Today was a hard day. I am so glad to be home. So glad to have this sweet boy snuggled in my lap again, sleeping next to me in bed. Yet, when I look at him, there is a flash – just a nanosecond – where I think of his death. When I see what it will be like to hold him when he is lifeless, his body just an empty shell, my heart shudders and panic seeps into my very marrow.
My children are my heart. They are everything good about me. My husband and I made something beautiful, and we see it every day in those shining faces.
I’ve been allowing myself magical thinking. Believing that even though he has a terrible disease, he will beat the odds. He will be the occasional baby that lives to be 15 or 20. And then sometimes, the truth slips in. Less than 10%. Less than 10% survive to one year.
Just this past week, a sweet 3 year old trisomy baby abruptly died. Her parents were completely unprepared. The trisomy community was completely unprepared. It was like a knife to the center of my being. It cut straight through the shell I have built around myself, the shell of believing, of being eternally optimistic, that James will be that one in a thousand. It split me open and the reality of what we face came spilling out.
I am tired. I am so anxiety ridden sometimes. I snap at my daughters. I yell when I should be patient.
My daughters decided today would be an excellent day to empty out every single clothing drawer onto their bedroom floor. They have a fairly significant amount of clothing. I can’t even deal with the mess. They took a bath mid-afternoon to play. There are wet towels piled on the bathroom floor. The dishes from dinner are piled in the sink. There is an overflowing basket of clean laundry at the foot of my bed. I have no clean burp cloths. James’ medications for the next week need to be dispensed.I didn’t make dinner, we reheated leftovers. I need to put away the girls’ summer clothes and start figuring out what they have for winter clothes.
It sounds like I did nothing today. I nebulized and coupaged James every 4 hours. I pumped every 4 hours. I fed my children. I played 3 games of Uno, 2 games of memory, and 1 Alphabet Game. I read my book some.
I am trying to find joy. I want to find joy so much. And many days, I do. But today, I just feel sad and cheated and angry. Watching James struggle, wondering why his oxygen requirements have so increased (we still haven’t really figured that out), watching him fight to breathe every time he spits up, knowing that his HCM makes him ineligible for heart surgery, knowing that somewhere down the line, I am going to watch him die from heart failure – I just want to lie down and never get up again. I certainly don’t want to do laundry and dishes.
When we were in the hospital, I never really let myself consider that he might never come home. I believed that once we figured out the tachycardia, discovered the HCM, he would get a medication “tune-up,” and we’d whisk out of there. Somewhere in that thought process, the reality snuck in – that we might never leave. That instead of going up, he might go down. Every cold, every sneeze, every inexplicably fast heart rate could signify the beginning of the end. And there won’t necessarily be any warning, any time to prepare. That is the reality of trisomy 18.
I’m suspended in this time, waiting.
Right now, I am going to bury my face in the little crook between his neck and his chin and inhale that sweet, sweet baby scent that he still has. I am going to try and find my joy again, and try not to let trisomy 18 steal it. But sometimes it is so, so hard.