I catch myself thinking
of Kaitlyn all of the time while easily managing my way through what seem like
the most mundane daily tasks. I think of
her when I run up a flight of stairs because I forgot to put my wedding ring on
that day. I think of her when I climb on
a chair to dust a ceiling fan. I think
of her when I navigate my snow and ice covered driveway to check the mail. I think of her when I carry a plate of cookies
across the kitchen. I think of her when
I hold my friend’s baby and walk around the house with her in my arms. I think – how on earth will she manage to do
all of these things someday?
The time when I think of
her the most is when I’m running. Let’s
be clear - I’m not a natural runner. I
didn’t take to it easily. I’ve been
doing it for several years now, and it’s just as challenging now as when I
first began. However, every single time
that I’m on a run and I want to quit, I think of her. She would give anything to be able to run even
one mile. How dare I ever complain that “I’m
tired”, or “my legs hurt”, or “this is just too hard”. It’s nonsense. All of it.
The truth is that if I put my mind to it, there is no reason that I can’t
physically accomplish anything I want to.
Knowing that is powerful. On the other hand, no matter how much my
incredibly determined daughter tries, there are things she’ll never be able to
accomplish. Knowing that is devastating.
To quote Sally Field’s very angry character in Steel Magnolias: “I can
jog all the way to Texas and back, but my daughter can’t!” That resonates with me on the deepest
imaginable level. It is gut-wrenchingly
painful to watch her struggle. What’s even harder is knowing that there is
nothing I can do to fix it.
What’s become even more
difficult than watching her struggle is hearing her talk more and more about
what it’s like to live with cerebral palsy.
The older she gets, the more she is able to clearly articulate her
thoughts. Here are a few quotes from her
from a conversation we had tonight…
“Why do I have to be the
kid with cerebral palsy?”
“I feel like a normal
kid, but I know that I’m actually a normal kid with cerebral palsy.”
“Today at school I
actually fell under a table. I cried
because it really hurt, and then I was embarrassed.”
“I wish it was another
person at school who has cerebral palsy instead of me, but then I would feel
really bad for him or her.”
“Things that I wish I
could change but I can’t because I have cerebral palsy:
·
I wish I could dance better.
·
I wish I didn't have to go to the hospital so
much.
·
I wish I didn't fall so much.
·
I wish I didn’t have to have so many procedures
because they really hurt.”
“I think a lot about what
I’m going to be like when I grow up. I
hope that everything won’t hurt, and I hope that I won’t fall so much, but I
know I’m wrong.”
On days like this it’s
hard to know what feeling is stronger – how much I love her, or how painful it
is to see what she has to deal with every day of her life.
I have read this three times. I am fascinated at how emotionally mature and self-aware Kaitlyn is at such a young age. It is a real eye opener to hear how she is feeling. I don't even know what to say. We have not dealt with this exactly in the same way yet. It's been more subtle. For one thing, Emma is more physically challenged, so she gets little opportunity to even try many physical activities, like dance, etc. Secondly, Emma is home schooled. She doesn't have the social challenges to fit in or keep up on a daily basis that Kaitlyn has. (I am not sure that is good for Emma, but that is how it is for now.)
ReplyDeleteKaitlyn is more mature emotionally than Emma. Emma has yet to think about her future in this way...well, at least I don't think so.
Does Kaitlyn know any other children with CP? Is she mostly around kids who don't have physical challenges? I assume that is the case. It would have to be hard trying to keep up with others that do things so naturally. I can only imagine. At some point, it may help her to connect with someone else who is similar to her. I am sure you know this already. I am just thinking (aloud) that it would have to help to be able to identify with someone else who struggles too--even a teen or adult. The reason I throw this out there is because I have been trying to connect Emma with someone who is more like she is. Locally, it seems like we are the only kid we know in a wheelchair. I know that is hard on Emma. She once told me, "People ask too many questions. That it makes me feel bad."
I know this must be hard for you as her mother. Reading this even, has awakened a lot of inner challenges for me. I am not even sure what I would say if I were in your shoes right now.
I just pray that this disability thing gets easier for our children as they grow into adults--that it is easier to handle. You said it correctly, it is a lot for a third grader. What a smart, smart, girl she is though. I know that doesn't make it any easier.
Hugs,
Amy
That must be hard to hear. I am fortunate because Brendan doesn't seem to care that he is disabled. He doesn't mind being that kid in a wheelchair. He is 10 and is really okay with all of it. I am not sure if that will change one day and I often wonder if it will. I am sorry you have to deal with this stage. It must be difficult but she seems to be doing great. She will have to learn to be thankful for all that she CAN do even having Cerebral Palsy.
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