There is a rhythm to the floor. Lots of comings and going. Shift changes at 7:00. All the nurses are huddled at the pod desks and there is a significant amount of information exchanged. The trays of food that won't be eaten are delivered, the linen guy shows up and house keeping begins their constant vigil and battle against germs and the never ending detris that collects. Caps, bits of uneaten popcorn, scraps of paper. The TBI(Radiation) kids are being bundled up by the ambulance drivers and whisked away to University. Lots of busy movement and activity.
The kids are passed out. Tracy always speculated that as the day became busier, the kids withdrew to some quiet place so not to participate in the ensuing busy activity.
Parents are sneaking out of their rooms in search of coffee (8 shots for me this AM) and a shower, a moment on the computer before waiting for the Docs to show up. We are all waiting. Some are waiting for test results, some are waiting for discharge, some are waiting for good news, some are expecting bad.
I have come to realize we are on the quiet part of the floor. The newly diagnosed are running around with that great fear and anxiety hung around their necks. They are trying to hard to keep it together and are reading and talking and consulting and doing more talking and texting and .......... I try to let them know, it gets better.
I endlessly approach them and try to help. One poor Mom was running around with her son's tray trying to find a spot to put it. They were trying to clear out their son's room. I gave her some direction. Sort of like the older kids in school, we try to be kind to the kindergartners. Help them find the good Starbucks, let them know they can ask for real food for their child. Just let them know we all can survive this process, this place and help them get into step and accept the rhythm
So here we sit. I am not anxious. No, lets see what I have planned on my list today:
1. Rearrange my anti-room so I can watch the sun rise and set, do 10 miles on the bike, string all the cranes, write thank-you notes, begin a book Dummies Guide to the SCCA for the weary parent, finish my book, answer all my e-mails, play words with friends, have coffee with three or four moms, Draft a questionnaire for the nurses, parents and kids.......No anxiety here.
We are waiting for Ellie May and Pearl Ann to finish the job they started 4 days and I am going to stay as close as I can to Mary-Elizabeth.
Twenty Years, Two Hundred and Forty Months, Seven Thousand Days, and Three Hundred Days. Since we started chasing Leukemia.
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January
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- All I want in 2012 is to make it to 2013.
- Day 14 a Count Down to Day 8
- Day 13,
- Day 12......Hopefully Transplant Approval.
- NO NEW CAR.... THE TWO UNITS OF CORD BLOOD
- Day 11
- Day 10
- DAY 9....Paper
- Day 8 and counting.
- Poet Samuel Green, says it better then I can.
- Day 7,
- Day 6, Radiation
- DAY 5 Worry, Wondering Working and Waiting.
- Date Books and Day 4, Looks like a go.
- Count down
- Friday the 13th......
- 48 Hours....
- So......
- My Novena............
- We Begin...... Day 8 count down to Transplant.
- Day -7.... Or how I Iost the bet about the Oreo M...
- So when they give you fluids, they want them back....
- Day -5 Really.... Now her bone marrow wants to...
- Day -4 of Bone Marrow Slaughter and Dose -8 and -...
- Day -3 Two more doses of Radiation down. 5 to go
- Day -2..... Little Steps
- Day -1 or So How does this work?????
- Day 0
- Day 1 or the Girls are Settling in.
- Day+2 Or Really..... You don't Wash the Lettuce!
- Day 3, no signs yet. of the girls..... but then w...
- so...... Day 4...
- Day +5 and +6 working for solutions
- Day +7 and the search for answers and the right to...
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January
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3 comments:
This is probably one of the most amazing entries you have written (not that most of them aren't beyond amazing). You capture so much.
I hope you realize you have a book here. When the time comes, I will try to help you connect with my editor at Random House (or through her to the right one for you).
Stay by ME for me, too.
Love and pr---rs.
Roslyn
I Love you and I love Mary Elizabeth. You are the oscar winner of Mom's forever, I honor you as one of the best. It is amazing what we have inside of us to get along. You are my hero Sally, ME is the best of everything in the world.
Love and surrounding you with hugs and good karma. x0x0x0Carolyn
Reading your blog brings it all back for me, such crisp clear memories. It was just over a year ago we were going through this at the Transplant Center in Salt Lake. Thank you for writing this blog. Our healing may be more emotional than physical now. Still healing....reading your blog helps. The good news: life does get better from here on out.
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