I open my phone, staring numbingly at Facebook. My finger moving the pictures down, one by one. Over and over, all I see are happy, smiling people. They are boating, water skiing, or lounging on the rivers or lakes.
They are grilling, or cooking or visiting with family.
They are smiling…
The sun is shining…
They are happy…
They are celebrating…
I put my phone away. Then grab it again, looking once again.
What am I looking for?
The 4th of July has always been one of my favorites! Yet, this year, I can’t quite muster up the enthusiasm or excitement I would normally be feeling. This summer feels…. off. Actually, every year since the diagnosis, summer is getting harder and harder for me.
I start getting the kids and the snacks, and Matthew loaded up into the van. The kids are so excited to buy fireworks. They notice I am snappy with them. I start the van and take a deep breathe. I instantly feel guilty. This is not their battle.
I try to make up for it by spending too much on fireworks. The way I parent is completely different after the ALS diagnosis than it was before, but that is a story for another day.
I snap a few pictures of their excitement. Of course, as soon as I whip out my phone to take a picture, their excitement turns to immediate, “Mom, why do you need a picture!” and then they either hide, turn away or frown. I swear they were all smiles and happy about the fireworks three seconds before that! However, it shall go down in Facebook history as them looking perturbed and irritated for even having to stand at a fireworks stand in the first place.
We load back into the van. Immediately, Matthew and I hear bickering and fighting between the girls. I am already tense. My patience is the size of a walnut! (For those of you who have never heard this phrase, it comes from some random parenting book I read when my first daughter was around 3 years old. It suggested always giving your children a visual, so they can relate to your feelings. Some days I give them the visual of a watermelon, other days, a pea!)
However, I forgot to mention the visual and jumped right into threatening them with no pool, no fireworks…I may have even threatened to take their birthdays away. I do that sometimes too. I stop talking, pivot back to my steering wheel, and breathe…
I don’t really want to be going to the pool party.
Damn, there is the guilt again.
My bad mood has nothing to do with my children, and their bickering is very much a normal part of growing up and sitting in a space that is too small, and emotions that are sometimes too big for little people. Excitement is such a great emotion! I am just not feeling it on this day.
We drive to Matthews’ friend’s house.
This is a home where friends come to gather. There are traditions here. There are a lifetime of memories here. The family and friends that come here to celebrate are friends that have been friends for a lifetime. Their parents were friends before them, and the grandchildren are growing up with these same memories. It is nostalgic. It is sweet. And as usual, I feel as if I don’t belong.
I sit by Matthew, adjust what he needs adjusted, checking to make sure my children didn’t fling their clothes from one end of the pool to the other, and I sit.
My emotions are overwhelming me, so I sit with sigh and a flounce of irritation in my body language, and I am sure my face is squinty and looking sullen. From time to time, people walk over to chat with Matthew. Some for a moment or two, and others for a bit longer. I am on the other side of Matthew, so I don’t speak much. I am trying to process why every time I am near these people I feel so completely overwhelmed by my emotions that I just sit there. The alternative is that I will break down crying.
Now I am just pissed. I feel tears building. I am angry. I am angry at everyone there. I am angry that I am sitting there, feeling sorry for myself, and sad for us. I should have been playing with my kids in the pool. I should have been laughing and letting go in the sunshine. Yet, I am so overwhelmed by my mirade of emotions, I literally count down the hours till we can leave.
There is irony in this situation. I am constantly lecturing my children. I lecture them almost daily about situations like this, yet I am sitting here, not taking my own advice. Someday, years from now, my children will say, “Mom always said, you can’t control how others behave, you can only control how you react.”
I am acting like a sullen spoiled brat.
We left after several hours.
Later, I would find myself sitting in my neighborhood, watching my children make new memories with new children. We would be laughing and giggling. I was more relaxed. My overwhelming emotions are now leveled off. I no longer feel like crying, and I am no longer sullen. Matthew and I enjoy the rest of our fourth of July feeling much calmer, even after there were a few close calls, a few minor burns, (nothing too serious!) and happy children excited to see some really cool illegal fireworks that were very up-close and personal that evening ( I am already planning next year’s excursion for those lovely ones that cannot be bought at just any ole’ fireworks’ stand!)
So what was so different about hanging with friends and family at the pool versus hanging with the neighborhood friends and children?
I think it is because when we are around Matthew’s friends and family, I am instantly irritated. We are two and half years into diagnosis, yet their life has continued with little to no interruption. Should I logically be angry about this? Absolutely not! Yet, we show up to their events, and I find myself irritated with them. In contrast, I have no expectation for my neighbors’ lives to have been changed due to Matthew’s diagnosis.
I see Facebook posts of his friends and family celebrating. Yet, it is my children and I who are caring for Matthew, day in and day out. They have no idea what our daily life is like, nor what it will become as more and more time goes by. Logically, is it really their job to understand? Probably not.
When we are invited to BBQ’s, and we show up and I just sit there, I logically understand that I seem like a jerk for just sitting there. It has nothing to do with not wanting to participate. It has so much more to do with the fact that I am judged. I know there are those who do not like me. That no matter what I do, it will be wrong. I will never do enough or be enough or try hard enough in their eyes. Yet, those opinions will always come to me second hand, certainly never said to my face.
So when we are around Matthew’s family and friends, I sit there, constantly wondering what else was said about me or my children. What I did wrong this time in their eyes, even though logically, I know that this person or these people will never understand what we are going through, or what it’s really like to do this every day, with no break.
Logically, should I feel criticized or let down? Absolutely!
I am capable of asking for help, but the pride I feel won’t let me. The stubbornness inside of me stops me just as I open my mouth, because I feel that those who truly want to help will show up. They will be a part of our lives because they choose to be, not because I asked for help.
The anger I feel may also be a bit of jealousy. Their lives seem so carefree to me. Is it logical to feel this way? I think so? I remember not too long ago, not knowing what ALS was, or what it meant to someone who was diagnosed, or what it meant to those caring for that person. It was just a few short years ago that I would play on the water, or take my children to do something. There was no thought, we just jumped in the car and went. Summer was fun and carefree!
Now if I want to do anything, it has to be planned. I have no help with my children and no offers for them to tag along. They are missing out on boat days, and learning to ski, to go tubing or to swim or to play on the water. They are not asked to participate with families and friends in their excursions. My pride stops me from asking. If people want to be a part of our life, shouldn’t they show up? Why should I have to ask?
It was not that long ago that I was carefree. That I could come and go as I pleased. Now, everything is detailed. If we want to go for a drive, we plan it around potty breaks and eating. There is no option for Matthew to use a public toilet anymore. Many times, he won’t eat if it’s going to be a long day. Traveling, even for the day, is thought out..it has to be planned.
It is easier for people to come to us, yet they seldom do..if at all. Their lives have gone on…
Because of this, I feel alone and disconnected, even if I am completely surrounded by people.
Which makes me feel like crying….which pisses me off…I hate to cry.
So, I slap a smile on my face, and I fake it till I make it..