Juggling It All

I don’t know how people do this. I don’t know what I’m doing. Most days I just feel like I’m failing. It’s the only emotion I can pick out of a thousand others that I’m experiencing at one time. The other days, I feel nothing at all. I’m just completely numb. There’s a lot to juggle. And I’m just tired. Drained. Exhausted.

Ian’s seizure-like episodes seem to be happening again. He’s been on the same dose of medication for about a year now, so this isn’t completely unexpected. As Ian grows, as his body “outgrows” his medicine, there will be periods where we just need to adjust them. But it’s still a stressor for me. When I say “seizure-like” episode, this is because we’ve never been able to definitively confirm Ian’s starring spells as seizures on an EEG. But it’s pretty clear when you see one that something isn’t right. And that’s the only real explanation for the episodes. This time around, we are increasing one of Ian’s three seizure medications, I have to schedule for another overnight EEG, and we have to follow up with neurology. This process typically requires me to mark down what’s happening during the seizures, how often, what time of day, what Ian was doing beforehand, how he acted afterwards, and if anything else has been out of the ordinary for him. I usually record every episode on my phone, if it’s long enough for me to capture it. Just to show EXACTLY what we are seeing at home. We started him on the higher dose over the weekend, but it seems to be doing maybe too much. He’s been napping during the day, and today he slept in this morning. It’s hard to find that balance of keeping his seizures under control, while also giving him the best quality of life.

Ian’s routine 3-month scan is also coming up at the end of this month. Scanxiety, as we call it in the cancer world, is something that has an effect on me for the month leading up to it. My sleeping gets worse. My general anxiety gets worse. I lose motivation to do much of anything. It takes a lot out of me.

We’re also now having trouble with Ian attending school. Because of Ian’s daily personal and medical needs, he has a one-on-one nurse attend school with him to help keep a better eye on him and ensure he is safe throughout the day. The issue is that there is a staffing shortage, and we are having a hard time getting a nurse for 5 days a week. (Technically, 4 and a half days because Ian has outpatient physical and occupational therapy on Friday mornings.) There was a period of time at the beginning of the year where we couldn’t get anyone at all, and at the time of this post, Ian has missed 13 days of school out of the 6 weeks school has been in session. It’s incredibly frustrating. Ian thrives on consistency, and the only thing that seems to be consistent for us is inconsistency. There’s no routine for him at all at this point. I give a lot of credit to the school for their role in Ian’s progress since his brain injury. But if Ian isn’t going to school, I worry how this will continue to affect him. At this point, I can’t even compare him to his peers because it’s simply not fair to him because he has been unable to attend school the way he should be. Instead, I compare him to where he was last year. Even last month. I worry this will hinder Ian’s progress, and while it seems like there’s so many other options and avenues we could go down, there’s also not a whole lot I can do about any of it. We requested another meeting with the school, and I am praying we are able to work something out so that Ian can continue to have these opportunities.

I have to be my son’s mom, be his nurse, his teacher, help him with physical and occupational therapy, speech, toileting, behaviors, cognitive abilities, etc. I still also have a daughter who needs me. I still have the other basic mom things that I need to do for both of my kids. I still have a house to clean. I still have a job I have to show up for. I still have to take care of myself. But how can I even begin to juggle all of this?

I don’t know what the answer is. I know what needs to be done, but I know something has to be put on the backburner to get it all done. That thing is usually caring for myself until I run myself dry. I can’t pour from an empty cup, but what fills up my cup to begin with?

“Alyssa, why don’t you ask for help?” Because to me, that says I can’t handle it. And, well, I can’t, but I don’t want anyone to know that. (Even though I just typed that out for whoever to read.) If I can’t handle this, I’m a failure. A failure as a mother, as a caregiver, as the person I strive to be. And if I’m failure, then I am worthless. Or so my mind tells me.

I would never say that about someone else. If someone else was in my shoes, and it was I on the outside looking in, I know what I would say to them. What I would suggest for them. So why don’t I do that for myself? Why don’t I say that to myself? Why would I treat myself differently than I would others? Why don’t I give myself the same love and compassion I do for everyone else?

I don’t have the answer to any of these questions right now, but I have a feeling, in order to juggle it all, I’m going to have to do some shadow work.

As we navigate these next few steps in our journey, please just pray for us, whatever that looks like to you, to have the guidance and strength to make it through this part of the storm.