Unpacking…

It has been almost four months since we moved into our truly “forever home”.

We somehow managed to make 4 rooms fully functional, but our new joint office and the rec room downstairs have been neglected so far. It is almost comical how the state of our home reflects our minds. I have a hunch that J’s mind is in fairly similar place as mine.

The recreation room, for the lack of a better label, is currently home to a spin bike, tv and a pile of boxes that nobody wants to open. As they are true Pandora’s boxes of our own. They contain all the evil and dark to be released upon us if we lift the lids.

Today I’m alone, but not lonely, all but longing for the one I can’t hold anymore.

When the lid of the box was lifted all I could see was her t-shirt with large slogan “DON’T FREAK OUT” on the chest. We have used this phrase countless times, because her intensity of emotions was beyond this world. I have grabbed the empty sleeves where her hands used to be, clutching the emptiness desperately searching for a metaphysical trace of her… the radio playing in the background;” I died in your arms tonight…” and I felt the black hole altering time and space open in my heart again.

I know this entity well now. It first opened when the ICU doctor told us that “she will not recover”, the second time it opened upon me reading what GRIN1 mutation means. Both times my brain stopped working, no thoughts, just automated behaviors creating no memories. Just my body going on about the day with me no longer here. My heart sits at the edge of this empty blackness trying to escape the gravitational pull. With each word written, each tear shed my heart becomes lighter and lighter. But this time it will be long before it is light enough to escape. This time it is shedding tears for Sara and for Tomas.

Sara is gone, but Tomas is also not here. His strangely deep and yet bizarrely pointless existence is a gift and the biggest burden in one. I do not believe in God, so that whole line of explanation is not valid in my world. He is our brain dead daughter in a new body, what we tried to escape came back to us. Is this a proof of destiny? No point proving what you can’t change.

How do you find the urge to continue?

I know that in the past month I have slowly lost the fire that used to fuel me for the past four years. The flame is now a tiny flicker, as the fuel was destroyed by the non functioning system of social supports for our son. I no longer have energy to advocate for him, to chase people who are supposed to help us. I still hope I will find some fuel, but I will not be mad at myself if I chose to abandon this pursuit.

I had to leave my dear community of GRIN parents for now, because I can’t be around this much hope and positivity. The black hole in my heart just swallows this energy up and somehow it gets fueled by it growing bigger and bigger, sending painful flashes to my brain. Painful reminders of “you will never… Tomas can’t… he will never…”

I see to have a voice that would shout at those thoughts, but this voice have grown quiet.

My stories used to have messages of hope at the end. Even the Pandora’s box supposedly had only one thing left inside, hope. But my box still have too many things in it. Sara has left an enormous pile of possessions, treasures, creations. They all have to be unpacked, touched, find a new place to live. But all her things contain all the sadness in the world, with each touch this energy fuels the black hole. My heart is holding onto the edge with all its might, periodically regaining better grip only to be pulled back in, closer and closer to the point of no return. I have never gone in, I always managed to escape, emerging back into this world. Only this time I fear the one re-emerging will have little to say to the people in this world as the black hole is now two holes living in my heart. One’s heart can only be alive with couple tiny holes, not two endless black holes.