So today marks two years without my stomach. I had a couple of things I thought about writing about, but then changed my mind to give you a different perspective on my journey. I asked my wife, Edie, to give you a different viewpoint into the last two years. A different look at the same journey by those whose lives this also affected.
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Hi everyone!
Roger has asked me on the eve of his two year anniversary
of having his stomach removed to write from my point of view about the
experience. So, here I am.
When we first found out that Roger had the CDH1 gene
mutation, he was struggling with the decision of what to do. He asked me after a couple days, “What would
you do?” I told him that I thought it
was a ‘no brainier’, get the surgery done so that you’re here for your kids and
grandkids. I’m not sure when he finally decided to go through with the
operation or if what I said had any impact, but he did.
Everything seemed to be run of the mill, or as run of the
mill as prepping for having your stomach removed can be. Then things turned
south, it was about two days after the surgery…things were anything but run of
the mill. I never regretted my ‘no
brainer’ comment so much…I felt like I should have just kept my mouth shut.
Complication after complication, the first month we were in the hospital more
than we were home.
His sister Melanie, was such an inspiration for him. I’m
glad they stayed in such close contact, I however felt helpless, guilty and in
the way. There was nothing I could do to
help him, I couldn’t fix him. I am a
wife and mother, I am supposed to fix things I am supposed to make everything
better. That’s my job, that’s what I
do. Reading his blogs was out of the
question…I’ve only read maybe three of them.
I start crying every time.
Every time he gets sick I feel guilty, every time he
dumps I feel guilty, every time he eats too much I feel like it’s my
fault. He is an adult…an amazing
man…strong, gentle, loyal to a fault, and forgiving I hate to see him go
through what he goes through. I have to
turn away so I don’t cry…
When you love someone as much as I love Roger, which is
only a fraction of what he feels for me, seeing their pain…their struggle, you
want to make it better, you want to make it go away. Knowing that what I feel is only a portion of
what he is going through…really doesn’t help.
I try to stand strong, I try to always be there for
him. It doesn’t ever feel like it’s
enough. I listen when he’s frustrated, I
let him vent. I wish there was more, so much more I could do for him.
“Eat slower”, “not so much”, “maybe you’ve had
enough”….the best and I’m sure the one he’s most sick of hearing “Chew, chew,
chew Daddy man, chew, chew, chew.” These
are the things I tell when I don’t know what to say.
The experience did provide me with valuable
information: When someone you love is
going to be in the hospital for an extended period have a lap blanket and
pillow handy always. No matter what the
procedure or how short it’s going to be always pack snacks and some ‘light’
reading. Pack chargers and keep your
electronics close…you never know when you might be playing a round or fifteen
of Alpha Betty. Family updates are a
must. A one hour procedure will be at
least two if not more. Half hour
procedures do not exist. Cheesecake for
breakfast is ok. For me having a yoga
mat wherever I went was huge...the patient waiting room with the ‘relaxation’
or ‘meditation’ station on was a must.
That’s it. I know
Roger always uses a song lyric in his blogs…the song/phrase I cling to is ”Your
life’s not falling apart it’s falling into place” Casting Crowns ‘Just be Held’
