My son has never left the hospital a day in his life.
And I’m tired. I feel awful to admit it, but I just hate that this is my life. I never asked for this. I was apprehensive when I learned about the high risk nature surrounding our pregnancy, even when others were excited.
We found out we were having multiples at our first wellness check, and at twenty weeks we learned that he was growth restricted. His hospital course has been nothing but a series of unfortunate events that led to him needing a tracheostomy. Thankfully his siblings are fine, but in some ways they just make all of this harder.
I just want to provide the best life I can for them, but in doing so I feel like I’m failing their brother. Every moment spent with them, is a moment away from our hospitalized son. Every moment spent with him, is a moment I am an absent father to the others. I can’t help but compare them. It makes me feel awful, but when I see how well his siblings are doing I feel grief for him. Sometimes when I see him struggle, and I feel little because it is so normal for him to struggle, I can’t help but picture one of his siblings in his place. It breaks me every time.
We’ve been “three months away” from going home for so long now, but something just keeps coming up. A new complication, a new illness, a new medicine to wean, it just feels endless. I know whenever we do get home it will just become even harder. He will go home on a ventilator, and will require 24/7 care. My wife and I will be split between taking care of him, his siblings, and attempting to provide for all of them by squeezing in remote work.
When I was in middle school, my brother was diagnosed with cancer. It took nine months for him to die. I have spent the rest of my life terrified of becoming my parents, terrified of having a medically complex child. In the hard moments I envy how quickly it ended for them.
I love my son. I want him to live a normal life. This is just such a taxing situation that sometimes I feel stretched beyond my empathy for him. I don’t know why I’m posting this, but therapy doesn’t help. So I figured I’d scream into the void instead.