Friday, January 13, 2012
To My Daughter's Teachers , Coaches, Friends, & Family
It kind of seems like I have been on a "downer" lately if you are following my blog. Sorry about that.
Because here I go.
I had forgotten about the NOTES feature on facebook and recently re -read the ones I had written before I blogged. It has inspired me to write this open letter to the folks mentioned in my post title.
Here's the original note:
Tonight was another difficult night of homework with my dear little girl. How my heart aches for her. At one point we ended up (AGAIN) with me holding her (and the truth is she is not so little anymore) and both of us crying. We were crying but I think we both were angry. Angry at the woman who birthed her and made the choice to drink and or take drugs while she was pregnant. Angry because someone else's actions have affected my little girl's entire life though she herself was guilty of nothing but being conceived. Angry because most of the other kids in her class can read so easily. Angry because other kids can remember their homework assignments since their short term memories are still so young and childlike and unaffected by brain damage. Angry because their moms don't have to spell every single word they want to write when doing simple essay questions. Angry because no one else in her class wears hearing aids yet still doesn't hear that great. Angry because she wants so much to be able to control her behavior and not make noises or be so loud or have sudden outbursts of mean words. Angry because her left leg is much shorter than the right leg and she has to have yet another surgery to get it CLOSE to being normal. Angry because we both know she WANTS to understand cause and effect and behavior and consequences but she just CAN'T. Angry because no matter what she will always be different and have these problems and there is NOTHING WE CAN DO TO FIX IT!
But now that we have had this moment of being angry about all of those things, we can be happy and thankful that we have each other. Happy that even though there is nothing we can do about all of the "issues" we deal with every day, we love each other and always will.
But it still makes my heart ache.
I had several very kind responses to my writing and posting this in 2009 for which I was so grateful. Emotional support is huge.
This week, I attended my child's IEP meeting at school. This was the first time that she was allowed to attend herself since next week she will be 14.
Towards the end I asked her to go get her things to get ready to go home. I talked for a couple minutes to the new school psychologist to let her know that cerebral palsy isn't our only disability. I wanted her to know that there are some things I believe my girl just will never be able to do well and that it is not for lack of trying.
Every single teacher that sent comments said that she is the hardest working student that they have in class. I have always heard that from her teachers. I so appreciate their hard work with her at school and as part of our community.
But I wish I could have shared the thoughts of that note with the teachers who had come in for a couple minutes to sign that they had attended the meeting. I wish that they could understand that she has come SO far in her behavior but there are still things in that sweet little brain that will never click.
I want them to know this when they shout at her during a ballgame for not remembering the right thing to do.
I want her friends to realize that she has a heart of gold that is tender and that she wants to please God with her life.
I want her siblings to not forget that she did not come into the world like they did, with loving parents waiting for her arrival and with all her brain cells functioning perfectly like theirs.
I want the people working the concession stand to know that using money scares her to death because her brain just can't grasp the concept of "how much is how much".
Yes, I have been frustrated and at times wondered what I had gotten myself into with my child.
But I remember our Russian translator crying as we left the country the first time after our visit with our soon-to-be daughter. She told us that Anna would never have been allowed to go to school or learn anything beyond day to day necessities because she was considered "defective" and "uneducable" in their orphanage system.
We have been blessed to be able to have a part in seeing such a miracle as Anna in our lives.