Tuesday, August 19, 2014

Letter to the mom who used to be me...

Dear mom who used to be me,

Maybe it was a long time ago, or maybe just a few years, but I know you are out there. You are the mother who used to be just like me. You were single, you wanted to pull your hair out on a daily basis, you worked, or maybe you stayed home, but our biggest similarity is, you had children with special needs too.

Who really cares about the label? Maybe your kids had Autism, Downs Syndrome, or one of thousands of other conditions. Maybe they were emotionally delayed, maybe they had behavioral problems. Maybe it was so long ago that no one really knew what to call it.

One thing I am sure of is that like me you stayed up late at night, and you worried. You worried about tomorrow, you worried about the first day of school, you worried about your child making friends.

Were you afraid? While other moms were celebrating the first day of school, were you paralyzed with fear? Were you afraid of sending your child out into a very large world without you? One where people are not always kind? Where around every corner lurks the bullies of your nightmares? The ones who would hurt your child, emotionally, mentally, and probably even physically?

Another thing I'm sure of is that you were tired, beyond tired. You were exhausted, not a normal kind of tired, but a exhaustion that comes from never having enough hours in the day, never being able to slow down, always moving on, to the next appointment, the next session, the next meeting.

While other moms attended PTA meetings and Little League games, did you feel like you didn't belong? Like an outsider. Were you the mom whose child didn't like sports, the mom who couldn't attend PTA meetings at school, because you were always to busy doing other things,  more important things? You were in a therapy session, or attending a IEP meeting, maybe you were able to grab a few moments to yourself at last.

Did you ever get angry? When you heard other parents complaining about "trivial" things? Did you ever want to scream at them? Ask them if they know what it's like to watch their child suffer, in the hospital, with tubes, and wires, and the fear. The fear of watching your baby stop breathing, of seeing a machine breath for your child. The fear of watching the monitor as their heart rate drops, and drops some more. Seeing doctors and nurses work on your child, and not knowing, if this is it.

Did you feel guilty? Guilty about getting angry? Guilty about not having more faith? Guilty about not being thankful enough. After all, your child was still there, still with you, in spite of everything.

What happened as your child got older? Did they attend the homecoming dance, the prom? Did they call their friends on the phone just to chat? Or did they hide in their room? Playing video games, hiding from a society that made them uncomfortable? A society that didn't really care.

How is your child doing today? Are they happy? Well adjusted. Did they get married? Do they have a family? Do you have grandchildren? Or are you still caring for that child? At a time with most other parents are taking second honeymoons, and talking about their empty nest....what are you doing?

I guess my biggest question is....does it really get easier? Or do you just get used to it? Do you adjust? Are you satisfied with your life and the way things turned out? And above all, the most important thing....are they happy?

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