Well, it’s been a very long time since I have written a post in the middle of the night. But, here I am! Lyra woke me up around 2:30am and I discovered we were feeding her bed instead of feeding her.

Feeding the bed: A term we use when a detachment happens somewhere between the tube fed person, and the bag, resulting in covering the bed in their food, instead of feeding them.

So, instead of giving Lyra an extra blanket (what she normally wants), and both of us heading back to sleep, my husband (Happy Birthday!) and I ended up changing her and all of her bedding. We didn’t start a load of laundry because that would wake our 4 year old, and I do not need both kids awake in the middle of the night. Now, Lyra is wide awake and still has about an hour an a half left on her night feed. That means I will be up for the next hour and a half. I am grumpy and tiered. I also can’t help but think about few comments I got this week from other parents at school.

Now, let me start by saying that most people recognize they have no idea what my life is like, and therefore don’t often comment on what I am doing as a parent. But sometimes, people just can’t help themselves, and they have no idea how devastating their words can be. I know that many of you will think, “they have no idea, so don’t let it get to you,” or “they meant well, so it’s okay.” But that’s not how it feels on my end. I already feel so judged and scrutinized by how we care for Lyra, simply because she has such a large (and necessary) team of professionals that help keep her stable. To have other parents comment and judge, without knowing anything, is just…… exhausting.

The first incident this week happened at pickup. I was talking to another mom like me, and we were commiserating about pharmacies and how hard it has become to get certain medications refilled. Her daughter is like mine and requires numerous medications. In the conversation I mentioned how expensive over the counter laxatives have become. A mom, who does not know our children, chimes in, “well, why don’t you just feed her prunes.” …… I filled her in on how many medications Lyra is on for her GI issues, and the fact that she has 2 GI doctors on her team. In my head, I kind of spiraled into all of the things we have tried since Lyra was a newborn to help with her constipation. It’s still bothering me 7 days later. It may seem like a harmless, and possibly helpful, comment. But it’s really not. It’s judgemental.

The second comment happened just the next morning at drop off. Yay me! For context, I drop my kids off 10 minutes late to school every day. This has been pre-approved and is due to the fact that the school does not have adequate parking to accommodate all of the children with mobility needs at this school. So, there is a group of us that drop off just after school starts so that we can use the bus lane, right in front of the school. Lyra is sent off with her para, and I walk Ranen over to his preschool classroom and sign him in. On this day, as I was walking towards his classroom, I saw another mom walking away who had dropped her daughter off a few minutes late. This is a mom I have spoken to before, and she knows my situation. As we greeted each other, she commented, “It must be nice to be able to take your time in the morning and not worry about getting your kids here on time.” Take my time? She has no idea about all of the things we have to do to get Lyra out the door in the morning. Also, I am not dropping my kids off late because I can’t get my act together in the morning. I am dropping them off late because of the schools shortcomings.

What I wanted to say was, “Fuck you. You should come spend a morning with us.”

What I did say was, “well, there are trade offs.” It wasn’t quite as satisfying, but I was glad I thought of something to say on the spot.

Both of these events have been sticking in my brain all week. These mom’s could have simply said nothing and stuck to the normal “hellos”, “good mornings”, “have a good day”, or something along those lines. Instead, they had to point out that my parenting experience is so different, and their assumptions that part of it is due to my failure to consider what most parents have to do. Like I said, parenting is hard for everyone and it isn’t a competition. There is no trophy. But it’s also important to recognize and respect the fact that someone is going through something different than you are. And since you probably don’t know the ends and out, it’s better just smile and say “good morning”.

On that note, it’s almost 4 am and Lyra’s feed is almost done. Time for a few more hours of sleep before our day starts back up at 6am with her first round of medication. Good night!