April 29, 2011
There are certain daily activities that many of us take for granted - not even just the big stuff like walking and using the toilet, but even things like self-feeding with utensils. I am guilty of it. I forget how thankful I should be that I can do these things on my own, but sometimes, I'm reminded. I have been trying to work with Jordan a little more to self-feed with utensils. Between her head control and motor functions, it's hard work and she doesn't always have a lot of success. It's frustrating for me, and I know it's at least twice as frustrating for her. But this morning, as we sat together and I fed her pancakes, my eyes were once again opened. She leaned over her chair and noticed the food on the ground from last night's dinner. To which she said, "Mommy, that floor is dirty. Sorry about that." I love that her heart tells her to apologize, but hate that not only does she have to worry about intentionally harming or inconveniencing others, but more than most kids, she worries about what she does unintentionally. I told her that I would clean the floors while she is at school and she thanked me. I clean them nearly every day at the same time - because somehow, those dirty floors are a reminder that none of us really want.
April 22, 2011
We have been experiencing so much change lately. Changes that we've prepared for the best we can, but changes that I have felt so unprepared to make. As Jordan's mom, I have tried to shelter her. When her therapists with her old program said that wanted her to go to a preschool through the school district with "typical" kids, it took some convincing for me to understand why. Part of me wanted to protect her by keeping her in that safe environment where everyone is different so everyone is normal, but that part of me lost out to the part of me that can be reasoned with and wants what is best for Jordan, at any cost. And the recent expense has been a little costly on my mental state.
I mentioned the Family Activity Day on the main page of the blog. All in all, it was a good day. But it was also a day of reality. I don't typically see Jordan with other kids. To me, Jordan is "typical" because she's all that I know. It isn't until I'm forced into a situation like Family Activity Day that I really understand how different her life is; how much harder she has to work; how much pain she must feel knowing that she has limitations that other kids don't have. So many people - parents and kids alike - take what they have for granted. They don't appreciate that they can run freely around the gym, so the kids throw tantrums on the ground and the parents roll their eyes at the silly activities that they've been asked to join in.
Jordan is not like that. She doesn't take things for granted, because she knows how hard she works for the freedom that she has. I had so much pride as we ran around the gym together - she in her gait trainer, and me softly guiding it with the handle bars behind her. But sometimes that pride made me want to trip a person or two. It is amazing how you can look at people and immediately gage their comfort level with "different". For instance, the one grandmother commented repeatedly about how cute Jordan's gait trainer is and how amazing her hair is and how nice she is and so on and so forth - I will refer to her type as the "complimenters". Complimenters don't know what to say, but they're nice people. They are uncomfortable with "different", but they want to appear as non-judging so they compliment anything and everything. She wasn't the only one, but I had the uncomfortable luck to spend a good period of time beside her. Then there are the "snubbers". Snubbers are also uncomfortable, so they limit their interaction to a smile, maybe a nod, and then a quick head turn or brisk move across the room. I can't say I blame them - different is... well... different. And finally, we have the "relaters". They all know someone who uses or used a walker of some sort, and most of them wish that person could meet Jordan.
So why does this come up a week later? It's been on my mind. I left that day sweaty and a little concerned, questioning if it was the right place for Jordan to spend her mornings. But since then, I have had the opportunity to be the one who takes Jordan to school and picks her up every day. And I have realized that kids are so much cooler than their parents. I'm no different; Jordan and Karter are far cooler than I am, for sure! Anyway, these kids see different. They sometimes even acknowledge their differences. But they aren't scared of their differences.
So why did I feel the need to bring up the classification system? Mostly just because I find it interesting. I'm in all of these groups. Yes, it's true. I'm a "special" mom who doesn't always deal with "different" with extreme grace. I am challenging myself to be more like a child when I encounter "different". If you find yourself in one of these groups when you see someone "different", maybe you could join me in this new endeavor to achieve greater understanding.
My blog was originally created to share updates and pictures of the girls with ease. My husband and I have big families, and no one is local, so the blog gives me an easy way to make sure that anyone who wants to be in the "know" is, without feeling like we have to give the same update a dozen or more times. That purpose guides the blog, and I do my best to keep the blog as a positive place. Truth be told, my daughter's cerebral palsy battle isn't always giggles and laughter and the positive spin often takes 3 or 4 tries to get right on the main page of the blog. Well, we all have bad days. A bad day at my house may include another fall ending in the ER, or a less than favorable report from one of the many doctor appointments, or a choking so severe that it turns into vomitting, or a million other things.
ABOUT THE CONFESSIONAL
I now welcome you to my confessional. It is here where I will share with you that I spent yesterday evening reading the blogs of adults who have lived every day with cerebral palsy and the mom's of children with cerebral palsy, feeling their pain and celebrating their victories. It is here where I will share my hatred for the Facebook post "
