The First Year Without Sarah

The first time my mom fell and broke her pelvis in a freak accident, she had a hairline fracture and was able to make a fairly full recovery. She used a type of walker called a rollator for years after that, up until the time she fell again inside her apartment and broke her femur. I didn’t think she really needed the rollator after I while and I wondered why she kept using it. It kind of bothered me. It was a pain to get around with and I wondered whether it was a sympathy thing sometimes.

Since I have fallen and busted my wrist, I have a different take. I can imagine she was afraid of falling again after the first accident, and the rollator made her feel a sense of security. A fall really damages your sense of safety and you feel like it can happen again at any time.

Sarah had a very primal fear of falling that people with neurological disorders experience. The fear of falling that infants experience, with that neurological “jerk,” never goes away in people with cerebral palsy. She needed us next to her if she was on an exam table or even a bean bag chair. Her body was telling her she could take a tumble even though it was impossible. We could usually get her calm and override those signals with our presence and reassurance.

It would be nice if we all had a falling coach or team, not just for physical falls, but for all the shit life throws at us.

We went to our Grief Group last night and got there a little early. I was browsing the group library (really just a pile of donated books) and the “librarian,” who likes to make recommendations, handed me a book called “Now Childless” and said she thought it would be a good fit for me, or something like that. It looked like a product of the 1980’s or maybe even the 70’s, one of those pamphlets you were given when you got your first period that said “Now That You’re A Woman.” But maybe it’s full of wisdom and common sense tips.

The topic of discussion was the best ways we manage our grief. A lot of people talked about having to spend time wrapping up their children’s estates and sell their homes and so forth and how that kept them busy. A lot of people talked about traveling, which has been good for us too, at least the two trips we have taken.

There were several people who, like me, are still struggling with their grief management. There were similar stories of watching too much tv and emotional eating and so forth. I really hope that in a few years I’m a success story.

There was a mom at the meeting who was new who shared her story. She said her daughter had died Christmas Day driving and falling asleep at the wheel. I thought wow, so this is really fresh for her. Then she said it happened 29 years ago. But it still affects her every day.

A number of people talked about their belief that death can’t be the end for their children, and the comfort that idea gives them. Either religion, or just some philosophy or idea of life after death. I do believe Sarah’s energy still exists and that we are still connected. I have to.

I’m feeling a little anxious this morning after reading a friend’s post on Facebook that her elderly beagle had died. I don’t know anything about the circumstances, if the dog was sick or had cancer or some other ailment.

I think once death visits you, the pump is just primed forever for you to fear it’s always going to be your turn. Polly the beagle is lying here next to me looking pretty healthy for a 12 year-old dog, but I’m scared for her. With that fear comes guilt. Am I doing enough for her? We do feed her too many treats and table food.

Polly is a big part of our old life with Sarah and it will be really hard when she does eventually die. It’s very hard to part with any remnants of that time. I tried the other day to go through some of Sarah’s clothes to donate a few long-sleeved shirts to a charity. But it was so painful to touch and see her little clothes and be thrown suddenly into the sense memories of helping her dress. There are so many little things we did with her and I don’t want to forget them.

It’s been over eighteen months since Sarah died and even given the up-and-down nature of grief and the fact that everyone says the second year is harder than the first, things have been pretty rough for me. Breaking my wrist didn’t really help at all and I’ve just been pretty bummed out lately.

A friend of mine advocated for me getting more talk therapy and recommended her therapist who she saw for about a year after her mother died. I decided to give her a call. She sees most of her clients virtually. She has kind of a squeaky voice. Weirdly she keeps parakeets and you hear them squawking sometimes in the background.

I won’t actually start therapy with her until March 19. Sometimes I try to talk myself out of it. Maybe the parakeet thing is too weird. But maybe Sarah would have really liked the parakeets.

Last night I was talking about my broken wrist with Max. We discussed how I was healing well and doing my assigned physical therapy exercises and how generally things are advancing as well as can be expected. Gold stars all around. But then I just broke in and said “I just really wish this had never happened.” He said “I wish it hadn’t happened too.”

I feel the same way about Sarah. I try and try to count the ways I’m making progress and feeling better about her being gone but then I just enter another stretch where I’m back in denial. I want a do-over. I just wish this had never happened. I want my life back.

It’s no use, and I know that’s not going to happen. I have to move forward. It’s hard right now, especially with the broken wrist. Maybe I should just be patient and kind to myself.

Another Rare Disease Day has come and gone and I can’t help wondering what the point is sometimes. You’ve probably never heard of Rare Disease Day. It’s kind of like Library Appreciation Month. Everyone’s in favor in principle but nobody really gives a shit. And then all the many many rare diseases seem to be competing for attention, like desperate Miss America contestants. Pick me! I have the cutest kid! Pick me! I have the saddest story!

Of course I see the point of Rare Disease Day. Not a lot of patients (less than 200,000) have each individual disease but together there are millions of people suffering from rare diseases and there’s little incentive for Big Pharmaceutical Companies to do research on drugs or gene therapy for small groups of sufferers, so bring strength in numbers. Also, there are links between rare diseases – Sarah’s De Novo Early Onset SPG4 is a rare disease that is a subset of another rare disease, Hereditary Spastic Paraplegia, which is a cousin of ALS and a couple of other neurodegenerative conditions. So research for one can potentially benefit the family of disorders.

So I don’t know exactly what I’m belly-aching about. I have this selfish “What about my kid?” feeling sometimes when I see other rare diseases played up that I know is pretty slimy, but there it is. I also feel like we went through a good stretch of years without a diagnosis where we were told that Sarah had cerebral palsy. CP is not a rare disease. It gets little attention and has no real lobby despite being one of the most expensive conditions. Diabetes is another non-rare disease. Kids and families go through so much with these conditions. it would be good if we could all just feel special.

It’s been about two and a half weeks since I broke my wrist and I’m getting along much better. I’ve had surgery to put two pins and a plate in it, graduated from cast number 1 to cast number 2 to a sort of Marvel Superhero type black splint I’m wearing now. As you can see I’m even typing again.

I have to do physical therapy to regain full range of motion for my wrist. Right now I can’t hold my hand palm up or straighten out and my thumb is kind of numb. And I can’t wear my wedding or engagement rings. Supposedly it takes six months or so to get your full activity level back.

Kids must be much more resilient than adults, because I broke my arm pretty badly when I was 10, and I don’t remember having or needing any physical therapy (or surgery). As soon as the cast came off, I was fine. I guess middle-aged bones aren’t so lucky.

I’m pretty much off painkillers now, prescription and over the counter. Just a little Tylenol at night sometimes. The first day they gave me something really strong when they reduced the fracture. I had a dream that Sarah was holding my hand in her little hand. It was so nice.

Thursday I was walking Polly near our house and I slipped and fell on a little sloped part of our lawn. The grass was icy or wet or something or maybe it was just my natural clumsiness. Anyway I went down on my left hand and sure enough I broke my wrist. It is going to need surgery.

There’s a lot I want to add here, but pecking away at the keyboard with one hand is extremely tiresome. I don’t know why this happened. Couldn’t the universe have sent me a postcard ahead of time to forewarn me?