I have to write what is on my mind tonight, but it is not upbeat.
I have met so many other people on this journey – mothers and fathers who have lost children, mothers and fathers who are losing children, mothers and fathers who are fighting for their children’s lives and right to treatment. There are so many heartbreaking stories. There is so much loss in the world. I am so angry tonight.
I am angry at the unfairness of this disease- at the unfairness of the world. A man stabbed his 6 year old daughter in the heart here in Asheville a few days ago. He ended her life because he was fighting with her mother for custody. This “father” took the life of his child – the most precious gift the universe can give.
Being a mother defines me. I love motherhood. It has shaped me into a better person. It has made me grateful for my own mother. Taking care of my son (and daughters) makes me happy. It completes me.
Trisomy 18 will steal James from me. I don’t know when, but it will take him. It always wins. I get up each day and I hope. I don’t despair. Deep down though, I know. I know what’s going to happen. I don’t know when or how exactly, but I know.
I met 2 mothers due around the same time as myself. One lost her son shortly after birth. The other is in the pediatric ICU with her daughter now. Her daughter is fighting for her life and needs emergency intubation. I think of these as James’ “friends” – babies with his disease, due at the same time. One is dead, and the other is fighting for survival. Today alone, I have seen at least four trisomy 18 babies that died in the last 48 hours. It is a wretched, wretched disease that breaks hearts.
It is unfair and I am angry tonight. Angry angry angry. I love my son. I would give up a limb or 4 to keep him alive and healthy. I would never hurt him. Alas, I have no control over any of it.
I have let myself engage in “magical thinking” since James has been home. He is doing so well, gaining weight, so pink and perfectly beautiful to me. I have let myself believe that he will be one of the rare cases. He will live a “long” life for a trisomy 18 baby (long being measured in a couple of years generally). I troll the boards for happy stories of older kids. They are few and far between, but they are there. I let myself be lulled into the feeling that he is a “normal” baby.
Then I bathe him and am reminded that nothing about his life is normal. Even wrangling him into the bathtub took some serious planning and finagling. I would gladly do that for the rest of my life if it meant that I could keep him here with me. And yet, there is nothing I can do to keep him.
This disease sucks and I hate it.