The one thing I have noticed since my diagnosis is that my feelings are so much more...feelings-y. I've always been emotional, but since finding out about the RP and then Usher syndrome, not only do I feel ALL THE THINGS, I feel ALL THE THINGS on a massive and astronomical scale.
And that includes stuff I had never had much experience with. Always I worrier, I never truly felt anxiety before my diagnosis. Now, I'm prone to waves of it. About stupid stuff. Far more frequently than I would care to admit.
Right now, I'm in the midst of one of those evenings. It's been, to quote Lin Manuel Miranda (a fave in our home) a "bit of a day" -- today is the day of the annual cookie decorating party that I've thrown for my daughters every year, for more years than I can remember. We bake dozens upon dozens of cookies, invite their friends over to decorate and take cookies home with them. Laughter and sugar buzzes ensue.
Like I said, we've done this for years.
This year, none of the friends my youngest daughter invited showed up. And only one RSVPd to say that they'd be unable to attend due to a familial holiday obligation. It's Christmas time and the week before Christmas no less - I know it's most certainly the season for calendars to fill up with other stuff... but damn, y'all. Pick up a phone, would ya?
THe look on her face when she realized no one was coming ripped my heart in half. I didn't know what to say. I didn't know how I could make it any better. How could I make it right for my eleven year old when her fourteen year old sister's friends all showed up?
There's no other way to describe it, really - but HORRIBLE.
We eventually managed to have fun decorating (and eating) cookies, but I never stopped hurting for her.
Even now, hours later, tears sting my eyes and I just wish I could do something, ANYTHING, to make up for the fact that her friends were so careless with her feelings today.
It's HARD. And I'm tired of things being so difficult.
It's dark a lot at this time of year. It's dark when I go to work, it's dark when I come home. Often these days, it's snowy too. I don't want to drive in the dark and snow. I just want to stay home. A drive to Target this morning left me so tense, my arms and back hurt. Not because I couldn't see, but because I'm so afraid of hitting a patch of ice and crashing. (Turns out, the confidence of 20+ years of uneventful winter driving is wiped away with one patch of black ice and a telephone pole).
I get scared about my eyes and it's a weird thing to me sometimes, to be worried for my children and the hurt they feel at what's going on in their day to day life and to be scared by the fact that I'm losing my vision... because while that's always looming, at least that isn't happening today or tomorrow.
I sat on the floor of my daughter's room tonight. We were both feeling "smad" - our word for sad and mad. I couldn't say anything to fix it. We talked about it a little bit, about what made us feel sad and what made us feel mad. I told her I wanted to curl up in bed and have someone else take care of stuff for awhile and she said to me, "We need to invent something really cool and then we can hire a maid."
I can't fix any of it. That bothers me. All of it feels like it's out of my hands, and that's not great for me.
I found myself getting anxious about a work project. All of this other stuff is swirling around me - sadness for my daughter and anger at the sixth graders and their parents, stress about my eyes, exhaustion with winter and its shorter days. All of these emotions make it far too easy for anxiety to sneak in. I have no real coping skills for that; I've never really felt like this until now.
It doesn't seem fair. I don't know how to fix it. I'm so tired of ALL THE FEELINGS.
I know that a new year won't make it better on its own. That I probably have some work to do to change much of this, but right now it feels like an awful lot.