|The more I talk to mothers who have disabled children, the more I understand the immense challenges we’ve all had to deal with. It reminds me of what we all have in common, the loneliness we’ve experienced, and the common thread that links us as mothers of special ones. I wrote this post after I finished an email to a writing friend. She’s a mother of a teenaged son who lives in a residential facility. He lives there because his uncontrollable, violent outbursts were a threat to her and her family. I imagine she’s wracked with guilt, yet she did the right thing. My email commended her for her devotion to her family. I commented on the endless and selfless ways she’s helped her son throughout the years. I commended her bravery and courage. After I sent the email, I realized I could say the same things about myself. My thoughts skipped like a ping pong ball. I thought about the years Jessica has lived in the group home. I thought about the day I moved her there. I am grateful that Jessica, unlike my friend’s son, has never been violent. I’ve witnessed, firsthand, how that looks. Years ago, one of Jessica’ friends bent Jessica’s finger so hard, the teacher thought it might be broken. I took Jessica for x-rays. I remember when the girl’s mother told me her daughter threw a brick (where did she find a brick?) through the T.V! Let me be grateful for small miracles.|
Of course there’s also horror stories about group homes. Thankfully, Jessica hasn’t experienced any abuse, but it’s a parent’s worst nightmare. The mother who recommended Jessica’s group home previously had her son in a Chicago home until she discovered the truth and had to rescue him. The story went like this: something about horrible conditions, lack of medical care, etc. The boy was nonverbal, so he couldn’t call for help. I don’t think he even knows how to use a phone. I’ve always imagined how this made my friend feel. What about her guilt? I’ve considered asking her – “Do you feel guilty about what happened?” but she’s so pragmatic, I imagine this never crossed her mind. I admire this woman. She’s a bright, strong, sensible mother. I wonder if the same thing happened to me, what would I do? I’m pretty sure I’d still be blaming myself. When you have a special needs child, you never stop worrying. The angst, the pain, the fear, the worry, those emotions never completely disappear. I still worry about Jessica, although not as much as I used to. She appears to be thriving in her group home. True, there are times when she gets intimidated and refuses to explain what’s wrong. I used to call it her autistic moments, because she closes down like a shuttered storefront. These minor issues pale when I think of my friend’s son, the boy in the residential treatment center. Whenever Jessica has an issue with the staff, it’s usually because she’s stubborn. They might tell her to get dressed and she’s unwilling to cooperate. One time they called and told me they wanted her to brush her teeth and she refused. I’m grateful these were minor problems. Many times, I’ve felt sorry for myself. It’s pointless, I know, but I can’t help feeling it. What’s arisen out of these experiences is an incredible story. While I still don’t fully accept Jessica’s limitations, I know I have to. It’s obvious I have. I have a responsibility to help Jessica and I refuse to let go. Part of me demands I deal with it. The other part yells – “No I don’t want to!”
I remind myself something good came from my experiences as a mother of a special needs child. I wrote a book. I know I’m the queen of denial (everyone in my writing class says so) – but I try and use this to my advantage. One thing everyone says about my writing is how brutally honest I am. I question if I can show my readers the depths of what I felt. What I still feel to this day. Will people want to read my story? Is it unusual enough? Is it compelling? There’s a reason I was driven to write it; it hurt, I hurt.
I am a mother.