Tuesday, May 10, 2011

The Talk

Last week we went to Shriner's in Erie. Let me first say that if you have never been to Shriner's or knew of anyone who went or has been associated with this fantastic place, it is worth the effort to become connected. Shriner's Erie is the most wonderful place we have been thus far. We went for their CP clinic (though Evelyn doesn't have CP... close enough, right?). It was a great experience. There were probably ten different people in the room assessing, asking questions, and creating a plan for optimum care of Ev. This is SUCH a far cry from any other experience of compartmentalized health care we have been subject to in the past. One of the things we came away with, though, was "the talk."
"The Talk" was one I have been dreading for some time now.... and it had nothing to do with the birds and the bees..... it was about adaptive equipment/wheelchair for Evelyn. They say "Its time...."

And every orifice in my body was doing a primal scream NNNNNNNOOOOOOOOOOOOOOOOOOO.

Let me explain.....

I know the reason behind this.... and I DO want the best for my child..... I know that for the sake of keeping a straight spine..... and using her hands to their optimum ability.... and easier mobility.... and that just because we are getting a wheelchair, does not mean that she will never walk..... but the limits and stigmas that come with this decision are heart wrenching. She is already different..... and its just one more piece of normalcy that we have lost....

I know, I know, I disasterize...... I say things like:
But how will I do a wheelchair in my car? I like my car!
How will we go for walks out in the field near our house? Or off road on our back forty?
What will other children think of her? How will she play with them?
How will we modify our dinky 1860's brick farmhouse to accommodate one more piece of equipment?

I shouldn't feel like this. I love her and don't want to be selfish over silly things..... but I DID NOT WANT THIS FOR HER..... :( I don't want people to treat her differently.... or to pity her..... or to have her options of mobility limited so severely....

Stuck in a funk today....

Tomorrow will be better....

I guess I just wasn't ready for "The Talk"

1 comment:

  1. HI
    My name is Jenna and I came across your site. Evelyn is an amazing, courageous, strong and determined fighter. She is a brave warrior, smilen champ, and an inspirational hero. I was born with a rare life threatening bone disease, and i love it when people sign my guestbook. www.miraclechamp.webs.com