ok, so im pretty sure ive never written a blog post when I was slightly just a teeny bit tipsy... but theres a first for everything, right? ok... im on my second glass of wine, but its been an emotional day and I feel like alcohol just affects you more when youre already emotional. its like your regular barriers of whats appropriate to talk about just kinda fade away and you can talk about whatever uncomfortable or awkward thing you feel like talking about and you don't care who feels bad about it... apparently, im a jerk drunk. (im not really drunk... maybe a tiny teeny bit)
so if any of you are my facebook friends, then you may have noticed that the candle profile picture is back, and when its back it means theres been another death in our duchenne family. and although I may have never physically met this family, there is still such a connection... you already have such a deep connection. I don't think I know any other person in my 'real life' that has a child with a terminal illness... and knowing something like that definitely connects you to someone else that knows something as terrible as this. it is an awful thing to know. I truly do not wish it on anyone... back to the point, a 10 year old boy died today due to respiratory failure because he had the flu. the flu.
his poor little lungs weren't strong enough to handle the flu. that is so scary. it makes me question everything. I want my son to enjoy everything he can in the time that he has here, but at the same time, I am now questioning my decision to let him go to the Christmas parade last weekend in the cold, and letting him play outside in the snow today... just 20 minutes outside and he was exhausted. all that gear to keep him warm made his muscles work twice as hard just to move, if he fell down he couldn't even get up on his own...
so whats more important? letting him have as much fun as possible while he can, even though it might be shortening his time in some way, or protecting him to the max to keep him here as long as possible? its such a tight rope walk... you need to stay balanced... you protect a little too much, you feel bad and need to correct by leaning toward the other side, let him do something that you maybe regret later, correct again by keeping him from something else. I hate this. I hate having to over analyze everything I do, everything I let him do...
I realize Im rambling... it happens when im upset. I try really hard to stay upbeat, but sad news like the news we heard today just makes it so hard. 10 years is far too short a life to live... im sure his mother and father are grateful for every moment of it, but im sure they also feel cheated... shortchanged. its not fair. not that I wish I could trade situations with anyone, I would never trade one single moment ive had with finny, but I would do absolutely anything else to change our situation. I would do anything to make him healthy.
hug your kids. and even if they've been absolutely crazy on this second snow day and youre ready to pull your hair out and send them back to school, give them a little extra love that 10 year old Nicholas Williams' parents cant give their son tonight...
Nicholas...
sorry for the tipsy, depresso rant... just needs to happen sometimes. what else is the internet for? ;)
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