“Time is free, but it’s priceless. You can’t own it, but you can use it. You can’t keep it, but you can spend it. Once you’ve lost it, you can never get it back.” – Harvey Mackay

Time matters to each and every one of us. As children, the school bell rings at a certain time. The teachers only allow so many tardies before having a parent/teacher conference. As adults, we need to arrive at work by a certain time, or we will likely need to face our boss. Punctuality is important to most of us in at least one aspect in our lives.

When my kids were in middle school, they had braces. With braces, they needed to have them tightened on a regular basis at the orthodontist’s office. The office was not that close to their school, so in order to get them there on time – even for the last appointment of the day – I needed to pick them up from school early. Each time, I had to face the wrath of the receptionist in the dean’s office. School is very important to my family, which is why I chose the latest appointment I could. I had to consider the traffic, and I always picked them up at the last minute. Either I picked them up on time, and made it late to the ortho’s office, or I picked them up early to make it on time. In order to manage our time, we need to prioritize, and make the best choice we see fit.

As a working mom, when going to work, I need to gauge what time I need to leave based on the day of the week, traffic, if I have a meeting first thing, etc. Some mornings I get thrown a monkey wrench. One of my kids could say they are not feeling well. I have to take a break from my morning routine to assess this illness. I might wake up with a sinus headache, and have to muddle through my routine, hoping that through the haze I can pull myself together enough to be focused at work – and on time. In order to be on time, we need to be flexible for the unexpected, and be able to adjust our normal routine.

Just last month, my daughter, Bella spent 5 days in the hospital due to a big cluster of seizures. She recently graduated from an adult transitional school, and she has begun working with people that work for the state to help her find a job. This is a great benefit in Oregon, and I am really hoping it pans out the way they say it will. But I digress. I have some venting to do.

Bella does not have seizures very often. But with her history of having seizures that can last up to six hours long, if she has one breakthrough seizure, we usually wind up in the hospital. She has never experienced just one seizure. The first one is like knocking down the first domino, and they just continue to fall upon her until we make medication adjustments (meaning we increase at least one of her medicines she takes).

The increase in medication makes her drowsy. The seizures themselves make her drowsy. This last hospital stay was typical, where she basically slept for three days once we were able to stop the seizures. We brought her home, and she was still groggy. We like to come home as soon as we can, because nobody can rest well in a hospital. There is constantly some kind of commotion.

She came home, and she rested for the next few days. Bella called her job coach to let them know she was okay, but she had been in the hospital. I have done a pretty good job at removing my helicopter mom hat, and I have encouraged her to handle this job search thing with the coaches, while I take a back seat.

I had not heard much, and I assumed the agency was just taking their time in going on with the next step. About four weeks after her hospital stay, I received an email asking if she had been given a release note from her neurologist yet. I had no idea they had been waiting for one! They never asked Bella for one, and this was the first I had heard of it. I was kind of upset.

When I let the agency know that she was fine, and I would have gotten a release note two weeks prior, the response I received left me fuming. I was told “with my other clients the neurologist usually waits 30 days to make sure the medicine is working…” I was floored.

Epilepsy is so variable with each and every person. Bella has lost so many days in her life due to seizures. To take days away from looking for a job, which she is very excited to begin, is just downright mean. The medications take two to five days to be in her system completely. We did not add a new medication, we simply went back up on the one we had been trying to come off of. To assume that she would need to spend 30 days doing nothing, and not getting her future started was not fair, and possibly on grounds of discrimination, as far as I am concerned. I understand the agency needs to protect itself, and requires a doctor’s note. However, the only reason they need that note is so that they are not held liable.

The thing is this: seizures are unpredictable. Bella went for one and a half years without any. She very well could have had one at a job site with them, and she still might. With the number of days and weeks she has spent in hospitals, and taking too much medication, she has lost enough time. Bella’s time is important to her, just like time is important to the rest of us. The next time you’re in traffic on your way to something important and there is a car accident that will delay your arrival, consider turning around and staying home for a week instead. Is that really an option? Or will you plow ahead, maybe with a new route, and make it to your destination later than planned?

Personally, I choose to plow ahead. Obstacles may slow us down, but we do not let them stop us. Seizures stink, and they have taken enough of our time. We refuse to let them change our course entirely.

 

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