I took off work early to take Elena to test out a new bike (more on that later). I insisted that we needed to be able to try it out in the store, or behind the store--b/c we had concerns (related to E's CP) that the bike might not be a good fit.
On the way to the store--in the f'ing car--E asks me, sincerely,
"Will I always have cerebral palsy?"
My eyes get REAL BIG.
"Is this something you want to talk about right now?"
"YES."
"I'd rather talk about this next to you, not in the front seat."
I'm thinking, please please please NOT NOW. Let me look at you and give you that look that I love you and things will be fine. But she kept on pressuring me. Look--I don't lie to Elena. When she asks if shots/surgery hurts, I say yes. Better to be honest so she believes me when the time is truly important.
I sighed. "Well Elena...the answer is yes. But you are learning more every day--"
"WHY CAN'T IT BE SOMETHING I HAVE FOR A LITTLE WHILE AND THEN GET BETTER?! WHY DO I HAVE TO HAVE IT ALL THE TIME?"
She is WAILING, Sobbing! I can barely drive the car. I'm thinking, I need to PULL OVER RIGHT NOW and help her get it together. But I don't know what to say. She is carrying on, I can't even understand her words, but she is seriously upset about this-and I'm pretty sure she doesn't quite understand the whole situation. I'm holding back tears, feeling like I'm unraveling, and thinking I have GOT TO PULL IT TOGETHER.
I get to a parking spot by the bike shop. E has calmed down some. It's super hot outside. I get her out of the seat, and hold her in the driver's seat with me.
"Elena, are you alright?"
"Yeah. It's hard sometimes."
My heart hurts. How do I do this???
"I will help you do whatever it is you want to do. This is just one little part of you, and I love the whole you--everyone does. I'm sorry if I upset you."
"It is upsetting--" she is talking so low and weak now, talking into my shirt.
"I'm sorry I upset you. I never want to make you sad," as I hug her tightly and hold her hair, "But I can't change this." GULP. BREATHE. "I can help you, and you learn new things every day. I love you always, in all ways. You do know that, right?"
"I know," as she buries her face in my chest. We stay there for a few seconds.
"How about that bike?" I ask.
"Well, I better wipe off this wet face then."
We both laugh. And pick up the pieces of ourselves, while shedding off a little of that everything-will-be-okay facade, that I think both of us harbor a little bit each day. Even though the weight is excruciating, and the reality of her disability "awakening" very raw--and real--now, I'd rather chip at her veil of normalcy than have it slapped in her face later. This year is going to be difficult sometimes. I just hope I say the right things.
Thursday, June 30, 2011
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9 comments:
Oh wow! I am crying. I have not really had this conversation with Emma yet. So, this really got me. I think you handles this beautifully, and I am amazed at how quickly Elena bounced back. Hugs!
Amy,
I feel Elena's pain. I felt that a lot when I was her age, mostly it was based on frustration, and wanting to be more "free" to move. It's hard, but I think what you said was just fine. As long as the message is love, support, and acceptance, the specific words you use are less important.
Elena works SO very hard, everyday, and that will have huge benefits for her in the long run, but I also think she will need an opportunity, as she gets older, to find her niche, and have something excels in without a lot of effort. For me, that was writing a "novel" in middle school. It helped me focus less on what I was unable to do, and therefore, be a lot less affected by any CP-related grief.
That isn't to say that her body best be completely overlooked as a part of her self-image. My biggest wish for Elena, and other young girls with disabilities (and I do mean especially girls) is that they grow up feeling that their bodies are inherently strong, good, and beautiful, rather than "bad", "uncooperative", "limiting" etc. etc. She struggles in some ways, and she is different, and that's okay. I was told those things more as a kid. My dating life would be dramatically better ;) I jest..sort of
P.S. You're a rock star mom. I know you're up for this challenge.
That should say "I wish I was" hahaha
HI AMY
OH, THAT BEINGS BACK A LOT OF MEMORIES FOR ME.. I REMEMBER BEING IN GRADE 1 AND BEING TOTALLY FUSTRATED THAT I WAS NOT ABLE TO DO WHAT THE OTHER KIDS WERE DOING, OR BEING ABLE TO KEEP UP WITH THEM.. HECK AS AN ADULT I STILL HAVE THAT PROBLEM..
I HAVE TO SAY IT WAS NOT HANDLED NEARLY AS WELL AS YOU DID.. I WAS JUST TOLD THAT WAS THE WAY IT WAS AND THAT I HAD TO DO THE BEST I COULD AND BE HAPPY WITH IT...
MELISSA
P.S HOPEFULLY SHE WILL HAVE SOME OF THE SAME FRIENDS IN GRADE 1 THAT KNOW HER SO THAT WILL MAKE THINGS EASIER FOR HER..
This is probably not what you want to hear, but I am 27 and still have days (not often, but some) when I sob and think things like this. Some days the unfairness of it all is just overwhelming.
I think that what I want to hear most when I feel this way is that I'm justified in feeling the way that I do, that sometimes things are hard, and I have to deal with a lot that other people don't, and that it's okay to feel sad and overwhelmed sometimes.
I tend to push myself into a mindset of having a stiff upper lip and being grateful for what I have and how much I can do, etc, etc. Sometimes we all just need to hear that it's okay to feel whatever we're feeling. And honestly, sometimes CP and everything that comes with it just sucks.
I think it's great that you and E can have these conversations. What you say is probably less important than that you're there to listen.
I fear this conversation every day as my son gets older. He is four and is starting to realize that his walking and movements aren't quite the same as other kids his age. I just hope I can hold it together when having the conversation b/c I broke down when reading your post. You are a true inspiration.
Yes, encouragement is what it take yes you have this but you can overcome it. I was born with CP in 1948, when it was a closed door subject. I was suppost to be institutionalized at age 5 but my Mother said NO. She instilled in me to want to learn and achieve things if it was in my ability. I had tutors and helpers all through school and teachers went to the principals office. I am a dressmaker, crafts person of many kinds, baker, cook, designer, painter, rollerblader, Black Diamond dh skier, drive cars, truck, tractors and just want to be treated like a real NORMAL human being. I was teased and picked on all thru school but forgave my classmates at our 20th class reunion as I didn't know the name to what I had until I was 30.I am married now left home at age 54 married at 56..as Cinderella got her wish...Life is what you make it. Determination and guts it what you also need...yes somedays I can't walk but it goes away and I am like a puppet and keep on going as God is my strength and my best friend. Only thing that was never fixed was my voice...but I love to sing when given the chance. learn everything you can as it will be with you forever...ballet or tap to build those muscels plus it makes you strong. I even took up ice skating against my Mother's wishes at 21..go for it girl.Judymae 62 y.o. I have deg. arthritis but it does not get me down but for a week or so.
I cannot improve on or add anything to what has already been said. I agree with everyone that you handled the event lovingly and as best as possible. I believe we cannot protect our children from every painful event/experience/thought. And that is normal and best as there is growth from pain.
Barbara
Wow. What a heart wrenching post. Carsyn is 14months and we are just beginning this journey. It has been difficult and sure it always will be. Thanks for sharing. You are amazing and doing a great job.
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