Friday, February 23, 2007

my son is mentally retarded

You know...I meet a LOT of people. I have to relay the whole fragile x story. (how many kids I have, who has what diagnosis, blah blah blah....) I've done this for almost16 years now. Jonathan was diagnosed before he was 3.

When he was diagnosed, I forced myself to soften the blow of these words: mentally retarded. Let me tell was tough. I was a young mother, (I'd had him at age 19) and his diagnosis came as a welcome shock to me. I say welcome because I wanted to know. You can't fight what you don't know. At least this way, it had a name...I'll never in my life forget that day, sitting in the doctor's office, hearing him say that Jonathan's mind would never truly age, that he would be a child (mentally) forever. Sure, he's gained skills, but he'd never be truly independent. I had such a hard time with that. It was even harder when I realized that it was genetic and it would affect every decision I would ever make.

One of the decisions was to REALLY face the fact that I was the mother, the caregiver, the person responsible for someone who is mentally retarded. I had to get past the nasty taste those words left in my mouth. It took a long while. I would just say them over and over, until they sounded like nonsense to me. Until they didn't hurt. Until they didn't make me cry.

But I did it. It is just a part of who Jonathan is. It's like his amazing blue eyes. It's part of him. I can't change it. But I can accept it. And I do. Doesn't mean it doesn't frustrate me, it does. But I am powerless to change it. It humbles me. And does Jonathan.

There are some people who HATE those words. I can't judge them (even though in my heart, I do a little..) because you arrive at your own place on this path of grief. You accept it at your own rate. No one can shove you along any faster than your heart is willing to go. I stumbled for almost 3 years, until the doctors lifted that fog for me. I was READY to accept the diagnosis. And the words. Others are not.

I am comfortable, and not ashamed, of having a son who is mentally retarded.
When Jonathan was much younger, I would wonder if I would ever a "normal" child. Well, I do have a normal child…it’s PC to say “typical” or “neuro-typical”.
I don’t love him any more or less than I love Jonathan.

Why am I thinking about all of this right now?
Because I am working on a HUGE project for a service organization. It’s a photo calendar, 12 families, a variety of diagnoses…..An awareness tool that we’ll use to demonstrate that children with special needs are just like you, they come from families who love them, they have hobbies and interests, etc. Of course, I am the principal photographer for all the families….

And with this project, it hits home. How even though I’ve accepted Jonathan’s diagnosis for going on 16 years, that the grieving is never truly over….it just lets you breathe. Then it smacks you over the head somedays. Take for example; Jonathan will be 19 this summer. I was someone’s mother at 19, and he’s never even kissed a girl….My point is that his life is so much different than what I had planned for him.

Acceptance is hard.
It’s a lifelong process.


Linda said...

this is what I love about you, Suz...I was just telling my sister that. You are not ashamed to tell it like it is. Mentally retarded is such a bad word for some...but you know what? You've found the comfort zone it in. You can say it without it being a negative term. It's a fact of life. The term retarded means to slow up especially by preventing or hindering advance or accomplishment (compliments of MW online). Its French roots tell me that it means to slow or stop. So all you mean when you say your son is mentally retarded, is that his mental capabilities are slowed or stopped.

Nothing more. Don't read into it. What an awesome mother you are.

rennratt said...

Your son is beautiful. He is also blessed to have you as a mom.

I have no doubt that he KNOWS this.

Congratulations for being the primary photographer for this project! May it succeed beyond your wildest dreams.

Anam_Kihaku said...

he has amazing eye! youa re a fab mum and he shows love. that is what matters most.

Susan said...

What Linda said. I have told you you are amazing and I am re-iterating it again here :)