Wednesday, May 29, 2013


The following was written by  fellow-blogger, Claire, at  Life With a Severely Disabled Child
I believe it captures the truth of this life quite well. It's one of those that hangs on my refrigerator as a reminder.

In this moment I accept that I have been given care of a very fragile person.
I accept that I may likely never know why this task has been passed to me.
In this moment, I accept that I need not know more than the fact that what I do has value.

With that, I will care for this person to the best of my abilities.
I will forgive myself for the days I could do better, but don't.
I will forgive myself for the days I would do better, but cannot.

I seek to have clarity of thought that I might make choices most in balance with the many intertwining lives, including my own.
I seek to be supported in whatever ways financial and emotional that will maintain this balance.
I seek to learn how to draw from a well of infinite patience and energy.

I open myself up to the possibility of joy, of fulfillment, and of grace.
I accept that, in this moment, it is all I can do.

~Claire Roy

Sunday, May 26, 2013

Good Things

We kicked off Memorial Day weekend by giving Daniel's new neck ring a try. We have a winner! He was able to move around the pool independently, something he loves. After about an hour and a half he crashed on the porch for a long nap stretched out on a comfy chair. It was good.

I've tried something new for the pool every year for the past several, and this ring was recommended by a good friend who uses it with both her girls who have severe disabilites. To say it's a godsend is really an understatement. The feeling of freedom he has in the water is worth every penny I paid for it, and it was a lot less expensive than the big yellow contraption I bought last year that didn't pan out well.

With his sister trying the new neck ring for the first time

In other news, we have a new physical therapist and a state-of-the-art hydaulic stander on the way. This is a pic of he and I after school/work Friday evening trying it out. This doesn't capture the huge smile that he had when he first stood in it, but believe me, the boy loves it.

Physical Therapy on a Friday in May

We're counting down the days until break (June 7 is our last day) and taking note of all these blessings, too. Here's to summer!

Friday, May 3, 2013

Sorrow Makes Us All Children Again ~ Ralph Waldo Emerson

I guess that's why when I think of my mom, I don't remember recent events as much as things from grade school. Yesterday on the drive home from work,  a memory of myself at age ten appeared in my head as clear as a videotape. 1972, the long "maxi" dress she'd bought me that made me so happy. Fleeting, happy images.

Last night when I did my meditation, I couldn't quiet my mind. Vivid scenes of her taking me to Fairview Plaza to shop at the dime store clicked on instead. We've made that trip hundreds of times. I kissed her wedding rings that I'm wearing, and blessed her and myself. Then I cried, and tried again to still my inner chatter. Success denied. I could only see her cooking dinner while I watched Mary Tyler Moore reruns in the living room.

If mourning means I'm a little girl for awhile, I will just have to roll with it. For most of the day I'm Nurse Carolyn, taking care of the kids with diabetes at the elementary school where I work. When I walk down the halls, though, I want to call home and ask mom to pick me up because I'm sick.