I am generally extremely optimistic about everything relating to Jeremy. Needs heart surgery? Cool, we'll find the best doc, best hospital and get it done. Can't gain weight? It's ok he'll do so in his own time. Lab work again? Well good thing I brought some snacks for him, and my phone is charged because this could be either a 10 minute ordeal or a two hour test of my patience with the medical facility.
However, my emotions can range from the glass is half full to "Holy shit what if this was us, how would I live through this?" Because I like to live in this world where every thing is coming up roses, I try to stay away from truly saddening stories, they just make me so sad and I don't like to be in that place; physically and emotionally. I try not to Google any little thing Jeremy has (like this week its been a bloody nose, which the rational side of me says it's from his ever-running nose and numerous wipes throughout the day... but the irrational side says "Holy crap, if I bring this up on Friday it could possible lead to a battery of tests and what if its..." Googling almost always leads to some rare cancer or disease... (seriously, I Googled my sciatica pain once and according to WebMD my kidneys were about to explode and I should most definitely be at the ER).
I recently started following little Annie on Facebook. She was denied a heart transplant, there are a range of stories that depict many scenarios why. I have read that a person with Down syndrome does not qualify for any kind of transplant because of the quality of life factor. I have also read that people with Down syndrome can qualify for transplants and it is totally dependent on the overall medical situation. Who really knows? I think it may be on a case-by-case basis. What I do know is little Annie's story is so sad, and the pictures posted tugged at my heart strings and made those feelings fall out of my eyes, she was literally dying one still frame at a time.
Last week another baby, Ryder also passed away from a disease that, in hindsight, can be prevented through vaccinations. (The unvax of Ryder was reportedly not the fault of his parents, they did not know the B-strain vax was available as he was vax'd for the C-strain; simply it appears they were not informed).
Simply put, I constantly struggle with the very real world I now live in; one where my child could possibly become very sick, one where he may be determined to be undeserving of a second chance at life because of his genetic make-up. I realize some folks read this and think "really crazy person? Anytime you can walk outside and be hit by a bus!" I guess its just the odds seem different somehow... greater and not in our favor.
(For the record- I am very pro-vaccinations, I am also very pro-transplants in anyone that qualifies regardless of genetic make-up)