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Sometimes life is a crap shoot

Challenge No. 49 - Debbe's Pick - ROLLING THE DICE


My stream of thoughts on this topic: Rolling the dice, Shooting craps, Crap shoot, Life is a crap shoot....


I know, I know, life is what you make it, but for some they have no choice but to rely on others for everything. I am debating how much to put out here, but I have a feeling it will just pour out of me once I begin. . . most of these challenges really make me dig deep inside.


This is my youngest daughter. The dice of life rolled her an unfair deal. I am her advocate because she cannot speak for herself.


She was born with an abnormal No. 2 chromosome. It is a paracentric inversion between bands Q13 and Q23. That portion of the chromosome became detached, flipped upside down, and reattached. In that process tiny particles were lost. Those lost particles are what makes her the wonderful person she is.


She took her first steps at age 4 with the aid of a reverse walker. She struggled with orthotics and legs braces for years. She used a wheelchair when her legs would not allow her to go any further. Doctors said that she would never walk, but we proved them wrong.


Doctors also said she would never talk, but she does have a small, limited vocabulary. For things she has no words for, she points to pictures and/or icons. But she has Keratoconus and is losing her vision. She is already blind in one eye and has limited vision in the other. She is legally blind. She requires a cornea transplant. We have tried twice and both have failed. It is hard to imagine going through another attempt, but how can we not if it would give her better vision?


With all of her challenges in life it is truly a crappy deal that she has Keratoconus. Keratoconus makes the cornea more football shaped than the normal basketball shape. As the cornea becomes stretched into the cone shape it becomes thinner until it bursts. Fluid leaks out. Eventually the fluid is reabsorbed leaving a scar across the cornea. The scar on her left eye is directly across the cornea leaving that eye blind. The scar on the right eye is slightly off center so she has to look around the scar to be able to see.


Interesting facts about our girl:


1. she does not process information like we do

2. she does not understand concepts

3. at age 26 she still loves her baby-doll

4. she is obsessive compulsive

5. she does not perspire and is prone to heat stroke in the summertime if not monitored

6. she wins medals at Special Olympics Bocce Ball and Special Olympics Bowling

7. she loves her day program where she can socialize with her friends

8. she loves going to Starbuck's for a Passion Tea Lemonade

9. she loves to play cards - UNO - and will cheat to win. her cards are 4x the normal playing card size so she can see the numbers

10. she likes to vacuum

11. she likes to snap green beans

12. she loves going to Noah's Bagels for breakfast with her Dad on Saturday mornings.

13. she cannot communicate if she is feeling ill - it is a guessing game

14. she has never, ever said her own name. she refers to herself as "me"

15. she thinks everyone in the world is just like her


Even after 26 years I would like to roll the dice again for her, wanting a better outcome. She lives in her own home with 24/7 care. She requires help bathing, getting dressed, personal care, cooking, shopping, laundry, household chores, and everyday living. She has grown more independent since moving into her house with her own staff of wonderful women. She loves them. She is a happy girl.


I think this must be a summary of the book I am going to write.


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Taken on May 21, 2012