Did you just sing the Frozen song?
I did and I have had to, several time this week. Mainly to keep up my spirits. That is super hard to do when your enthusiasm is tanking. Big time. I have to remind myself that there are going to be things that I need to Let Go.
It’s hard.. REALLY Hard.
It started with talk of putting Chewy back inpatient in the hospital. I shouldn’t say talk. It wasn’t talk. It was scheduling. Once we schedule, for the inpatient, I go into planning mode. I’m always in planning mode. (insert eye roll here)
I know that being inpatient is exceedingly hard on Chewy. But, for some reason my brain engages and I go into “planning mode” and can’t stop asking questions and making comments about planning. It is really to make it easier for while we are there.. then changes when we are there anyway. SO does the planning really matter? Does it help? You can’t be comfortable in the hospital. No amount of planning is going to make a miserable week of migraine aggravating, vein stabbing misery tolerable.
So why can’t I keep my mouth closed and let the guy have time between now and then to not think about it?
I need to lighten up. We are pros at this. Four years of hospital living has taught us plenty. I wrote up a blog post about what we take with us.
I need to plan silently in my head and in the background.. or really… LET IT GOOOOOOOO.
In the end, it’s what I had to branch out and do a lot of this week.
We had another prom invitation from the hospital. He went to one a few years ago. It was nice. He knew kids back then. Now he’s more isolated and you can tell. It shows in his spirit.
It was one more thing we LET GO this week. Not with out a little bit of a fight. We tried to give the opportunity to another kid that lost out on their prom, but that would have forced Chewy on a blind date. The Hospital would not allow us to donate it to someone else. Chewy would have to bring them as a friend.
So away it went. The RSVP to decline to attend.
One more opportunity that my CVS’r would not have. One more thing that has been taken away from him because of this condition.
Let me explain that. You may see it as us declining.. which we did.
But, who do you go to a hospital prom with? You have been isolated now for more than three years. Your “friends” are getting further and further away, and don’t even know when you go in the hospital.
Chewy was forced out of high school, so there very few opportunities for him to interact with peers. We tried College as an alternative to get him to interact with kids his age. But, so far, that has only led to one person that made things awkward for him to go. 🙂
So as we go through the remainder of his High school “career”, I watch as his “friends” are too busy to spend time with him doing the things that regular high school kids do. Knowing the whole time that I will have to add to my LET IT GO list.
His high school prom.. Is seven hours away. LET IT GO.. he doesn’t have anyone to go with anyway.
We already tried to fight with the school to let him back in so he could graduate with his friends.. that didn’t happen.. LET IT GO…
His “friends” are too busy to go to grad night with him.. LET IT GO…
I need to let go of a lot.
But, no matter how much or how frustrated I am… I imagine how upsetting it must be for him. Imagine being a senior in high school and everyone is too busy for you. People that you have been “friends” with since kindergarten. I knew that they would grow apart. I just figured it would be when they went away to college. Not because my kid got sick.
That I can’t let go.
I try to be the one that sticks around when the going get rough. Or at least I tell you to call me. I’m there. I ask if you need anything or help. I ask about you, often.
Today, and throughout the week, I have felt that my kid is being punished for something beyond his control. I can NOT LET THAT GO.
My kid and even his sister have missed out on so much because of this Monster Called Cyclic Vomiting Syndrome, and I can’t LET IT GO.