This past weekend me and my family attended a walk for Nephcure at FDR park in Yorktown Heights, NY. The reason we attended the walk was because we had originally thought my Son had FSGS. That is a disease where there is scarring in the kidney's. I won't get into too much detail because the bottom line is he has been re-diagnosed with Dent's Disease. This too affects the kidneys but is a rare genetic disease. It would appear that I am a carrier. Great. Just one more thing my kid can tell the psychiatrist about when he's older. It really isn't my fault though - it comes from my mothers side of the family and I'm not sure if you can point a finger at any one person. Long story short, I believe it is a better diagnosis.
We did the walk anyway because it just didn't feel right bailing the cause just because we have a different diagnosis. I believe we had a moral obligation to stick with it. It's not like we took black magic marker...you know the kind, permanent with the real cool smell...and crossed out Nephcure and wrote Dents. That would have been in poor taste. Actually the thought crossed my mind, briefly. Besides, Dents Disease doesn't have an organization to call their own, at least that I know of. I could, if I had the time and energy, start my own, but there would only be like 3 members - hence the rare genetic disease thingy.
It was a beautiful fall day and the turnout for the walk was great. They had music, food, airbrush tattoo's for the kiddies (to prepare them for the real thing when they get older) and grown-ups if they felt the need. The biggest thrill was, Ronald McDonald was there. OMG!!!! that means Oh MY GOD for all you old timers. I couldn't believe it - pinch me will you? He managed to get his madeup mug into every photo and he was working that crowd like the true professional he is. His makeup was flawless and that bright, flaming red hair - pinch me again. My cousin, Bryan's son, managed to get Ronald or Donald as he called him, all ticked off. Not pretty for a clown, let me tell you. He decided to walk right up to that oh-so-talented entertainer and ask him what kinds of low sodium items will McDonalds be featuring on their menu this year. Ronald mumbled and moved on the the smaller kids who couldn't quite form sentences yet. Then in my families usual fashion... we tend to do things to embarrass ourselves, my daughter dressed up in this silly bear costume (i couldn't get my mind off of what kinds of germs are festering inside that costume) and laid down on the ground so Reily, my cousins son, could pretend like he shot the bear on a hunting expedition. He posed with a stick as his rifle and one foot firmly placed on the bears abdomin - thank GOD it wasn't a walk for Peta!!! We would have been stoned. Everyone was looking at us, wondering, I bet, why we couldn't show just a little decorum..... had we no shame?? Nope, none. None at all.
I was happy to be part of this walk and I was proud of the people that I walked with with. I didn't think it possible - but I loved my family even more. As strange as it might sound, I felt guilty. FSGS is horrible. Horrible for the people/children it affects, horrible for the parents who live with the worry everyday. I caught a brief glimpse of that worry and heartache for myself and it took it's toll on me for that period of time we thought our son had that disease. Now, I realize compared to others, it was just a blink of an eye. I am relieved, relieved to the point that I could exhale for the first time and now can't stop. I also feel great remorse that I get to feel relieved and others do not... My son will get treatment for his disease and I believe, I have to believe, the prognosis is very good for him. My son, with the smile as easy as a summer day, his beautiful blue laughing eyes, golden hair and incredible child like energy that causes him to jump out of bed and just live to play as children should - will do well, will live long and for this I am grateful. I look at him and just want to hold him, to hold on to this moment and remember what we almost went through and be so grateful - I need to be grateful every single day for the rest of my life. I need to look at him and know, nothing is so terrible as long as my children are well. My newly found gray hair will stay and my heart still aches when I let my mind go to that place where I remember what we went through, what it felt like, but it aches even more for those still living and agonizing over their diagnosis, the treatments, the mornings their child is unable to jump out of bed to swallow up the day - it will continue to ache.
To my family. Thank you for checking in, thanks for asking, thank you for the kind words, prayers and thoughts - they helped, they did as is evident by the new diagnosis. I am overwhelmed by the love that is my family.
Love Always,
Mary
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