Sunday, April 17, 2011

Anonymous....You're Not Alone! We Are All Here With You.

This heartfelt letter was posted by "Anonymous"....  I have looked over your site a lot inthe past, but just watched my first videos. my son is 6 with ASD and you are inspiring me to stay focused. I could see a lot of my son in Nicky. It makes me both sad and happy. I have cried almost every day for five years. People say I am a an amazing mother and advocate for my child. I do everything I am supposed to. I feel that no one will ever truly understand and it isolates me. What gives you strength? Do you still cry in bed about his future? I feel I will be lost inthis sadness forever...and of course I do not wnt to be...for myself or for my children.

Here's my response
 Dear Anonymous, 
NO, you are not alone. I still cry.  I cry mostly when I'm exhausted to my core and when we're around typical kids; growing, playing, developing, moving, just being on the path I thought would be our path. I think I will always have tears for the life I envisioned for Nicky.  Second, You are an amazing mother because you advocate for your child, period. I am an amazing mother because I do all I can, but I understand how you feel.  I never feel like an amazing mother, I feel like I'm doing the best I can, I'm supposed to do that, and I'm grateful I can. What I don't share is that deep inside my fear is that I'm not amazing because there's a part of me that believes if I was amazing my efforts would cure Nicky. It's an irrational feeling of inadequacy. I think comes with the reality that as a mom, what I want to do most, is to protect my children and make everything okay, and when it comes to autism I can't do either.  

As for feeling as if people don't understand, wow Nicky has forever changed how I look at empathy, sympathy and compassion. I am blessed with the most supportive, compassionate and sympathetic people in the world around me, without them I have no idea how I would have survived. Still there are times I feel completely alone and I know that I too cannot fully and completely understand anyone else's life either, so I think everyone feels this way sometimes. 

You ask "what gives me strength" in a word I don't know.  I do know: I just know that I keep going. I advocate, I love, I push, I deny, I keep busy, I help others, I try to take one day at a time, 

 because as crazy as it may sounds . S First I share because we all need to know we are not alone. We all need help on this journey to parent our special kids. I remember when Nicky was first diagnosed, I saw him in every child who had his diganosis. If I saw a child being restrained, that was Nicky, if I saw a teenager who was walking in circles repeating, that was Nicky. Anything was Nicky because I didn't know. 

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