I recently had a Mama Meltdown.
You know the kind. You’re stressed. You’re under pressure from the day and one tiny little thing just sets you off.
For me, it was my adult-sized son pooping in his pants. He didn’t make a huge mess. It certainly could’ve been worse but the code brown, while I was cooking dinner and had no backup at home, was a majorly shitty situation.
It’s definitely not his fault. He could’ve told me he had to go, but he was in his walker and as a nonverbal child he doesn’t always give the best signals. I wasn’t paying much attention to him, truth be told. I was cooking a delicious chicken chili on a cold night. My husband was taking a break from life out on the snowmobile and my little Riley was reading quietly in the other room. Jamie was GoNoodling (playing GoNoodle on his touch screen) and busy. We usually take him to the bathroom whether he asks or not, every 30 minutes or so.
And so, as these things happen, I lost track of time and forgot to take him to the toilet. He pooped.
I had to try to maneuver him to the bathroom, remove all of his clothes from the skin out, including shoes and braces, to clean him up. He was not happy about that. He was upset about what he had accidentally done. And I just melted down.
I did not choose this life.
Something in me just decided that that was the moment I would mutter how I hadn’t chosen this life. This was not what I had signed up for. This life is not easy. It is so fucking hard.
And then I started crying. He was upset. He knew I was upset. And I am sure he didn’t know what I was saying under my breath or why I was crying. But he knew his Mommy was not happy. He leaned forward and smelled my hair. It wasn’t a big thing. But it was what I needed to remind me that this is not the life that he would’ve chosen either.
If he could, he’d have chosen to be normal. Whatever that is. He would’ve chosen to be outside playing basketball with the neighbor boys who are his age. He would’ve chosen to have the life his cousins both have. Dreaming of college, planning his future away from his parents. Leaving the nest. Planning Prom and which girl he would ask.
Perhaps he would be deciding which college to choose from. Maybe he would be a sports star or a brainiac. Or both.
But this is the life we were given. This is the life we deal with every day.
-We change bedsheets in the middle of the night for our teenager. We do a ton of laundry.
-We read tons of Dr. Suess books and listen to Laurie Berkner every day.
-We feed him every meal. Every snack. We make sure he doesn’t choke on his food. Every time he eats someone has to make his meals. Someone has to be with him.
-We help him walk. We make sure he doesn’t fall or are there to catch him if he does.
-We keep him occupied and happy. He always has to have something to do. He doesn’t get any time to just sit and think because he would just fall asleep and then get his days and nights mixed up and nobody wants that.
-We administer medications every day. He is unable to do any of this on his own.
-We wake up and take him to the bathroom three or four times a night and any time he has a nighttime seizure. Typically, these happen at least once a night.
-We bathe him. He cannot wash himself.
-We help him wash his hands each time we take him to the toilet.
-We wake him up every day. And sometimes I wonder if he’ll still be alive when I go in to get him.
-We wheel him around out in public because he doesn’t know how to do it himself. He cannot steer around obstructions.
-We decide everything. He can make no decisions on his own, other than to choose his snacks and those are from two provided options.
-We dress him every day. He has to wear overalls now because he can’t keep his hands out of his pants. The joys of having a pubescent toddler who is man-sized.
-We have to shave his face for him. He’s 15 and has a better beard than some men.
So, you see, this is not the life either of us would’ve chosen. But it is the life we were given. We were given to each other for a reason. We don’t often lament the life we are missing, but sometimes, it’s important to lay it all out there. My well-meaning friends say things like, “You were given this special child because you’re a special person”.
Just no. I’m no more special than anyone else. I only do what I have to do for him. Do you think for one minute I would do any of this if I had a choice? I don’t. I do the things I do for him because I have no other option.
“I could never do what you do.” Well, I used to think I couldn’t do it either. But guess what? You get up. You do the damn thing because your child needs you to do it. There is no one else to do it. The PCAs you hire quit. They move on to other jobs. They leave. They take days off or don’t show up at all. You have to do it.
If you’re lucky enough, you have a partner in all of this. I am blessed that my partner is the most amazing dad and when I say that, it’s not a platitude. He really is amazing. He doesn’t complain. He doesn’t say he’s had enough like I do. He does all of the things I listed above and does so with a smile on his face most days. It’s tiring. It’s exhausting. It’s downright miserable some days. But he does it. This is not the life most of our friends have. They have NT kids who meet their milestones and continue to develop normally.
It’s hard to not have that Mama meltdown. They happen when we least expect them. The only way to get out of it is to remind yourself that there is a reason for this life. You love your child and he loves you, too. As his Mama, you will do what you have to do to give him a happy life. And you just keep doing that until you get through the pain of the what ifs and the what could have beens.