Monday, December 7, 2009

Guest Blogger: My real self

I wrote this 29 days ago.  Feel strong enough to post it today. 

I remember once my "sister" (from another mother) Snarky Belle once said how much she weighed on her blog. It must have felt liberating. The truth I hear seems to set you free.

Here is the truth. I cried on Monday at the appointment with Seth's specialist, which I never do. She is there to run interface with the school, us, the doctors. Sort of a Cancer Coordinator without the cancer part. She is a pyschologist.

I didn't even want to type that word just now. My boy has a pyschologist AND to add salt to the wound, now a pyschiatrist.

I am embarrassed. I never asked Mr. Fun. Perhaps he is embarrassed too.

I cried because I am tired. I have been dealing with serious health issues for someone else or myself for over three years. I know I have caregiver fatigue. I miss my old life. Rotary. Lunch with girlfriends. Being alone during the day. Shopping. Serving....oh, I am serving now. But when you choose who and when you serve, it seems funner. More rewarding.

She says my feelings are expected. She says we are amazing. She says she uses our experience as the model family of coping. Hard to believe as I want to lay down in the fetal position, nursing a strong hot chocolate and watching endless reruns of "Whose Line Is It Anyway?"

There is a certain lonliness that comes from nursing a chronically ill child. A lonliness that one doesn't really understand until they do it. Just like anything I guess. Losing a child, adopting a child, have a wayward child. This is our child trial.

I read this in the newspaper the other day and it made me feel connected. It was response to some Dear Abby article and two mothers of chronically ill children wrote in.

And I quote:
Mother One:
Very few parents have the emotional energy, not to mention the time to be an advocate for their child's special needs (in a fundraising or community way). Our entire lives center around our children and their doctor's appointments, therapy, special schooling, adaptive schedule, medicines, equipment, etc.

Mother Two:
No one fully understands what a parent with a child with a disability goes through. First there is the emotional aspect. We grieve. It's not the same kind of grieving you do after a death. This is grieving that never ends. It cycles over and over. If you are not crying you are angry.

Some days you can accept and breathe; other days, you just can't. Anything can set you back and suddenly you are sobbing again. There is also the problem of not getting services you need. Once children are out of the school system, they sit and languish at home with no services. Living with that, we often can't never get or hold down jobs.

I don't usually feel like Mother Two.  I have more hope than that.  Found in my religious beliefs.  But even the faithful (or mostly faithful depending on the day) get tired.