Keeping it Real

I haven't blogged since 2013.  Maybe because I've been spending much of my time since then treading water and keeping my head just above water. 

I'm about to keep it as real as you've ever seen.  I'm doing this because I have a lot to get off my chest.  Then you won't be hearing any more about it.  I don't trust my feelings with people, but I've been prompted for months to write this, so I figure there must be a reason.

Simon turned 11 in June.  We still keep in touch with many of his birthday month mates and it is always fun to see how they are growing and progressing.  This year was different.  Just weeks prior, one of Simon's very favorite doctor's suggested we fill out a POLST form and strongly encouraged a DNR.  The reasons were very reasonable and very pragmatic; but I just couldn't have the conversation and that form sits in a pile on my bureau upside down and hasn't moved since.  A birth month friend said how our kids would be planning college soon; I was just asked to plan my son's death.  I smiled and expressed all those fun, "I can't believe how big they are" joys, but I was aching inside with every forced positive interaction.  I'm supposed to celebrate these miraculous 11 years right?  Even though we all know it has all been borrowed time, I'm not supposed to think about that, talk about it or acknowledge it.  In fact most days, I think about it in a very matter a fact way.  I make plans in my head for when the day comes without truly connecting to it. 

Each time I see a Trisomy child pass, I offer my condolences and ache for the parents, yes; but really my main thought is, "I wonder when it's my turn.  I wonder when these dozens of pictures I take daily and these fun videos are all I have left.  Each night I smell Simon's cheek.  It smells like infected mucous, but its his smell and its beautiful and perfect and I take in that smell every night I put him to bed and just hope I soaked in enough to last me if that night is his last night with me.  Each night I shed quiet tears and pray to him and to my Heavenly Father to please not leave me tonight.  Every single night a part of me prays this is not the last time I smell him and kiss him.  Life changes in an instant and that is always how Simon does it.  We have come close to losing him more times that I've expressed. 

Shocking huh?  I'm the resident make everyone feel good and uplift them person.  I don't need pep talks, I was born a pep talk.  I smile and hope others don't see the haunting in my eyes as every day I live my life with a film of worry and a whirlwind of thoughts, hoping I'm doing everything right everyday for him and my other boys.   I don't think people realize how much I feel like I'm not allowed to have these feelings.  I handle everything so well.  I'm so happy, so positive; how could I literally be worried about my son's life every single day and you have no idea?  Because I don't let you know.  That's how I like it, but then I get irritated when you say you can relate when clearly you have no idea.  It is an effort to just live daily life as normally as possible.  All those activities we smile through took a lot of effort and logistics to plan and they are all sprinkled with fear and apprehension.  I force myself from this cocoon every single day.

I recently was told how lucky I was to work and have that respite from Simon.  What they didn't seem to realize is I work because I have to.  While its good for me and Simon to have time away from each other, that is not the choice I prefer.  We are lucky to have a great support system that allows me to work, but I am always a little afraid to be that far from him too.  Currently, I am trying to coordinate a stool sample and how to get it to the lab from an hour away.  A couple of months ago, coordinated daily bowel x-rays, it's always something. This makes me rely on a lot of people.  I have to juggle multiple doctor's appointments a month, unless I choose to skip a month for sanity's sake.  I have to battle insurance companies and medical facilities on my breaks and lunches.  I have to get in touch with doctors to get orders for one worry or another.  I'm always trying to stay one step ahead of whatever new unexplainable thing is going to change our lives forever.  So yeah, I got it easy.  Thanks for reminding me.

I don't need uplifting words.  I don't need anyone telling me how they completely understand or how they or their friend has it so much worse.  I just wanted to get it out there why I'm hard to talk to and why I'm lonely.  I don't trust 500 of my closest friends with my emotions.  Some can relate.  Some think they can, but many can't and that makes me very difficult to talk to.   I hold my emotions very close, so it gives the impression I don't have any.  I think they are intimate and not for everyone. 

So there you have it, and we won't speak of it again.  If I seem guarded, it's because I am.  If I seem angry, I am.  Maybe, a little, this helped someone.  Maybe, a little, you understand me more.  Maybe, a little, you won't judge people and their trials based on how you would handle it, because you have no clue.