right now I feel so helpless, lost... She's awake, responding slowly. I don't know what to ask. She's not in pain right now, but tears up. Her heartrate is up and she's getting sluggish. And I don't know what to ask.
I've been sitting here all day, looking for someone out there that can offer some treatment, hope, or something for this condition. I know she has to get to rehab and start. but someone out there has to be an expert in this type of stroke, this syndrome...
I'm so angry and hurt that my sweet girl was allowed to have a stroke. It isn't fair. I know life isn't supposed to be, but damn. And now she's alone inside and can't move...i'm thrashing around in the dark trying to find her...
i wish they could take that part of my brain and fix her. take something. do something.
I just realized that moving from an academic/research hospital to a commercial hospital - they won't be looking at who out there can do what for her. we have to.
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The Diving Bell and the Butterfly
ReplyDeleteIt's a book by a former editor, Jean-Dominique Bauby. At 43 he suffered a massive stroke and ended up a victim of Locked In Syndrome. Using only his left eye to communicate, he managed to write this memoir. My linguistics teacher gave it to me and though I haven't finished it, I recommend it.
If nothing else, this book shows that Sara is not alone--and her life is far from over. Things are tough, and they will be for a while; you know that better than anyone. But if someone can write a book using one eye, then I bet Sara could conquer the world right from her hospital bed.
I'm rooting for her, and for you.
-Kim C.
Kristina,
ReplyDeleteHang in there! Every mother who reads this knows exactly how you feel -- how often we wish that we could pay a price so that our children don't have to. We can't, of course; we can just be as supportive, loving, tenacious and fierce as they need us to be, just like you have been for Sara through this whole ordeal. Life has dealt her a crappy hand in this, but she is a lucky girl to have you on her side.
Your strength through this amazes many people. Be sure to let us know what we can do to help.
Another Tech High Mom
My patient quality care connection at Kaiser (Scrabble buddy) is in NYC. She should be back by the weekend. I want her to talk to you if she will about your concerns. Kaiser care can be really great. If you need someone to sit with her for a day or the night, let me know. Sara, honey, I know this is really scary but one you're settled it will be OK.
ReplyDeleteHattems
Kristina - my heart is breaking right now for you and Sara. You are living every mother's nightmare, having to sit and watch your beautiful daughter go through this. But like I said before, you and Sara are two of the strongest women I have ever known and I have admired that quality in you both since the day we met. Believe me, I know how difficult it is to ask for help, but there are so many of us here who would do whatever you need even if it's just to sit with you and hold your hand. Please let us know what we can do for you and Sara.
ReplyDeleteMarsha
God bless you, Sara. I have been praying for you. Your grandfather is keeping us updated. May blessings pour out on you and your family.
ReplyDeleteLove,
LK, Fort Worth, Texas