A post from Dad on his day

Sunday, June 17, 2012

I was very surprised to receive the following post at 10pm last night with email subject line "can i do a guest prologue blog post?"  Of course Matt.  (And how did you type this out on the iphone?!)

I'm just warning you, this may be a tear-jerker. 

"it's simply not fair."
"why is this happening to us?"

These are two phrases I am constantly repeating to myself.  The fact is, it isn't fair, and I don't know why we are suffering through this.   I don't know why it is that any family needs to suffer through such an awful experience.  I think the 'why' is something that may not be answered for years to come if ever at all.  However the fact remains that Ari has a disease many children each year are diagnosed with and he needs a strong and prolonged treatment to beat it and get back to life as we knew it.   The odds that this was going to happen to us were minuscule, but, it happened and now we need to deal with it aggressively.

I love Boston for many reasons, and although i knew the healthcare here was some of the best in the country and arguably the world, I was hoping to not experience it as we have.  I am grateful that we are in arguably the best hospital for Ari's specific condition and the team of oncologists, nurses etc are top notch.  Sidebar, I always loathed the fact that our healthcare premiums have been so high for so long but at the end of the day it's a policy I would prefer to pay into than receive benefits from, however the time has sadly come for those premiums to be put to work. One of the oncologists on our team estimated the cost of care for Ari over the course of two years to be in the seven-figure range and fortunately for us virtually all of those costs will be paid by our insurer ( my apologies to you healthy folk out there).  Anyhow I digress.  Luckily we live a mile away from the hospital, my family is a stone's throw away and JulieSue's family is a short plane ride away.  Our families have to this point and will continue to be critical in helping Ari through this process.

Ari is barely 20 months old and in no meaningful way capable of understanding what is happening to and around him and clearly unable to explain to us how he feels other than very rudimentary cues that we can pick up on by virtue of being mom and dad.  On the one hand it's a gift that he's too young to understand why he has drugs pumped into him practically 24-7, on the other hand I wish I could explain to him the reason why we can't go home or visit the park, or play in the pool and go to music class.  Ari is such an exceptional and active kid that watching him lay in the hospital bed compounds our agony.  I would give anything to trade places with him as I know JulieSue or any of our families would.

I've certainly never been a religious/observant person but to some degree i believe in the power of prayer and faith, perhaps out of routine, maybe out of desperation or obligation even, but now I find myself walking a tightrope on faith in general.  On the one hand, i am asking for help from above while at the same time wondering why something like this would ever be allowed to happen to my son.   He's a baby, what could he have possibly done to deserve this cruel fate?  This gets back to the whole 'why' thing which can drive a person mad and i am finding to be less and less  fruitful, though i imagine i will harken back to it repeatedly.  Cathartic as this is to vent my feelings, i want to also put things in perspective since we don't have to wander far from our room to see how badly many other families are suffering. There's a child younger than Ari that's been here 6 months already.  A boy Ari's age with sickle cell just had his spleen removed.   There are kids with a broad range of illnesses and I'm sure each one of these families find themselves asking "why us?".   Hopefully there will be a day when no family will need to ask that question to themselves, EVER.

In the last decade the two happiest moments in my life were marrying JulieSue and watching Ari be born, cliched though it may sound.  And with specific regard to Ari, every day with him is a gift that keeps giving.  There's nothing quite as amazing as him waving to me from the window when I leave for work in the morning, or us chasing one another around the living room, or playing in the park.  And oh how i bemoaned the fact that he'd want to walk outside just to sit there and watch the garage door open and shut, for hours that would amuse him much to my chagrin.  Now  I'd give anything to just sit there with him on my lap watching that darn door open and close.   None of us has a crystal ball, and I'm really scared of what the end result of all of this will be, but extremely hopeful that 5 years from now we will look back upon this as a trying time in our lives and a significant battle that Ari won and won decisively.

Daddy loves you.


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