Separate but parallel universe

May 30, 2019 

I have often described a feeling of being in a separate, but sort of occasionally parallel world.  Having a severely disabled child, while also raising two typical children placed me in a strange position of belonging to one world, in a false state of "being like every one else ness" that you feel at a kids soccer game, or watching a band performance.  When Daniel was not with me, I just melted into the crowd.  

When Daniel was with me, because I never wanted to leave him out of anything, and in the early years (prior to the blessings of medicaid expansion) I did not have any nursing help.  

While navigating my own personal trauma, depression, PTSD and stinky fibromyalgia, I was also keeping a brave face on.  Letting the world think I had it all together.  And boy do people think I am some sort of a super hero.  The compliments flood, because I honest think that people don't know what to say, except "you are an awesome mom", "you are so strong", "God only gives you what you can handle", and it goes on and on. 

But the reality is, when push comes to shove, people don't seem to want to be around me.  For 5 years, Thomas (in his spectacular musically talented way) was in the the Marching Band.  I was so excited to be a band mom.  To be involved, and on committees and do stuff.  Only the real news was, I couldn't commit to anything.  Never knowing if I had nursing care, or if Daniel was going to be well enough, left me in a lurch.  So I just took a seat on the side line, and watched everyone else be pit parents, sell merchandise, run bake sales, laugh and talk and make friends.   While I sat, most of the time with just Daniel and I, in our little wheelchair accessible bubble. 

A sprinkling of parents would certainly be friendly, no one is mean, but just like in the rest of the reality of life, people mostly look away from a caregiver and her son.  They are too focused on themselves and their children, and their jobs as involved and supportive parents. 

I never expect anything from anyone, I let it go a very long time ago.  And I no longer have even a single friend that I can comfortably call and say, hey... want to go for a coffee?   

I did have one friend, who had a son in band, he had mild special needs, but she was SO nice to me.  We kept talking about meeting up for coffee.  But then she had to move to Pennsylvania.  Now I regret that we never connected at Starbucks.

I don't want people to pity me, but I just gave up after awhile.  The isolation while in a crowd thing? Is a real thing.  Or maybe I just have incredibly bad dissociative disorder.  

I am 52 years old.  I have been reinventing myself, every day, since the day I found out that my child would need me 24 hours a day.   PMG is a rare condition.  There was no outline for what would happen, there still isn't.  Not that anyone has one really. 

It surely would have been nice, to have had some close friends over the 5 years that Thomas was in band.  I have that sprinkling of a few, who when I run into them, they are absolutely genuine and wonderful.  For the most part, for every thing, unless I had John by my side, I was floating in that parallel dissociative separation called Special Needs Mom. 

Carry on..