Let’s just say it has been pissing rain for weeks and it will piss at least another ten days or so. Tulip festivals are just fields of green and nothing else, my garden is a weedy mud pit. I hope by now you realize the mood of this post.
It has been hard, we are still waiting for vision services to start. T’s seizures were well managed, but that is now achieved with ever increasing amount of heavy drugs. Yesterday he slept for 19 hours. I stopped to be anxious about yet another day when he didn’t complete any Physio, when he didn’t learn or practiced anything… Now I see it as a day when his brain rested and didn’t have any obvious seizures. It’s not because I’m eternally optimistic, it’s because I have no more strength to mourn yet another day of absolutely no progress, of yet another milestone missed, another milestone never achieved.
On a rare visit to a store I walked into the toy department only to leave in tears. Out of the rows of toys not a single one can be used and enjoyed in our house… My eyes were swelling and then I walked by the children’s books. I love books and Sara loved them too, we have a great library full of amazing books I was dreaming of enjoying with Tomas… Instead the books are hidden behind the door as not to remind me the loss that hurts me the most. I somewhat accepted his disabilities, but the fact he is blind absolutely rips my heart apart over and over.
In two months we will “celebrate” birthday of our dead daughter, birthday of our profoundly disabled baby and the anniversary of our daughter’s death. There is nothing to celebrate, it’s just another occasion to remind us of the shit show that will forever be our life.
I don’t want to celebrate my baby’s birthday, because it is too painful and meaningless. I would rather celebrate milestones achieved, but even then I dread there will be no party anytime soon.
We are seeing psychologist specializing in trauma, she has no idea what she is about to encounter. We are pretty good at pretending normality these days, but inside our home there are gallons of hidden tears, it is so bad we even hide our tears from each other, because we are not sure if we can support each other. The dam is getting full and the wall can only hold so much for so long. I know the flood is coming, but I no longer care what it will damage. Nothing got fixed after the last flood, so there is not really anything valuable to protect.
On bad days I feel greatly alienated from people, on worse days I feel injustice towards the people I know. Today I feel trapped in the misery of all that I lost in the past two years and the proverbial glass is not half full, it is bone dry.
ktojoy 