The murder of crows and their cacophony woke up everyone. Something was happening and we were not paying attention.
I am sure there are lots of parents that feel like this when they are trying to find out what is wrong with their child. Everyone has a diagnosis story.
Ours was swollen optic nerves, two months of scans and exams. Finally the sneaky little blasts flooded ME's blood stream and we were off to the races. (A race we still run and have had to do again.)
Bloody nose, cough, weird bruises, pain in the legs, lethargy, pain in the stomach. Often there are numerous trips to the doctor, the emergency room.
Then when they figure it out it is full bore press. There is no time to even breath. Life Flights, long admissions, surgeries to place ports and piccs and Hickmans. There are consultations and scans and blood given and taken away. Huge hubbub.. More noise.
The noise never ends. Everything beeps. Even things that were formerly silent. Thermometers, IV pumps, phone's, call buttons, beepers, fire alarms. Everything is trying to get your attention. It is sort of like "signage overload". When faced with too much information, we all just shut down.
I still wake to the pump alarm. It happens mostly when I am in that weird in between place of kind-a-sleeping. My mind had stored all the sounds for use at another time. Sort of like a squirrel and nuts.
This morning the Crows were alarmed. They are not quiet about their alarm. Everyone in the neighborhood heard them. That is what they wanted. They wanted to be heard and to be acknowledged. I am sure they are like us, the Cancer Moms and Dads. We are sitting in a corner of your world and we are screaming as loud as we can and no one truly understands the noise. We have a doctor writing articles about how cancer is very rare and very curable. We have a family that wrote a book wishing their children had cancer and not autism.
Hey, we are all just making lots of noise over here and we need some attention. Something is wrong. Very Very Wrong. We are a small group, a rare group, a very dissonant group. We have learned we have to be because what we are doing, is something lots of people don't understand.
We understand but please know we will keep up the noise for as long as it takes. It is a good song, a necessary harangue.
Twenty Years, Two Hundred and Forty Months, Seven Thousand Days, and Three Hundred Days. Since we started chasing Leukemia.
Blog Archive
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2014
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June
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- Slowly Sneaking Out and About
- Great Crow Cacophony
- Waves of Pain When a Child is Gone
- Multiple Uses for Weird Things in Our lives.
- Childhood Cancer...... Rare? Depends on your pers...
- Hoping our Lasts.... stick this time.
- One less Portrait of Dorian Gray is in the upstair...
- Lots Out there.
- oH mY gODDDDDD Good News
- Shifting Focus
- Just Give Me the Answer!!!!!
- To Vaccinate or Not To Vaccinate... WE have the lu...
- Music is back.
- Fault is in our Star? or how did it come to this....
- Family and Friends can only stand it so long.
- When they die, are they really gone?
- World Cup is Like Childhood Cancer
- Life and Death keeps happening.
- Lulu Update
- Hoping for Good Results Tomorrow.
- Sometimes things just don't change but then that i...
- We all know the Waiting and Not knowing is the worst.
- Sometimes it only takes ONE
- Hoping Status Quo is a good thing...
- No News, Nothing to Report on Lulu....
- News is trickling out, slowly..... Not much to say...
- Only positive news about Lulu....
- Hope and then....
- Ups and hopefully no downs.
- So this is how it goes...One thing leads to anothe...
- Quiet... sometimes it can be good?
- A bit of information.... heavy duty waiting....
- Bit More Progress.... Information from Natalie, w...
- I'm Stuck....
- Lulu
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June
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