Scary January

January is a difficult month for me. Reviewing our "health track record," it's unfortunately our most unlucky month, and for the last few years, I can feel myself get tense the days leading up to the new year, lasting through Scary January. It's a reminder of all the scary times we have lived through in Januarys-past. And by scary, I mean the worst possible scenario that any parent can face. We have come too close to losing Avery more times than should be possible, and many of those times fell during this month. To anyone else, it may seem like time would heal these fears. But as her mother, and at times the only eye-witness to many of these past events, I think I'll be forever haunted during this time. (Not to mention all the times in between.) Three years ago today, on January 16, 2015, I was thanking God for letting me bring Avery home. I found her seizing and unresponsive in her bed, and after a scary ride to the ER, they found that her blood sugar was at a critical 17. You never forget a doctor telling you what would have been if you didn't find her when you did. That scary day also began our journey with epilepsy, which has by far been the most complicated and difficult of Avery's diagnosis. The very next January (2016), we were rushing Avery to the ER yet again for status epilepticus, which as you know would end up to be her longest and most complex hospital stay to date. The effects of that time are with her to this day, and although she has been fighting like a champ, the struggles are constant. And one of those struggles is my own. It involves getting through this time of year without totally losing my mind.

It obviously helps that we have been incredibly fortunate over the past year, as well as now, in the midst of one of the worst reported flu seasons. (I type this as I fervently knock on wood.) But when you live life like we do, you are always waiting for the other shoe to drop. You are peeking your head out from under the covers, waiting for the monster to jump out and grab you. And there are a few monsters. Even though Avery has been doing so well, and we haven't made a trip to the hospital in almost six months, that doesn't mean there is less fear. Because we know that it's inevitable. She is going to catch something again, she is going to have another medical issue. So the question isn't 'if,' it's 'when.' And that has been a heavy burden to bear at any time, but even more so when you are reminiscing this unlucky time in years past. Do not mistake this for negative thinking or hopelessness. This is realistic; albeit, enhanced by anxiety and a little PTSD in January, but realistic. While I am grateful for every single healthy day that Avery lives, and I love nothing more than witnessing her grow, learn and progress as much as she has each day since her last major issue, I know that there will be another monster, and it's impossible to ignore that.

What I am continuing to work on each day is living with these fears, while not letting them take over. I know they do more often than I'd like, but I also know that in many instances, they are warranted. Like the aforementioned flu season. I am terrified to leave the house during seasons like this, because as most of you know, if Avery catches the flu, we are almost certain to be heading to the hospital. But I see how well she does when she spends time at school, and doing the things she loves outside of our bubble at home, so my intuition tells me to let her go. I rely on that intuition, and her support at school to keep her as safe as possible. Oh, and Clorox and Purell... I rely on them A LOT. I should buy stock in those. The flu is a unfortunate part of life that is made scarier by having complex medical issues. We know that it is impossible to completely avoid, but we do everything we can to reduce our risk. So never be offended if I decline an invitation during flu season, or if I'm constantly wiping the kids with anti-bacterial wipes. It's necessary, and ensures our germs stay contained as well. 

Back to Avery doing so well... She really is. I often pinch myself because it's incredible to look back at where she was three years ago and two years ago to where she is now. Talk about proving everyone wrong. I am hopeful for her future, but vigilant and realistic. I always strive to take one day at a time, because we know that looking too far ahead is more overwhelming than beneficial. 
Everyone stay safe, stay healthy, and if you're sick, please try to stay home <3

January 2016, on a rare alert moment between fighting constant seizures