Friday, December 5, 2008

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.

20 comments:

Anonymous said...

Oh Mart. I'm so sad to hear that Lis, you and Garry have had another round that sent Lis and you through the ER. I hold you all so dearly in my heart it brings me to tears to hear of what you go through, especially when it drops to the level of ER-dom. I am and will surround you all in healing light, for lis, white, of course. I wish for you all a gentle time so that all your hearts and Lis' body may heal well and fully.
With love and light,
Jo-an, once upon a time, of Legos

Martha Miller said...

Thankyou, Lego Lady of the Yellow Hair...

xxoo
M

Susan Beauchemin said...

Nicely said Jo, I can feel the white light surrounding Lis, Martha and Garry.

SMPS said...

If Jon and I can do anything "practical" like writing a supporting letter, etc., we would be very glad to. We send our love to you all. And Martha, you come from a family whose faithfulness to family is beautiful to behold. love, Shawn

artslice said...

What a terrible gash on her head....must have been a very hard fall. Hope she's feeling better soon. My goodness, what a situation. I'm sending you all lots of good vibrations and positive energy!

Martha Miller said...

I just love the word verifications - today it is "twiver" would that be a twin river?

Thankyou, Sue and Jo-an:
the twin river of white light must be working because Lisbeth is bouncing right back. She is clearer this mornng, she's not having any more pain, and she's looking forward to her weekely sleepover with us tonight!

xxoo

Martha Miller said...

Thankyou Shawn and Jon!

Yes, we do have a remarkable family - I am glad that you are part of it! We are so blessed...

xxoo

Martha Miller said...

Thankyou Brenda for the good vibrations and positive energy!! It really does help. Lisbeth needs alot of support of all kinds!

xxoo

Captain Nick Sparrow said...

Poor kid!

I am sending hearts, stars, and $$$ thoughts your way!

Martha Miller said...

Thankyou Captain Sparrow!

Don Gray said...

Lisbeth is such a beautiful young woman. I'm so sorry she (and all of you) must go through this. Sending healing thoughts.

Paint Squared said...

Oh, Martha. My heart is with you all. You are in my thoughts & prayers. I'm so glad to read that Lisbeth is bouncing back and at this moment, probably enjoying her weekend with you. Warm hearts & love to you all.

Martha Miller said...

Thankyou for your healing thoughts, Don! Lisbeth is bouncing back. She's beautiful and has an amazingly strong spirit!

Martha Miller said...

Hi Elizabeth

Thankyou for your warm wishes!! Lisbeth and her helper are off shopping today for a small Christmas tree for her and her sweet cat Little Milkweed. She can't have a real tree at her house(fire hazard)so I think she will find something quite spangly and sparkly! She is feeling much improved, bless her.

Katie said...

Sorry to hear about Lisbeth, we're glad to that she is feeling better. Our thoughts are with you and the struggle with the State. I can't imagine what would happen if Adam's brother didn't have all of his careworkers.

Martha Miller said...

Hi Katie

Thankyou!!
Does Adam's brother have special needs?
I hope that you are all well and enjoying the season! (How is that little red headed cutie??)

xo
Auntie Martha

Ron said...

My thoughts are with you, Martha. Your love and devotion as a mother, not to mention your stamina, are inspiring.

And then there is Milkweed! I like the photo of Milkweed keeping watch over Lisbeth.

Martha Miller said...

Hi Ron - thanks so much. Yes, look at Milkweed! She's the Best.

Katie said...

Yeah, Adam's half brother is 42 and challenged. He livs with others in a group home, a few over the last few years. He does good on his own, but needs supervision.

Grey is good, but he just met Santa and DID NOT like him. Check out our blog to see the funny pic.

Martha Miller said...

Katie, how do I get to your blog? When I click on your avatar it doesn't come up...