Tuesday, February 12, 2008

how i feel

Today, I feel alone. Isolated. Out-numbered.
I have lived with fragile x for almost 2 decades, knowingly.
Life with Jonathan has never been boring.
When he was little, his differences were cute, almost charming.
My sisters used to pick on him, on me, about his echolalia, his perseverations.
It was cute then.
Not so cute now.
I've always tried to be the bext Momma I could be.
In the past year, it's been the biggest challenge I've ever faced.
Today, as I sit across the table from hostile administrators, I will feel alone.
I'll have my husband by my side, but for many years, it was just me and Jonathan.
How do you help people to see your child, a young MAN, as a human being, with feelings, and a heart? With thoughts all his own? With problems, anxieties and pains? Instead, they see the sum of his parts.
So today, I'll try and help them to see more than that.


Anonymous said...

Good luck today Suzanne. Hopefully love, forgiveness, and a sense of good will toward your fellow man will prevail throughout your meeting today. My prayers and thoughts willl be with you.


Sue said...

Sweetie, my thoughts will be with you. I often find that raising children is a difficult job at best and to have such a difficult disability.....all I can do is give you kudos. You are a great mom who cares about her child.

Kristiem10 said...

I hope your meeting goes well. I can understand your feelings, though I have not been dealing with fxs as long. I will pray for you today.

Linda said...

been thinking about you all day....praying for you too...hope you are strong and doing well....

Paula Fasciano said...

ahhhh...no one else is his mommy, so no one gets J like you do. I feel like my day like the one you had is coming soon...it's in the air.