Sunday, February 28, 2010

Letter to a fellow mommy

I wrote this letter to a woman who is a friend-but not a close friend. Last fall her son completely unexpectedly died in the middle of the night. It was tragic. It hit home even more so in that our sons were the same age and carried the same diagnosis. I went to the funeral along with hundreds of others. I sobbed. But I held off on contacting her until now. Today it seemed right. I remember when my 20-something year old friend lost her Mom. I learned from her that the pain goes on long after the funeral and all of the follow-up calls and meals have occurred. As I was feeling over-whelmed by all the to-dos, forgot-to-dos, wish-I-hads this was very cathartic.  People, family, friends, love. That is what matters. I refer to her son as "Elvis" in copy of the letter. Thanks Elvis-you helped me today.

You pop onto my mind fairly frequently and I thought I'd write. I can only imagine that decades and yet only seconds have gone by since you lost your guy.
And I know all the very many people who love your family were probably most present initially. So here I am now.
Every so often I see a boy that looks like Elvis and it catches my breath. Then I think how that must happen to you constantly.

He was a model for me when I have talked to Aj that he has autism/PDD (what the fuckk ever). Initially I couldn't use the word "autism" because to him that was how I had talked about my friend's kids who had difficulties and that was why-for example our little buddies who are non-verbal or with limited language.
He was then put off that something that described them could describe him. So I told him, "Well-you know who else has autism? Elvis does". 
So thanks to Elvis for being such a lovely model. Aj then referred to him as, "My friend Elvis who has a-little-bit-of-autism." 

We lost our dear 13 year old lab last June. Aj asked me once if I thought Elvis was playing with Sierra in heaven. I told I thought yes he was.That I think Elvis really liked dogs and now Sierra has someone to play fetch with.

So I cried when I wrote this. And I delayed writing it because I thought it would make you cry, too. But I decided you probably already cry. 
And I wanted you to know that there is still a lot of love out there for you and Elvis and your family.

be well

Monday, February 08, 2010

Nice research findings

I found a research study summary in my professional journal that brought a smile to my face (see link below). Basically a longitudinal study of kids from age 5 to 25. Participants included kids with language delays/disorders, kids with speech (articulation disorders) and typical kids. The majority of the kids with language difficulties persisted with lower language, cognitive and occupational skills then typical peers at age 25. I am not surprised by that. What made me happy is the news that the individuals rated their quality of life to be just as good as the typical group. There was of course a strong correlation with family support.

Long ago I decided that my goal for Aj was for him to be happy. Not Harvard, Stanford or maybe even any college graduate-but happiness. My hope is that he will grow up to be a happy individual who can contribute to society. I am confident this will be the case.

Thursday, February 04, 2010

The "Which reminds me" Cycle

Granny needs her hair done
She needs that sore on her leg looked at
She needs to go to the bank
I need to go to attorney for medical power of attorney and all that stuff

Which reminds of aj
the incomplete iep
the difficult behaviors
the lack of friends
the therapy he should be having
the dentist he should have seen
the unschedule eye exam

Which reminds me of Ki
my sweet girl who daily wanders alone on the playground
who is uncomfortable in her beautiful skin
who is sensitive and searching

Which reminds me of my business
the ways i am not contributing to its success

Which reminds me of my husband
my sweet partner
who is truly a partner
he contributes to caring for kids, cooking, cleaning, playing ball, driving to appointments...
I went out with him once last year
I kept my end of the bargain sometime then too

Which may remind me of me
the friendships that I have left unwatered
the mess i live in
the unscheduled doctor, dentist, eye appointments

This ugly cycle
Every so often it grabs me
pulls my breath and sucks at my soul

Then I stabilize
not totally- because all of that is always there
But it isn't always so big
And I can breathe
And my soul sort of settles
Soon it won't all feel so big
That is how it goes

Wednesday, February 03, 2010

The Visitor

Today we talked, Granny and I.
I told her he was coming to visit.
He'd be here for dinner.
What time she asked.
Then she asked again.
She said she didn't know he was coming.
I snapped at her. I told her- I told you, I'm sorry you don't remember.

I snap at her often, daily, many times daily.
I feel angry at me, fatigued, guilty.

He comes, we have dinner.
We talk, he shares stories from the past.
Toward evenings end Granny nods and agrees when conversation warrants.
I sense her comments driven by obligation, not understanding.

We plan for lunch tomorrow.
The three of us.
He'll pick you up, we'll meet at my office.

Goodnight we say. So nice to see you.
Close the door, prepare for bed.

Judy, you say.
Judy, who was that young man that was here?

Mom, it was Richard.
Don't you remember?
He is your son.

The Climb

It's big,
like Half Dome.

Standing at the base
I see only granite,
no sky.
Feel still air,
no breeze.

Climb, climb.
Shed the shade,
seek the sun.
I carry no ropes,
see no hand holds.

Show me the path.
The one round the back.
Ascend the cables.

Breathe deep the summit air-
chilling, yet  relieving.