6.30am. I get Tegan to pee on a testing strip to check her ketone levels. This can be challenging because it’s usually around this time that she starts screaming for a TV show. The answer is always “No!” because I don’t want my other kids to get in the habit of watching TV in the morning before school. Goodness only knows it would be easier to put the show on, but I am not willing to make a sacrifice for her that impacts my boys, negatively. This is also the point where Tegan gets dressed. Let’s just say, that can be a party!
7.15am. Tegan’s nurse arrives. I have been documenting my daughter's stats throughout the night and morning, so I can do the medical “hand-off”. Then they head off to her special needs school together on the school bus. Her nurse has to be on the bus with her in case of a seizure or tantrum, both of which can be dangerous for Tegan and the bus driver. This is one aspect of having a special needs child that many people might not understand, but I don’t like to take handouts (such as the school bus). It makes me feel guilty, but I really don’t have a choice, as I have two other children in different school districts. In fact, the guilt is pretty much omnipresent. From feeling guilty that I do too much for Tegan and that my other children will be negatively impacted by that, to feeling guilty that I don’t do enough, there is a constant underlying emotional pressure that is invisible to the outside world.
7.45am. I take James to school (Chris gets dropped off at his school after surfing with his dad) and jump straight into work mode. While I work the entire time the kids are at school, I have to periodically jump on calls to schedule Tegan's doctors appointments, get medications refilled, or fight with the insurance company over yet another bill. Just today, I had six calls during my work day to the Neurology department. This obviously impacts my work load, so you’ll often find me up until midnight catching up on deadlines. That probably sounds crazy given the rest of our daily schedule, but our expenses for Tegan are astronomical, so work is a non-negotiable part of life.
2.45pm. I pick up the boys from school, then Tegan and her nurse arrive home shortly after. Her nurse gives me her medical download from the day, which is usually the point at which my youngest son decides he wants to tell me all about his day. This gets really stressful, as it’s so important I understand Tegan’s health status that day, but I know James is just trying to get his mom’s attention and feel important too. It can lead to some negative behavior. If Tegan is medically stable, we give her a second heart medication before heading off to drop the boys off at their soccer practice, etc. If she’s not, I cancel all my meetings for that afternoon and do whatever is needed to take care of her. Once, her nanny forgot to give Tegan her heart medication, which could have been life-threatening. No matter how organized I am, I feel nervous about leaving her with anyone else when a medication dose is due. I recently heard about the Hero device and I can’t wait to try it out because it would have prevented that situation from ever happening.
5.30pm. Dinner time! We are usually back to the TV demands, and that can lead to an hour or so of meltdowns. This makes it very hard to feed Tegan, because when she has got herself into a tantrum, she will often throw up if she eats. And we can’t use her feeding tube, because the screaming leads to too much air in her stomach. But it’s critical that she gets the right nutrition to keep her blood sugars stable, so we can’t give up. At this point, Chris usually finds some beautiful, big brother way to calm her down -- whether it’s playing his guitar for her or finding some kind of game that takes her mind off her melt down. That’s one thing I will say for a family that has a child with special needs -- children learn compassion on a whole new level. The tantrums are a big part of our life with Tegan, and they are very dangerous for her heart. After years of trying different medications that were so dangerous they were doing more harm than good, we have found we can control them with small doses of cannabis oil, without all the side effects.
7pm. Bedtime begins. I say it begins, because it can take a couple of hours! I can be through three or four books, and Tegan is still wired. It’s tough, because I want to spend quality time putting my other children to bed as well, but Tegan can take a really long time, and I can’t leave her until she is asleep, as she will just get right back up again. Also, I have to check her sugars again once she is asleep and that often means another bolus.
9pm. Most of the house is sleeping sweetly. I can take a deep breath, feel gratitude for another day with my three beautiful children and my husband, and dive back into my work!
* Names have been changed for privacy.
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