All the Hats I Wear

Ian had an appointment this past Wednesday. It was with a group known as the brain clinic. This clinic is full of different doctors and specialists that all work together with kids who have had a brain injury to make sure the child is receiving all the support and services they need. The appointment went well- there are still areas we need to work on with Ian, but overall, he is doing well.

But as we were sitting at this appointment, as each specialist came in and went out to get the next one, I realized how many different hats that I have to wear simply by being Ian’s mom. I love being Ian’s mom, and I wouldn’t trade it for anything. But I don’t get to just be his mom. And I think that’s what’s taking a toll on me.

I’ve heard so many times since we’ve been home that I look tired. No matter how much I try to dress up or how much make up I put on, it’s not something I can hide. I’m playing so many different roles, and I don’t have the degree to do any of it. I don’t get paid to do it. He’s my son, of course I’ll do all these things for him. But how good of a job am I doing with things I have no idea about?

I’m his home physical therapist. He has his outpatient PT and his school PT, but all of these people provide us with things to also do with him at home. I realize he needs it, but when I’m doing his leg stretches to make sure his bad leg doesn’t get too tight, how do I know I’m doing it correctly? I didn’t go to school for this. I didn’t get to practice before going out to show the world how it’s done. I was just thrown into it once we got home. Because that’s what he needs from me. They’ve shown us. We have papers that show us what to do. But what should it feel like to me to know I’m doing it right? What if I think I’m stretching him the way he needs, but I’m actually not? And that he’s not getting what he needs at home?

I’m his home occupational therapist. This is pretty much the same as the PT stuff, but occupational therapist do so much more than I imagined. Ian’s OT helps him learn how to get himself dressed and perform other basic hygiene, like using the bathroom or brushing his teeth. Before the hemorrhage and stroke, Ian was learning how to hold a pencil correctly. But this was something I struggled with teaching him. (I’m pretty sure I don’t hold my own pencil the right way.) On top of that, he’s a lefty. And I am not, which presents it’s own set of challenges when trying to your child something.

I’m also his home speech therapist. I talk to him, I read him books. Those were always the basics that I knew of to get kids talking. But Ian repeats exactly what he hears. So, this has resulted in a lot of improper grammer. For example, he refers to himself as “Ian” and instead of saying “I” so the sentence might sound like “Ian wants a cheeseburger.” We have to constantly correct him to make sure he will eventually understand the way he should be talking. He has also struggled with word identification since the hospitalization. For a while, he referred to everyone as “mom” even though he knew/knows I’m his mom and even who the other people are. He just couldn’t identify the correct word/name. It’s gotten better, but it’s still also a work in progress.

Of course, what I can’t forget, is I’m his caretaker. I understand every mom plays this role, but it’s so much more exhausting when your kid has developmental needs and medical issues. I’m helping him get around the house now, I have to make sure he gets all of his medications at the same time every day, I’m taking him to appointments, and checking for seizures or anything else abnormal.

I’m his medical advocate. When I think a medication isn’t working for one reason or another, it’s up to me to get in touch with the doctor and make them listen. As a parent, we know our children best. And while I’ll always take what a medical professional says into consideration, as his mom, it’s still up to me to make the final decision for Ian’s care. I have to educate myself and learn all I can about all of his conditions.

I’m his therapist. Not in the way he sits down and tells me all his troubles. But in the way that I’m his emotional and mental support through everything he goes through. I watch for ques that he’s sad or scared. I comfort him when those times arise. And any mom will tell you, when your child is feeling a negative emotion, you feel your heart break a little. And you would do anything to take that feeling away from them. I don’t want to say this is constantly Ian’s case, but it can be multiple times a week for him. This can be emotionally/mentally draining for me when you throw in me having to deal with my own emotional and mental health.

I’m his teacher. I’m trying to make sure he keeps up with the rest of his peers while also making sure he gets enough time to play and rest and be a kid.

I’m his biggest fan, his cheerleader, his support system. I’m his chauffer, his riding buddy, his personal cook. I’m working to help provide the roof over his head and give him the life he and his sister deserve. I’m the fun parent one minute and the strict parent the next. I’m his punching bag when he’s angry, and I’m there for a hug if he wants or needs it. I’m his tour guide getting him to explore the world, and I’m his security guard, making sure he doesn’t get hurt. I’m kissing the boo'-boo’s, I’m drying the tears, and I’m there for all the laughs and giggles.

So many roles I play that I don’t know how to. I feel like an actor playing all the parts in a play of a script I never even read. But like everything else, we’ll learn to dance through this storm, too.

Today marks 4 years since our cancer journey began. Ian had his first convulsive seizure. His first MRI. The first time we heard there are lesions on his brain. The word “lesions” shortly got replaced with the word “tumors” and life as we knew it would never be the same. Maybe it’s the emotions this day once brought that’s bringing on all the emotions now. More present day emotions, but for the journey that never seems to end.

I started this blog to get thoughts like these out. To have a healthy outlet of my emotions. If you made it this far, thank you for reading. I just needed this week to be a little vent session.

Ian is doing well. And I’ll be okay. We’ll all be okay.

It’s a bad day, not a bad life.

Now that I felt the negative emotions I needed to feel, I’ll make sure to count my blessings tonight. Blessed to be Ian and Gabby’s mom. Blessed to have Ian still here with us.