Don’t cry

This post rambles a bit, just fair warning.

I have no desire to leave the house. I have no energy. I can’t play with the kids. I save all of the energy I have for the myriad doctor’s appointments, and when I come home, I’m just spent. Completely. That feeling lingers for days. It’s making me feel like a terrible mother. The last 2 nights, we’ve had re-heated leftovers (that my wonderful mother-in-law made) for dinner.

Dr Furigay says that we have to put it down sometimes, this burden that we are carrying. And I am really, really trying.

Last night, despite all of my attempts at hopefulness, I became so bleakly grief-stricken. I read another FB post of a T18 mom losing her baby (boy) at 33 weeks of pregnancy. I am currently at almost 34 weeks, so of course this struck a chord. My mind went down the path of burial versus cremation should he die. And then I started thinking about what it must be like to see your child for the last time, to hold him for the last time, and then to have to relinquish him to another person, and to never see him again. To have to choose between putting his body in the dark soil or committing it to the flames. To let your baby go. To not be able to nurse but to have milk. To have been through labor but have no newborn to hold, only the pain of post-partum and the grief that feels like it might consume me. My heart felt – no, feels – like it is being ripped out of my chest.

No matter what we do, no matter how well he does, he will die before we do. He is not going to outlive us (obviously barring any tragedies). He is going to have a truncated life, and while it will be filled with love and hopefully happiness, it will also have pain and suffering that no parent would ever wish on a child. And I am going to have to bury him at some point. I am going to have to say good-bye to one of my children, far before his time.

I had children later than I expected. Jim and I had been married 12 years before we took the plunge. I always knew I wanted children unquestionably, but it wasn’t until I had them that I realized just how much I wanted to be a mother. Being a mother completes me. It is ultimately what makes me happier than anything in the world. I want 4 or 5 kids, but since we started so late, that’s not going to be possible. Still, I find so much joy in my children and in watching them grow. This pregnancy before the T18 diagnosis had been so much harder on me physically at work that I had pretty much decided #3 was it for us.

Yesterday, I talked to Evaline a little about the VSD (in case you missed it on Facebook, James does have a moderate to large heart defect – a ventricular septal defect. It’s the most common kind of heart defect across all babies). She laid besides me on the couch and cried with one hand on my belly, waiting to feel her little brother kicking. She asked me if the doctors could sew up the hole in his heart, and I said that they could. She asked me if the doctors were going to give him a shot to make him sleep, and I said that they would. She then asked me if he would wake up, and I said that we hoped he would, but he might not. She asked if there was a shot that could wake him up, and I said sort of (referring, I guess, to epinephrine or atropine should he arrest). I told her that we wouldn’t have to worry about the heart surgery for a long time, and she shouldn’t worry about it now.

She asked me the same questions we covered on Tuesday – will he always be sick? Will he die young? And she just cried. At some point, I told her “don’t cry.” And then I realized how reflexive and stupid a thing that was to say. Why shouldn’t she cry? I cry 3-5 times a day, depending on the day. So I rubbed her back, and I told her that it was ok to cry, it was ok to be sad, because mommy and daddy were sad too.

I know what we are facing, so I am trying to take joy in what we have now. He is here, safe inside me for the time being, my other children are healthy and happy, and our lives are currently relatively unchanged by this diagnosis. So much is coming in the next few weeks that I am trying to focus on the calm that we currently have, but sometimes this is impossible to do. I feel utterly isolated in my grief despite the cards and flowers and outpouring of support. There is no way to explain to someone all of the fears I have, what it feels like to grieve before something has happened, what it is like to know that ultimately, your child is going to die.

Today, I am going to try to get out of the house with the kids. Or maybe not. Just typing that made me feel tired. I guess we’ll see how the day goes.