I hear that phrase a lot more than I would like to. Mostly from doctors who are asking if Samantha "acquired" Angelman Syndrome or if she was "just born that way". When I let them know that Samantha has Angelman Syndrome because of a 1 in 25,000 genetic game of chance, I tend to get the "Poor You" look.
Samantha was taken by ambulance to our local emergency room on Friday because of a ten plus minuet seizure. Her seizures are normally much shorter than that so, needless to say, we were a bit freaked out. I got the pity routine from the doctor who came in to examine Samantha as soon as we got there. I answered all the usual questions and gave all the usual information, but for some reason the usual "I'm so sorry" response I got from the doctor pissed me off this time.
I want people to UNDERSTAND that having a child with a disability IS hard. There are times when your entire life gets put on hold for operations or doctor's visits. There are very few nights that you get the chance to be anything or anyone OTHER than the parent of a child with special needs.
I can not remember the last time I had a night alone with my husband!
I want people to not give me a hard time about the fact that I can not drop everything at their phone call to go see a movie or have dinner with an old friend. I need people to realize that when I say I hurt too bad to move, I am NOT exaggerating! I want people to GET that my life is NOT easy.
I want UNDERSTANDING.
Not PITY.
Do not pity me for having a child that MAKES me slow down and notice all the LITTLE beautiful things in my life. Do not pity me for the weeks on end that I spend with my FAMILY instead of on more frivolous diversions. Do not pity me for KNOWING without the shadow of a doubt who I can call and count on in a crisis. (Who else that you know can comfortably call on their child's step-parent in an emergency?) Do not pity me for the hours of SOUL searching I have spent gaining a better understanding of myself and strengthening of my FAITH. Do not pity me for my DAUGHTER who has taught me so many things without ever saying a word.
If you must pity someone...
Save it for those who feel the need to say "I'm so sorry" about blessings they are unable to see.
Understand me, but never pity me.
4 comments:
Very well said Melissa! Know, that you and your little one are in our prayers and we think of ya'll often. I hope Samantha is doing better and that sometime soon you will get a break to just be with your husband.
I understand.
I wish I could tell you it gets better.
Keep the Faith
laurie - Thank you! My mom watched the kids a few days after this post so that Darrell and I could go see a movie. (My mom rocks!)
oldfartswife - Thanks. You too!
sol - looking for the blessings in everyday crap is hard sometimes, but it is one of the things that keeps me going on the days I can hardly move. look for the silver in all the clouds.
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