I broke a promise to Erynn yesterday. I didn’t mean to. I wasn’t thinking when I said it. I certainly should know better by now. I said, “I’ll be home by bed time and I’ll tuck you in. I promise. ”
I lied. What should have been a very early morning drive up to D.C. for an MRI, turned into a day long fiasco of waiting and hurried phone calls to organize being admitted to the hospital back home. I woke up at 3 am, drove four and a half hours, waited for five hours, then drove for six hours to our hospital in Norfolk. I didn’t go home. I didn’t take Erynn to dance or hear about her day. I didn’t tuck her in.
I should know better.
Our world is so upside down. Everything, anything, can turn into a hospital stay. Emotionally we are all raw. There isn’t anything left to give to the mundane. So, when my child is having a breakdown because Matthew has an appointment, yeah, I forget that I can’t make promises anymore, and I promised that I would be there for her, so that she wouldn’t be afraid and could fall asleep. At ages four and six, Ruth and Erynn know, even if they don’t have the words for it, that we aren’t guaranteed a tomorrow with Matthew.
And here is the dirtiest little secret of all… Sometimes, we find ourselves thinking “maybe this is it for him” with a hint of relief. Not that we don’t love him. Not that we don’t want to keep him forever. But because there is no end to this exhaustion and our bodies are desperate for relief.
“Why can’t you come home? Why can’t you just be my Mom!?”
That’s what she said to me when I broke my promise. Why can’t you be my mom. And she broke my heart.
I can’t just be mom because we have Matthew and we have no support network. I have a son whose medicines need to be given at the perfect time, who is in almost constant pain, and who spends a lot of time in the hospital. Someone has to take him to the hospital. Someone has to stay there to make sure his medications are given on time, to make sure that his very complicated medical history is clear to every new face that walks through the door (and its a pretty steady stream), to advocate for what he needs and doesn’t need, and to read his subtle signs of when he’s in pain or about to throw up. But, if I am at the hospital, that means Rusty isn’t at work. He’s used more than double the vacation that he’s earned this year. 90% of that leave was spent taking care of Erynn and Ruth while I stayed at the hospital with Matthew. We are so grateful to his work for being understanding and accommodating , and also realize that it can’t last forever. They are paying him to do his job, not be home with his kids.
We are so drained that a clogged sink makes me break down sobbing; a broken ID card makes Rusty want to break something. Honestly, those little mundane things are the only times that we feel free to let our emotions out. There just isn’t any other time to do it.
So, to answer the questions: why can’t you just be my mom. Why didn’t you respond to my text/phone call/ email? You don’t have 30 minutes to go for a run? Will you be coming to (fill in the blank)? Because I don’t have any relief. Because I haven’t even been on a three hour date with my husband in years. Because my days look like this: wake up, get dressed while getting Erynn and Ruth dressed, pack lunches while making breakfast, run them to school, run Matthew to therapy, pick up Ruth, spend the next hour and a half trying to clean while scheduling appointments or talking with doctors about the latest problem OR quite often it is spent at a doctors appointment, pick up Erynn, give her a snack and changed her for dance, leave the house 30 minutes later, take care of Matthew / pray he doesn’t puke all over the dance studio, rush home. Rush through dinner and baths. Savor bedtime stories, prayers and good nights. Take care of Matthew until sometime after midnight. Crash for 4-5 hours. Repeat.
This life can’t be sustained on our own. We can’t physically keep this game up for much longer. We need an opportunity to have a normal few hours. We need someone to say “hey, I’ll use one of my vacation days so that you don’t lose your job, Rusty” or “Hey, I will come play with the kids (and yes, I have three of them) so that you can do (anything other than struggle to keep my head on straight).”
So, I’m sorry. I apologize for not getting back to you. I apologize for breaking my promises. I apologize for being late or not making it to your gathering.
I’ve been busy trying not to completely lose my mind.