Sunday, March 25, 2012

Intangible Statistics

Two days from now is my son's 5 year kidney transplant anniversary. Five years ago a friend donated a kidney to him at the urging of her then, 13-year-old daughter. 

Five years. 

Without even looking to Google U to tell me the statistics I can tell you that there are studies out there that I've read that tell me his chances for the kidney lasting longer go up because it is from a living donor. I can tell you that I read somewhere the 5 year date from transplant increases the odds that he will keep the kidney longer, than say, my daughter who is 2 years post transplant. When she hits 5 years, we'll have the same sigh of relief we're having for him right now. 

Statistics; I've lived by them the last 10 years. When our daughter was born and she and her brother were diagnosed with a rare form of a common disease (polycystic kidney disease) and a vision disorer, I read 50% of the babies survive (now the number is 70%) birth, the 1st year is touch and go for many but after a year the chances are good they will survive to age 10, where a high number of them will need either a transplant or to go on dialysis. 

Unknown to us at the time, there was a 1 in 4 chance we would have a child affected by this rare, recessive syndrome; 25% chance for each pregnancy. There was a 75% chance each pregancy would result in a child without the syndrome. Oh how the Internet has made the statistics - both good and bad - accessible when really I should never look. 

What was my point exactly for knowing some of those statistics? To prepare me? There was and still is nothing to prepare me for my kids' suffering or for the experience our family has endured. And reading all the statistics on every facet of their conditions will not change that. 

You know why? The studies rarely focus on the good. They don't tell you a percentage of kids who are thriving; mine are. They won't tell you that kidney function has impacted my son to lead him to join his first real team sport at age 13 or that my daughter has mastered freestyle swimming. They won't tell you that our family survived as a family unit from one kid's near death health, suicidal tendencies or the 2nd kidney transplant with one child within a few months of those experiences with the other. 

The studies never start off with, "Remember, there are a lot of variables and intangibles you could experience, be sure to look for those, too." 


Julia Roberts blogs at Kidneys and Eyes and is Co-founder of Support for Special Needs, a social network for special needs families and she started a product line of fun stuff at Slice of Crazy Pie in support of special needs.