themselves.
As I sit here, 24 hours from the time when we first heard the diagnosis of Cerebral Palsy, I am working my way to coming to terms with what it means for my little girl’s future. I am focusing on the fact that she is, for the most part, doing extremely well and that it’s my job to empower her and give her the strength to believe she can accomplish any goal she sets for herself and provide her with an understanding that she’s never alone in her journey. Because that’s what mother’s do and she deserves nothing but the best that life has to offer.
Listable Life is a weekly meme shared by myself and Sharon over at Mom of 6 . Each week we all write to one of two prompts that are “list” in nature and then link up. We then hop around, read and comment on one another’s blogs in an effort to find new faces and places to read in the blogosphere. Head HERE to find our upcoming topics! Make sure to add the button below to your post so it’s easy to see which post belongs to the linkup and in an effort to encourage others join in!