I have been slowly inching away from things and people in my life. I find myself living away from friends, feeling removed and emotionally apart from everything I have held close before.
I find myself mourning too many losses. I find myself skipping over Facebook posts, because seeing accomplishments of my friends’ children is too painful to see. And I’m not talking about typical children here. Those have not been in my feed for the past 2 years. I used to eagerly invite new members into the GRIN community. These days I can’t find anything nice to say to them, so I stay silent. Seeing their children sitting, looking at their parents, holding a toy… It’s just too painful to see.
I have given up on therapies, I have given up on hope. I try to enjoy every pleasant moment with my boy while I can. It is utterly cruel to live knowing that death is at your doorstep, but you don’t know when it decides to walk into your home, again.
Our last hospitalization was beyond traumatic and we know we are living on a borrowed time. We decided to not fight anymore. We signed DNR for Tomas, we discussed scenarios and legal issues of choosing not to intervene when the inevitable comes.
Since then I have sunken into a deep darkness that is only bearable thanks to my garden. I long for solitude and dread this loneliness at the same time.
I try to imagine my life without Tomas, but I no longer know who I’m. I’m alive, but my heart can no longer feel anything, because it has been destroyed by the pain of Sara’s sudden death and daily witness to my son’s slow brain death. Very few people understand my reality. I’m part of an exclusive club of humans punished for no reason with a sentence that is more cruel than any prison. I live in a prison of my son’s disability, I get punished daily for loving him.
I’m quietly waiting for the next seizure, for the next medical event, for the next ambulance ride, for the next talk with doctors after being awake for 20 hours. There is nothing I look forward to, because I don’t want to be disappointed when yet again it doesn’t happen. It is freeing to live without expectations, but it is also beyond joyless.
I always end on a positive note, but not today. For the first time there is no relief with sharing my burden. There is no silver lining. There is only resignation to the fact my time with my son is limited and I will have to witnesses his death, just as I witnessed my daughter’s last moments. I have been resisting the notion that losing Sara broke me, but now I know there will be nothing after Tomas’ death. The black hole will swallow me for good.
ktojoy 