Friday, August 4, 2017

Two Years And Counting Through A Different Set Of Eyes


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’

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