The idea that a new year is a clean slate is just that- an idea. While you can find comfort in it being a new beginning of sorts, it doesn’t mean every problem you ever had just magically disappears. But yet, I find myself happy to say goodbye to 2022, and all I can do is pray that 2023 will be better.
Although we all have the choice to decide that certain things will be better. You can decide to start working out, eating healthier, find a new hobby, get a better job, or even just deciding to be kinder to yourself. But there are things out of our control, good and bad, that can happen at any moment. Even though we’ve known about Ian’s tumors for 3 and half years now, it never once even crossed my mind that they could hemorrhage. I was in no way prepared for what 2022 threw at me. But are we ever prepared for what life throws at us?
Not including his outpatient therapy appointments, Ian only had one doctor appointment this past week. This week’s visit to Children’s Hospital was to follow up with neurology. We saw a new doctor this time around. I think we saw him while Ian was in the PICU, but we met so many people that I couldn’t tell you for sure. But he and his nurse practitioner were both very thorough and very kind. The doctor actually even gave Ian a little toy. I don’t know if he normally does that or if it was something he did for Ian because of everything he went through, but either way, it was a very sweet gesture. There wasn’t a lot to report with this visit since we just saw the brain clinic. We did ask them about adjusting his one seizure med from 9 mL to 10 mL for a couple of reasons. One was because the school has told us that Ian had a starring spell at school on two occasions since going back. While starring spells can be harder to differentiate between seizures and kids just not paying attention, going up on this medication means we can get it in pill form. We currently have the liquid version, which Ian takes, but it can be a bit of a struggle. He does much better with his other medications, which are all in pill form. This just makes medicine time slightly easier for everyone.
We also had a meeting with Ian’s school on Friday. There are concerns with Ian being back at school, and it was decided that the best thing for him is probably to have a one-on-one aide to assist him. This would be a wide range of things from just keeping him on task with his schoolwork to helping him maneuver around so that Ian gets more opportunities to walk and be out of his wheelchair. The meeting was helpful in understanding the school base setting versus home or even outpatient therapy. It seemed like the school had the same goals we did though: to allow Ian to be in a school environment while also keeping him safe. We can’t expect one teacher to have their eye on Ian while also tending to the other kids. Not just other kids, but also not-typically developing kids. Ian is in what we call a hybrid model at school where he spends half his day with the “typically developing” kids and the other half in the life skills classroom due to his Autism. But with that, this means he is in a classroom with other kids with Autism, or some other kind of developmental delay that requires them to also need extra help. I think the school appreciated our understanding on this. It was easy for me to get off course and expect things to be a certain way for my kid, but it wasn’t a realistic expectation on my end when he isn’t the only kid there. The school decided to try to get Ian a one-on-one nurse to be with him throughout the day. It was quicker to find a nurse candidate than it is to find aides these days. We are really appreciative of the school’s willingness to try this approach to get Ian back in school full days. He still only goes on Tuesday, Wednesday, and Thursday for half days, but him having a one-on-one would allow him to go full days. And this can still be adjusted in the future if need be. Ian did have a brain injury just a couple months ago, and it can take a year to fully heal from it. But he’s not sleeping throughout the day. He’s awake, alert, and so we want to see how much he can handle. If he shows signs that it’s too much, then we adjust his schedule again. The said candidate should be coming to the school on Tuesday to meet Ian and decide if they want to take the job or not. Fingers crossed they do. We are really grateful that the school seems to want Ian to succeed as much as we do, and we couldn’t be more thankful for that.
This journey has been… a lot… to say the least. We get told all the time how strong we are, how admirable parents we are. These situations force you to face things you never thought you could. I never once thought I could deal with this. But we all have our breaking point.
Friday night, I reached that breaking point. There doesn’t always need to be a reason, an event, that happens to reach this point. Sometimes, it’s unexpected. Out of the blue. I was fine. Until I wasn’t. I started thinking about Ian. Where he is now. Where he could go in the future. Where he was before his hospital admission. And it was like a light switch. All of a sudden, I felt like I was, in a sense, grieving my child. While he is here with us, and we are so blessed for this, he’s not the same as he was before. He used to love big movement activities and being rowdy. He loved wrestling with his dad, throwing pillows, just being a super active little boy. Now, he says no to these things he once used to love so much. Videos he used to love and laugh to, he no longer does. The little boy I had before September 15, 2022 seems to be gone. I allowed myself to feel these emotions. I validated my own feelings. And felt what I needed to feel. And then I picked myself off the floor, dusted myself off, and faced it head on. (Let’s face it, nothing anyone would have said really would have helped me while I was in that state.) I realized that this may not be forever. He could still be healing, afraid to do some of these bigger movements. And while he doesn’t find certain things enjoyable anymore, he is finding joy in other things. And that’s what matters. He’s alive. He’s capable. He’s our baby boy.
While you’re busy looking back on the past on things you miss, or into the future to what you hope to be, don’t forget to be grateful for where you are right now. Be present in the moment. Because, after all, this moment will soon become a moment of the past that you can’t get back. Make it count.
