The weight of sorrow.

Sometimes, sadness is a physical thing.

We had a babysitter today with plans to spend a few hours together. Last night, I considered canceling, because I just didn’t have any desire to go anywhere or do anything. I decided to wait and go ahead with our plans anyway. When I woke up, I felt ok at first, but as I showered and dressed, I started to feel physically heavy. It doesn’t help that my fluid level seems way, way up today.

After touching base with our babysitter, we got in the car. And then neither of us could decide what to do. Ultimately, we went to downtown and got breakfast.

Breakfast was fine, but I had nothing to say. I just felt empty. We briefly talked about cremation versus burial again, as I had spoken to a woman with the Center for End of Life Transitions earlier this morning. They have a lovely plot of land in Mills River that offers burial for loved ones. It’s a wild, scenic piece of property, not what one would expect of a “cemetery.” You can see it at carolinamemorialsanctuary.org.

After breakfast, we tried to decide on something to do. Normally, I thoroughly enjoy sitting in our local bookstore, sipping some coffee, perusing the books, reading. I couldn’t even muster the slightest enthusiasm for that. We can’t really hike right now. It’s too hot, and walking from our car to the restaurant made my heart race. I could not muster one iota of enthusiasm for any activity.

We ended up coming home. Jim went kayaking nearby with a friend and I… well, I went back to bed. Where I’ve been until about 30 minutes ago.

It’s funny how you when your baby is sick, you kind of forget that late pregnancy just plain sucks. Every twinge, funny pain, episode of mild nausea – I am convinced that something is wrong. My increased fluid levels also make it harder to feel James well, so with every lull in his activity, I become convinced that he’s died. It seems that I have forgotten that late pregnancy, especially in the incredible heat and humidity of July in the South (even though it’s been fairly cool this summer) is just plain not fun and incredibly uncomfortable.

I perhaps should not have stopped working, because I really feel like I am just waiting at this point. At least work was a benchmark for my time. I had to be somewhere and do something. Now, I just wait. I don’t want to do anything but sit and be still and wait for James to be born. It’s like I’m holding my breath, willing him every day to still be with us, to make it to August 4 so that we can meet him.

After joining the multiple trisomy FB groups, I think for a while, my hopes became a little unrealistic. There ARE kids with T18 that live for a while – into their teens, but ultimately, this disease is going to take James. And those children living into their teens are outliers, the rarities. In all likelihood, he will leave us before he is a year. If he does not, we will have to decide on cardiac surgery and other interventions that will only serve to slow down the process and will cause him a great deal of pain.

There have a been a slew of children that have died on my trisomy boards recently, and it is heartbreaking.

This post has no point really other than to say that today has been a really bad day emotionally. All of the strength and positivity and bravery that I’ve been trying to exude has leaked out of me slowly in the past 48 hours. I feel like a slowly deflating balloon. This must be the backlash I’ve known was coming for a couple of weeks.

On the bright side, friends of ours from Knoxville stopped in for a few hours with dinner and some support. It was good to see all of the kids play together. Everything felt slightly more normal, though I get worn out so quickly these days. I can’t tell if it’s late pregnancy in the summer or sadness or a combination of both. I wish I knew how to feel better.

 

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2 thoughts on “The weight of sorrow.

  1. I understand completely what you are going through. It seemed there was a heavy darkness hanging over me while I was waiting for our Liberty to be born. Then she came so unexpectedly! She was with us for only 18 days and we did everything medically possible to keep her with us as long as possible. Even now there’s still that same darkness…sadness that doesn’t seem to go away. My family went and had a day out last week and we had fun! I caught myself smiling and laughing…then started crying bc I was having fun. I felt guilty for being happy for a moment while living life without my baby girl. I don’t know how to make that go away. I’m sorry this isn’t encouraging….I do want you to know you are not alone! I pray you get all the time you need with your precious baby!!

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  2. Hey, sweetie! Just a silly idea: Evaline can “help” make a construction paper chain with one link for every day. At least you could have a visual of progress. 😏🤓

    Love you. Hang in there!

    Aunt Susan

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