I haven’t written in a very long time, and this day somehow motivated me to get back. So thank you, rare disease day for bringing me back. But boy, do I wish we had never crossed paths.
The past couple of years have been an exhausting blur, filled with lots of ups and downs, and has depleted my energy for this blog. I know most of you reading this feel the same way. Covid has seemed to put this heavy, life sucking blanket over all of us, but I’m ripping ours off…unapologetically.
We all caught omicron in the beginning of January. Logan was the first, then we all dropped like flies. We had spent the past two years preparing for this, and we breezed through it thanks to having a plan of treatment. We did our part by staying safe, masking, social distancing, not going out much, etc. We started to see a functional medicine doctor who gave us a plan not only for staying healthy and amping up our immune systems, but a plan for when we would get it (because it is inevitable, right?!). It was two years of not missing a day of taking supplements, eating healthy, exercising in some way, and trying not to stress out too much. It was exhausting, and I felt this sense of relief when I saw that positive test result. Kind of like when we found an answer for what was going on with Logan. We knew what we were up against, and were ready for the fight.
But, we are still fighting. Fighting this awful syndrome that takes so much from Logan and our family. Covid life has taught us many things, and made us appreciate more of the little things, and has shown me how resilient and strong Logan really is. Imagine being in so much pain and not being able to tell anyone where it hurts, so badly that your only means of communicating this pain is to scream and attack whatever or whoever is near you. Imagine not getting any relief for days simply because those around you are guessing what it might be. And, your doctors are not answering your many calls and emails. That is an unfair life if you ask me, especially for a sweet little girl like Logan.
This life has made me truly appreciate the medical world that is on our side, but has made me second guess many of these specialists. Just last week I did not hold back in telling one of them how dissapointed I was in their care, or lack of it. Another one let go. I’ve also come to realize that my faith in the medical community is constantly being tested, and there are many “correct” ways to do things, all depending on opinions. Following the science should be easy, but how do you do that with so many changes and opinions? For me, that means constant researching, talking to other parents, praying a ton, and hoping for a cure. Hoping to not be labeled during this rare disease day in the coming years.
As I type this, Logan is scooting around her toy room, pushing a button on her “Beauty and The Beast” doll the exact amount of times it takes to get to Belle singing, “Isn’t this…alarming”. It’s ironic because yes, this syndrome is alarming. But, she pushes it because every time Jack and Wes hear it in the other room they both repeat, “alarming!” in a funny voice that cracks her up…and makes Jango bark. It’s like it is her way of playing with them, a way she has figured out how to communicate in her own way. Alarming. That would be one of the top 3 words I would use to describe these past couple of years.
But today, we are no longer under this blanket. Pitt Hopkins has already taken so much, and I will not let Covid take any more. Once the mask mandates are lifted, the boys will be mask free (Logan has not worn one this entire time). We will start going back to in person therapies, start doing more in our community, and start living life again.