This Story Needs to Have a Happy Ending
My motivation to write this is three-fold. I need to write through my feelings in the vain hope of trying to understand them, I also want my message of support to my best friend and her family to be a hell of a lot more eloquent than a sleepily typed Facebook message. Finally, I want to send this out to the blogosphere in the hopes of gaining more supporters for the Cystic Fibrosis Foundation.
(Just typing out that last sentence reduced me to a blubbering mess. Somehow passing on this bit of news makes it even more real.)
I need to rewind this back a few months to explain...
When Kim told me she was pregnant with she & Steve's second child, I was ecstatic for them. Here are two people I've known more than half of my life - old friends who I can remember camping with in the bush in high school, taking road trips with, visiting during University, tearfully watching get married, and then meeting their beautiful little son, Gordie. As one of many witnesses to their lives I can tell those of you who don't know them that they are pretty damn fabulous people. Family is first with them, and if any two people should get together and write a book about how to be a great parent, it's them.
When Gordie was born, I was stuck in Windsor, two hours away. I wasn't at the hospital the next day, nor did I make it there until the little one had been around for two weeks.
(The guilt from Not Being There has always been in the back of my mind, coupled with the regret that I didn't show the kind of support I should have. I'll always feel like I should have been there right away.)
As always in her generous nature, Kim never held this against me. Or at least she never told me that she did. Even better than that, she asked me to be in the waiting room when it was time to have her second child. This honor is certainly listed among the most important things I've ever done in my life.
But I digress.
Back in April, they received the terrifying news that nobody should ever have to hear: something might be wrong with their baby. An ultrasound had found calcification in the baby's abdomen. Steve's account of this is so haunting and well-written that I wouldn't dream of trying to get into the details. The symptoms pointed to several possibilities, one of which was Cystic Fibrosis. Having gotten the news first on Facebook, I tried to think of something, anything that I could say to my old friends that would bring some hope, some comfort. Little gestures, hugs, words of support - all things they definitely need, but I wished I could do more. That feeling of helplessness is probably going to be a rock on my shoulders for many years...
When Oliver Armand Loney was born, everybody celebrated and cried with joy. We waited for a couple of hours after Steve announced his birth, then washed up to visit the new arrival. I stared down in awe at the tiny baby who just hours before had been a bump in his mommy's tummy, thinking that I'd do anything for him. We all commented on his colour, his chubby cheeks and legs, his dark eyes and hair, and tried to decide if he looked like his big brother or not. Nobody mentioned that he was hooked up to scary-looking monitors or the tubes coming in and out of him as he lay in the NICU.
He was in the Neonatal Intensive Care Unit because of a possible blockage that "possibly would result in surgery". After a lot of praying and waiting, we heard the news that he was physically fine and after some frustrating days, they brought him home.
The news seemed better every day. But lurking in the background was the possibility (a 1 in 4 chance) that Oliver would have CF. Coupled with the pre-natal symptoms, the doctors were fairly certain he was going to have it. Despite this we all hoped a miracle would happen...
Denial is such a useful defense mechanism. I told myself that I'd keep really positive and say lots of prayers and that maybe, just maybe they would have good news to share. Sometimes I really believed that the results would be negative. Despite being haunted by images of the little boy who will call me Auntie Mel (like his brother does) hooked up to machines, I convinced myself that this wouldn't, couldn't happen for real. No way was this beautiful child going to grow up feeling choked and taking dozens of pills a day. No way was he going to have hundreds of doctor's appointments before he starts Kindergarten. No way was my best friend and her wonderful husband going to go through so much pain. No way was this tiny child who looked so healthy going to have a life expectancy of 37 years.
How does a person handle this? How do you face the fact that your child is going to likely have many medical problems? How can any person look into the face of their son or daughter and know you will likely outlive them?
Nothing could possibly be more heartbreaking than this.
And so the only thing I can think of is to put up a link in my blog for the Cystic Fibrosis Foundation (if anybody knows how I can put this on my links in the sidebar with a picture, I'd really appreciate that help) and beg anybody who has the financial means to please, please donate money to the cause.
Denial might be raising its ugly head again, but I honestly believe that some day this terrible disease can be beaten.
It just has to.