Disclaimer: Nana Fitzpatrick should not read this. Thanks!

 

Last Thursday, I called God an A**hole. I meant it. And I
said it for others to hear.

 

Now I’ve thought it a million times over- maybe a billion-
but I’ve never let it leave my head or better yet- my mouth.  I didn’t say it for a reaction, I said it
cause it’s true. On that rainy and cold Thursday night with poor visibility, I
was on my way to a fundraiser for another dying person. The timing just seemed
right.  And I figured if God was really that
mad at me for my words- or constant thoughts, he could make it look like an
accident-stir my car into a pole and have it burst into flames. He didn’t.  And now this post is my insurance policy of
sorts. If I call him out (God that is)- maybe he won’t retaliate. But at the
same time- he’s already done his worst. He has my Teddy- and I don’t. 1 point
God , 0 points Fish.

 

Now, I think of all those people that have a right to call
him a a**hole- and there are several- seventeen menkes families this year in fact.
In some cases, they have lost more than one son to this disease. Years ago they
didn’t know why their sons were dying- they didn’t know they were gene carrying
women. So they buried one son after another. But even now, gene carrying women
knowingly have more children the natural way, taking their chances with the 50/50
odds… knowing that if they are on the losing side of that coin, they will
bury another child. They leave it in “God’s hands.” Forgive me for saying this
(but in a blasphemous way, I’m on a roll)- but God screwed you once- you’re
going to give him a chance to screw you again?  You are a much much better person than me- truly. And I admire your strength- I just don't have it.  You know what they say, “Fool me
once shame on you, fool me twice, shame on me.” I’m more of a believer in “Fool
me once shame on you. Fool me twice…don’t worry mother f*cker, you won’t get
the chance.” I guess you could say I’m back in my angry mode.

 

If you plotted my daily emotions on a chart- you would find
no pattern, no consistency, no significant results…just a polka dot piece of
paper. I’m all over the place. My mom stills asks me on bad days, “what’s
wrong?” And if my looks could have actions- mine wouldn’t be very nice.  She knows what’s wrong- it just is the thing
to say I suppose. I feel bad only posting when I’m generally speaking in a bad
place- but that’s when I need to get it off my chest. And currently, I’m in a
terrible place. This time last year- exactly two days from now- I was getting
the news that would change my life forever. In fact, this day last year- I was
in the hospital with Teddy, admitted for an “ear infection” and fighting
medical professions- and general life skeptics to diagnose my son.  And this is what I have to say to all of you-
you’re all a**holes too. You’re a**holes for making me feel crazy, you’re a**holes
for ignoring me, you’re a**holes for missing this diagnosis and as a result
taking years off of Teddy’s life. You screwed him and everyone that loved him.  (If you want to turn this into a drinking
game, take a shot every time I say “a**hole” cause I’m just warming up).

 

Dear pediatric GI specialist – you’re the biggest a**hole.
Thanks for telling me two days before my son was diagnosed that “he will grow
out of this,” and “..if I really thought something was wrong, you would be at
children’s.” And thank you for never acknowledging my son’s diagnosis -even
though I KNOW you were informed. You are the ONLY doctor that didn’t apologize…
the only one.  You’ve earned you're a**hole
crown. Ps- thanks for the endoscopy…glad I put Teddy through that.

 

Dear Arlington, Virginia pediatric group – you’re the second
biggest group of a**holes…all of you. 
When you clearly have a child with health problems, that child should
see the SAME doctor every time if at all possible. Instead, you made me explain
what was going on to every single doctor in your large practice, multiple
times. Oh- and I only saw my pediatrician, the one I picked, once…that means
one time. And I understand that you have never seen menkes…but that’s not an
excuse. You also took years off of Teddy’s life. Congrats on diagnosing the
easy stuff- you’ve mastered that. But everything else, you suck at.

 

Dear pediatric immunologist. Really…shame on you. When I was
diagnosed at Children’s hospital in Virginia the doctors there couldn’t believe
Teddy was in your care…because in their opinion- you should have caught this.
Oh, and that infusion you were about to do- yea, you were really wrong. Oh and
you’re an a**hole.

 

Dear occupational therapist that we only saw once….while you
are one of the only healthcare professionals to get it right- there is an art
to words and delivery (which I’ve clearly lost) and you have none of…you are
also an a**hole. You evaluated my son for less than 15 minutes and told me “he
may walk one day.” The assumption here was that he probably wouldn’t. You were
right, he didn’t walk- he f*cking flew like the superhero he was…you clearly
missed that.

 

Dear pediatric skin and hair resident…I’ve changed my mind- you
are tied for the biggest a**hole. Congrats. I know for a fact you were told to
stay away from us until our scheduled 4pm meeting, yet you strutted into the room
prior to 4pm with your poor hygiene and unibrow and nonchalantly delivered the
news that Teddy had menkes …and then strutted out. And yes, I made sure the
head of that hospital knew what you did. I hope you got fired. I hope you are
hiding in some lab, far far away from patients and analyzing stool specimens
because that’s what you deserve you piece of crap. Get a wax.

 

Dear Children’s Hospital. You’re a**holes too. You’re
welcome to read past posts for evidence, but you know what you did. For all of
your praise and endowment- you sure have some things to work on. First off-
reserve single rooms for terminally ill patients. They should get priority.
Second- you’re a children’s hospital….which means parents are there too. Try
feeding us; that would be nice.  What’s
that? Oh-my son on a feeding tube just called and he wants chicken fingers for
his pregnant mom so that she doesn’t starve to death – especially since she’s
too scared to even put me down due to the man-child psycho who is sharing our
room.  And one final thing…when I made it
clear that I wasn’t operating on my child with a life expectancy of two weeks
to two years- you should try listening. I believe in the quality of life, you need to respect that.

 

Dear Dr. Vesel, Lisa C, Dr. B Lanpher, Randy, and Dr. Kamat:
 You are not a**holes- not at all.
Instead, when I look back at the past year- the worst possible 365 days
imaginable, I think of what an incredible job you did. How incredibly
comforting, caring, thoughtful, and kind you were. How I trusted you with the
love of my life and you didn’t let me down- you didn’t let him down. Now a
lesson for healthcare professionals…it’s not the news that will kill me, it’s
your delivery. Dr. Lanpher diagnosed Teddy and cleaned up the mess from
sh*thead above. He was patient and truly sorry for the news he was delivering-
it was all over his face. He would have sat there for days if that’s what I
needed, answering all of my questions. 
Dr. Kamat and Randy, your tears were sincere and will not be forgotten.
Dr. Vesel, you told me my son would die within days. You told me I had to say
goodbye to the love of my life. You let me question you- basically accuse you
of trying to kill my son.  You invited my
challenges, you invited my questions, you invited my anger because you wanted
me to question you before he died, not after. You are an incredible doctor.
Incredible. You have the toughest job in the world- you tell parents to say
goodbye to their children when it’s time- and you make sure they leave this
world surrounded by love- and most importantly, pain free.  Lisa, I love you. And my final note to
healthcare providers, “sorry” goes a long way. Not enough for forgiveness in
this case, but enough to take the edge off.

 

Now back to you God. You took Teddy and I will never forgive
you. I will never trust you again- and you have done nothing to restore my
faith- you’ve only driven me away. If you take my precious Royce, I will
promptly be joining you. I will bust down your pearly gates and you will have
no choice but to deal with me. And I’m an a**hole too.

 

I love you to the moon and back Teddy Fish, I will never let
anyone forget you.

(And this is the only time it’s okay to swear….do what I
say, no what I do).