Lost in the Sheets
Have you ever seen a baby bird work its way out of a shell to be born and become part of the world?
Did you at some point feel compelled to help even though odds were you might only do harmr?
She was lost among the shell white sheets and stiff white blankets that had been her home for weeks, going on two months. It took me a quick moment that always felt too long to spot her well, make sure she still breathed and calm myself. I rarely left the room to avoid that feeling, that coming back in, wondering what I would find.
I’d rather see that needle coming if it must, yet prayed I’d never have to take that test. Four surgeries in three month's time had taken her a bit farther than her body wanted to go.
Now she lay in intensive care with needles and machines all around like death sentinels just marking time, recording her demise. None of this was acceptable on any level. None of it was a reality I could comprehend.
My beautiful daughter, vibrant, smart, funny, caring…oh so caring, but not near death, not hanging on by a thread while her besieged kidneys were daily cleansed with dialysis, while her plasma was daily replaced to try to banish three ugly letters…
What the heck did that mean? How could three little letters hold so much power over her, our lives? I still can’t remember what they stand for without looking them up. I only remember the danger they posed, the pain.
Long words, three, threatening, unkind, awful words. Weren’t the four surgeries and the worry and pain of recovery from all those enough dues for whatever payment collector it was out there sapping the life from my child?
What had I done?
How had I failed her?
How could I leave her for a moment?
The nurses tried to make me.
Only one succeeded, one time, because surely the more dedicated to suffering with her I was the safer she would be.
My sweet, beautiful girl.
What made us so special? Many out there had babies with cancer and all kinds of terribleness and here my daughter was, at least fully grown with babes of her own. What right had I to think this was too much, or unfair?
But my daughter was in pain, and scared and I could do nothing but witness. I could do nothing but be there, hold her hand when they let me, soothe her, when she let me.
Nothing else mattered.
My husband and other family members were at home and I did not care right then if I ever saw them again. I didn’t care if work was hard or good, or what the kid’s grades were or if they got to bed on time. I didn’t care if they brushed their teeth, or if they ate their vegetables.
My daughter was lost in the sheets. The shell white, scratchy sheets and I didn’t know if she would disappear forever or come back to me.
I must have faith.
God, Please…thank You…Amen.
Not so fast. She’s back in the hospital for Christmas 2010. Every other day outpatient blood tests are not saying happy things. I cannot be with her this time.
I have pneumonia. I know, they told me to take care of myself. I didn’t listen, but how could I hear that when my daughters blood was pounding in my ears?
Another visit with the sheets, but this time, for only a week. Now they are trying chemo to fight this thing. It is working! My pneumonia is also improving .
Thank You again, God, amen.
We are approaching two years now with no relapse. That can happen but we are exercising our faith some more.
Thank You God. In You all things are possible.
My “Little Chickadee” as I have called her since she was a tiny thing escaped her egg shell just fine.
“Thrombotic thrombocytopenic purpura
or Moschcowitz syndrome:822
) is a rare disorder
of the blood-coagulation
system, causing extensive microscopic clots to form in the small blood vessels throughout the body.
These small blood clots, called thromboses
, can damage many organs including the kidneys, heart and brain. In the era before effective treatment with plasma exchange
, the fatality rate was about 90%. With plasma exchange, survival at six months is around 80%. Immunosuppressants, such as glucocorticoids
, or cyclosporine
may also be used if there is relapse or recurrence following plasma exchange...”
Kathy Adams 2012