Monday, May 13, 2013

A Fighter

Today's gift is a fighter. in never gives up.

Watching my daughter daily truly is inspiring.  Watching what she has to overcome every single day is heart wrenching to watch, but also rewarding at the same time.  She simply amazes me.

Here I am going to think about being in her should too.

First and foremost I honestly can not imagine not being able to talk.  And since I am Italian, how about not being able to talk AND not being able to use my hands. 

But it is more than just speech.

How about having to have someone wash me, dress me, feed me.  Take care of all my activities of daily living....for example helping me in the bathroom.  I have little privacy.  

Then there is watching me to make sure I do not lose my balance and fall, which could produce a fracture.  I can not walk up or down stairs...and walking on stairs is getting harder and harder for me.  It scares me and the person helping me.  I am relying on them more and more.  I hardly have any time to myself.

My walking has become inconsistent and I don't know why.  My legs shake...all the time.  Like a tremor.  I don't like it.  My mom can see it in my eyes, but she tries the best she can to understand.  I know that.

I try to communicate the best I can through my words, my iPad or through gestures....but sometimes they just don't get it.  And it is very frustrating.  So I get mad.  I can't help it.  

I know my parents and my family and my "Anne Sullivan" want what is best for me.  I can tell by how they never give up on me.  I know it must be hard for them to watch me when my body starts to do new things, which make my life more difficult.  Trust is hard for me too.  I have a high pain tolerance, but sometimes it does hurt...but it is hard for me to communicate this feeling.  Hard for me to adjust.

But I do.  I fight through it all because I will not give up on them as they promised not to give up on me.

My daughter has a lot to overcome daily and she fights with all her heart.  Whether it is easy or a challenge she gives it her all.  She knows we do everything we do for her to help her be the best she can be.  There are days when it is not easy to watch her me.  It kills me.  But the days she overcomes obstacles in her way is so rewarding.  For both of us.

Today was an adjustment day.  Her walking and shaking hasn't really improved and I am waiting to hear back from her doctor in NYC.  But what was interesting was her "Anne Sullivan" knew she was going today and asked her if she liked going to the which she answered "Ya".  And then "Anne Sullivan" asked if she felt better after she went and she said "ya" again.

I believe it!  Minutes before we left for the appointment, she was starting to not be happy.  As soon as I said it was time to go see Dr. M she jumped up off the sofa and had a smile on her face!  And has had one ever since!

I promised my daughter when she was diagnosed with Rett Syndrome 6 1/2 years ago I would never give up on her.  And I will not.  Whether is it is educationally, emotionally, physically, name it....I will never give up on her.  We will fight the fight day at a time.

Here is a quote for today....

God can restore what is broken and change it into something amazing.  All you need is faith- Joel 2:25

Life has no limitations.  Except the ones you make- Author Unknown

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