Weird that I just read a blog from dear, fellow-fibro, Josh Mogren titled Why Me? It's weird because I was just talking about that statement to someone in regards to when I got the news that my daughter was confirmed to have cystic fibrosis. Many people I know would have said "Why me?" during those dark times. It's a legit question for many but I can honestly say that that one did not come up during my dark, gloomy days of dealing with the horrific news, nor has it ever come up.
I suppose it's because I'm such a realist. I mean I always knew that when my hubby and I decided to have kids the chance of having a child born with an ailment was placed in the deck of cards. Which card we'd get we didn't know, but I knew we could get one we didn't want...and of course that's exactly what happened in regards to my baby being born with a defective CFTR gene.
But look at all the other cards that came with that deck...we also got dealt cards of a beauty, intelligence, sassiness, lover of life and so much more. Fast forward 3-1/2 years and I gave birth to our gorgeous son who didn't get dealt the card of CF. No he got the card of Sensory Neural Hearing Loss and along with that card came cards of handsomeness, comedian, creativeness and more.
I also think that I don't ask that question because I know the answer. If I were to ask "Why did I have a child with CF? Why me?", well I know why because I know how. I know the science behind it. I know exactly what it takes to have a child with this disease. I know about genes and the mutations of them and I know that both parents have to be a carrier of one faulty gene and so forth. You see I really am a realist. I wouldn't ask "Why me?" in the form of expecting an answer other than the scientific backing of it. And when I ask "Why not me?", it's not that I wanted to have kids with CF or hearing loss it's just that I understand and know the answer to the "Why me?" question.
Now I will tell you a question I did ask; "How am I going to deal with this?" The first three years of learning that Andrea had CF were the toughest. I didn't know how to deal with it. You see we knew about David's hearing loss first. I was trying to deal with that news when 6-months later we get the other news. And here's the first question I asked when we got the CF news..."Why couldn't it just be her hearing?"
That question shook me to the core. I realized how quickly ones perspective can change. I was so sad that my beautiful son would not be able to hear well and possibly go deaf. I cried and sobbed over that. Then we get the CF news and BAM—a huge change in my perspective. Don't get me wrong, it's not like I was okay with David's hearing loss, it's just that if one had to pick between the two...well let's put it this way, hearing loss is not fatal.
Ironically I find myself comparing a lot of things to others and being grateful of the many things we do not have. That's how I answer the "How am I going to deal with this?" question. The answer is: you just have to! And I know this because in the long run it could be worse. Take some other diseases for example; Tay Sachs—it's a horrible genetic disease. Children born with TS rarely make it past 4-5 years of age. My little cyster is 16 which means I've gotten the joy of having her 10+ years longer than a parent who has a child with TS.
I'll never forget the words my husband uttered to me when I asked him how he handled the CF news so much better than me. Sure, he cried and was very sad about the news but he moved on leaving the anger and sadness behind a lot quicker than I did. He replied, "At this very moment someone is kissing their child goodbye for the very last time and we're not, so I'm happy we're not." Those words were powerful and so true. I just hope they hold to be true for many, many, more years to come...say 70-80 more years to be exact! In fact if anyone is going to kiss someone goodbye for the last time it shall be my kids kissing their parents goodbye after we've lived a long, healthy life watching our kiddos lead a long healthy life too! Why not, right?
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