caught in the doldrums

The real issue is being trapped here in this room. It drives me nuts. Pickle can keep himself occupied with the cartoons, movies and Playstation this fabulous pediatric hospital offers, but idle reclining is not for me. I was made to bussle and this forced idleness is dragging me down. Could be a touch of mania. This situation always seems to set me off. The boredom, the tedium, the hourly uncertainty of the health of my child … not cool.

“She was a sailor caught in the doldrums, waiting with increasing desperation for the faintest hint of a breeze to fill up the sails and let the journey continue.”

Same song, different room.

I finally got a connection in this hospital room. Interesting discovery. But it’s still a hospital room with the same beige walls and same smell. What is that smell anyways?  I am once again sitting at the foot of another hospital bed, with rails up and green sheets waiting for Pickle to fall asleep to watch for any incoming seizure on another EEG.

I’ve been here since Saturday.  I just don’t know how I got here.

For some reason today, I’ve just been thinking about all the events and decisions that led me to here.   Not the hospital but, being in a hospital room with this child (not biological), while my children are sleeping sound in their beds, being well watched over by a father (not biological).

Did you get that? It’s strange. How did all this responsibility get so shifted around and why?

I’m not trying to present like a martyr or even a victim. That’s not what this is about. It was a vague observation that got stuck just swirling around in my head. Most likely because I’ve had to go through Pickle’s medical history over and over and over again with the doctors and it always ends the same way.

So, now you have full custody of him?”

Yes“, I respond.


People ask me, “Are you sure you want to deal with this for the rest of your life?”

Well what other options are there, dummy? He’s MY son in every sense of the word. His “egg donor” isn’t worth anything, doesn’t have the capacity to care for him and who even knows where she is…who even cares anymore? Ok, in all honesty, I can see in the problems he’s having that what it really amounts to is that she REALLY didn’t have the mental capacity to be a mother. I’m not saying that as an insult. It’s a fact. There was something wrong cognitively with her. Much like there is with Pickle. He can’t connect the dots. She probably couldn’t either. Then his “Dad”? Well, I wouldn’t even know where to begin.

I think it just boils down to selfishness and lack of compassion. Lack of love? I mean isn’t love really the concept of realizing that something other than yourself if real? El Chuba definitely doesn’t get that. And then there’s me. Sure it’s not the ideal situation. Sure, I’d much rather Pickle get to have THAT relationship with at least one of his biological parents. It just seems like a great injustice not to. I’d feel differently if he had been adopted at birth but both of them WERE a part of his life and …. bailed, for lack of a better word.

I never saw myself here, but most Moms whom have children with disabilities don’t. We deal. Roll with it. I almost said that, I’m not the one forced to live with the disability, I’m just observing it, guiding it and trying to lessen the burden of it. In the end, Pickle is the one who has to deal with its impact, but that’s not true. We ARE forced to live with it and we are dealing with it’s impact.

I haven’t seen Jedi or my Diva since Thursday when they were shuffled off to my husband’s father, whom they have coined “Grandpa Doug” so that we could prepare everything else to have Pickle admitted Saturday morning.

Jer and I. Two people who couldn’t have been on further life paths from Pickle when he was conceived … born. Pickle’s visitors have consisted of myself, my husband and my parents. Jer brings me dinner, holds me and plays with my hair. Plays video games and colors with Pickle.
I don’t know.  I’m tired. I’m rambling.

I’m off to sleep on the plastic couch in the corner.