Hard Facts

Lisbeth with her Guardian Angel, Milkweed

When Lisbeth first became ill I read everything that I could get my hands on about seizure disorders, especially anything written by other parents. One thing I read that has remained emblazoned in my mind is a matter of fact comment by one mother. She said, Get used to the ER - you will spend alot of time there.

And she was right.

Among other challenges, Lisbeth has uncontrolled grand mal seizures. Most times we can tell that she's about to have a seizure and can catch her, or move her to the floor or another safe surface. Unfortunately there are other times when there is no warning and she goes down like a felled tree.

Lisbeth had a seizure in her bathroom yesterday while washing her hands. She fell backwards and hit her head on the molding and gashed her head open. Her staff called the ambulance and my husband and I met them at the hospital. Lis had a CAT scan which thankfully came back negative and then received 7 staples in the back of her head. She was postictal through all of this and will not remember it. But she'll sure be sore today.

Yes, the ER is a familiar place - Lis has been there many times with injuries and other complications due to her seizures. Though it is familiar, it never feels routine. My husband and I are re-traumatized with every event that takes us back to the hospital. My heart is full and heavy this morning.

Lisbeth is as independent as she can be, but as is made obvious here, she is extremely dependent on her care givers. We were informed this week that the state wants to cut funding for staffing at Lisbeth's house. She shares her house with a young man with severe autism who also requires round the clock one-on-one care. The state is proposing that there be one staff person taking care of both individuals. This would be impossible.

So we have a fight ahead of us. We have to make a solid case that Lisbeth and her housemate cannot share a care giver - this is part of why I am posting about this here. I have started to document what life is like for these courageous young folks with special needs, and what a day on the job is like for their equally courageous and dedicated caregivers.

If you are prone to do such things, please send some prayers our way. We are going to need them.