Be happy…so I don’t have to be uncomfortable

Be happy!!! I hear this often as I’m sure many do, but it mostly comes from people who have never had caregiver worries and who live the typical America life. Sometimes it’s not as easy to live it, even when you really want to. Thankfully for many, when, and if you do see a caregiver, you might think, “thank goodness that’s not me”, and you don’t have to think about it again. Do I sound mad? Well, some days I get mad, and I get frustrated, I want to be the person telling someone not to worry and just be happy.

Last week I went with Eli to go support Ella at her soccer game. She is not a player, but a “coach” of the 8th grade girls soccer team. We can stop here and say that Ella will never be that kid ON the team playing, she will be the one rooting from the sideline, but that’s not even my worry right now, because some days it’s easier to accept that than others. So, Eli and I went to the game, and as we found a place to park, I realized that there was really no way to get him up the hill. It was a big hill on all sides and by no means could I have gotten the chair up there, and I pretty much believe I can do anything. The 7th grade coach had a couple ideas but most of them probably would have embarrassed Ella more than I would have liked. So, I drove to the other side where the hill was just as big thinking maybe there would be a way up, but, there was no walkway for either a wheelchair OR walker. I decided to park on the side of the grass where I could see Eli in the car and walk up the hill to watch. We didn’t stay long because let’s face it, I brought Eli to get some fresh air and there he was in the car on his phone, so it was pointless.

Now, I’m not asking every school to put a walkway in for handicap people but maybe? Maybe they could find a way for people who can’t rely on their own legs to get to watch their child or grandchild play? Maybe it’s asking too much, but regardless it’s sucks!

My heart is just too sensitive I’ve been told, and yup it is, but I love that about me! It’s made me the woman who I am today and I am ok with that.

This past week, there was a fall fest at school for Ella. She had been talking about it for two weeks and couldn’t wait to go. This was a non parent event (except volunteers) and I refused to be that mom to her on her first event without me. Yes, this is Ella’s first event besides Girl Scouts and the rare outing at a friends house many moons ago. I was so excited for her and I was also beyond nervous.

Ella went, thanks to a Ram Buddy who volunteered to go with her, and I have to focus on the fact that there was someone who was willing to hang out with her. Re-read that … wiling to hang out with her. Is that what this journey is about, being happy because someone is WILLING to hang out with my sweet Ella?

It’s uncomfortable to hear the reality of how this disease has changed our lives sometimes. The biggest being the “friend” change. We have watched Eli and Ella go from having people in their lives to having people watch from afar. The phones don’t buzz with texts, and the bedrooms are quiet on the weekends instead of filled with the laughter from having a friend over. The days and nights are spent with me being their best friend, watching movies, listening to their stories, and being by their side. I wouldn’t change it for the world but I wish I could change the world for them.

Why though? Why is it so hard for people to want to be with them? How do they go to a school of 700 a class and there is not another child that can relate and WANT to be in their life? I’m not blaming anyone but the disease. It’s changed them and it’s hard because to have a friend you have to be a friend… something that doesn’t come easy to them.

MLD has made me angry, yet also grateful. I’m envious of those who don’t know these struggles that I write about, yet many days, I AM thankful that I DO know of them, because it allows me to be more empathetic to others in similar situations and a better human.

This is something I wrote quickly after I woke the day after the fall fest, these are the feelings and words that make people uncomfortable, but unfortunately this is the life I was given and writing is a release.

“I’ve been up about an hour, and yet I still hear the buzzing in my ears, the low grade fuzz that doesn’t seem to go away, and my head feels heavier than the rest of my body. You know that feeling, like You drank one too many last night, but no, this isn’t an alcohol headache, it’s a “what the f is my life about, crying headache”

I apologize if these feelings make people uncomfortable and I’m even more sorry that I feel what I feel. It’s a curse and it’s a blessing but it’s my life and I’m doing everything I can to try to stay afloat.


~ by Rebecca on October 12, 2022.

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