Yesterday was another rough day in terms of mental and physical exhaustion for our family. To those of you who have followed our story, you know that we have 3 boys diagnosed with Autism. Through their diagnosis we found through genetic testing that the boys have a rare and serious heart condition called Long QT Syndrome. So with that being said, it’s been a long and exhausting road to figure out how to manage this condition and all the scary realities that accompany this.
Yesterday’s appointment was long and for the twins, pretty miserable for anyone who tried to do any testing on them. The doctors office is just hard for them and they let their presence known…pretty much everywhere they go. I’ll just say if I was a betting person, my money is always on them to put up and win the fight. Unless it’s a necessity, then momma gets involved and gets to wrestle, restrain and hole them down. While the testing that needed to be done yesterday was a necessity, it didn’t change the treatment plan or the fact that they have the diagnosis. That is something that we know for sure, so while it would be nice to get some tests done on the boys, it doesn’t affect the treatment plan. If you are confused by all this, don’t worry, I’m all over the place emotionally, mentally and physically. This is all just so overwhelming.
Yesterday I was prepared that Brody would be soon starting Beta Blockers. But I was not prepared for the twins. I thought they had more time before this happened but as always the plans I envision in my head don’t usually pan out especially in the medical scenario’s.
As I was sitting in rush hour traffic on the way home from St. Louis yesterday thinking and replaying the appointment back in my head, I wondered why this medication regimen was affecting me so bad. Why was I so caught off guard by all this. I mean, I knew that this was eventually going to happen. I had been prepared the first time we met with our doctor. But I think when it happens, it just makes it real. And I kept thinking in depth about how I was going to possibly keep this all straight. They will be taking their beta blockers 3 times a day. The thing that made me almost have a panic attack in the doctors office yesterday was hearing her say that this medication can be extremely dangerous if not taken at an appropriate time. It had to be spaced out more than 4 hours or it can have a very scary outcome. I know what you’re thinking, there are plenty of hours in a day. This shouldn’t be an issue. But what if I think one child took the medicine and he didn’t? Or what if I give Chase the dose on accident that was intended for Peyton? What if I make a mistake because I can’t keep their medication schedule straight? I am human and while I try to be very organized, I AM human.
This scares the living SHIT out of me. I’m just going to be upfront, raw and completely honest. I feel like it all falls on me and I will be the only one I trust to ensure that it gets done correctly. Because I will only be able to beat MYSELF up if an accident does happen. I also thought about how Peyton was the only child that I ever had to keep medication in order for. Now, it was all three. That alone just makes me feel so emotionally sick and sad all at the same time.
The boys have all had these developmental delays through Autism and now all three of them have this new scary heart condition that will stay with them the rest of their life. I know that time will pass and it will be the new normal. I know that we have weathered so many other awful deep valleys and have always come out on top. I know that we will handle this and keep our heads up. We WILL push through. It’s what we do and the only way we know how to cope with the chaos. But excuse me while I have a short breakdown and my brain gets the best of me and the tears flow down my cheeks during the most odd and unpredictable times. Because right now, it just really stinks and my heart hurts so bad for my babies. I wish I could just take this for them and kiss their cheeks to wash away all the struggles.
Please don’t get me wrong, I am so grateful that we found out about this. I am so thankful because the harsh reality is that this is saving their lives and keeping them protected.
But please, please, please don’t tell me that it can always be worse. I am very well aware of what “worse” looks like. I have been there begging God to spare my child’s life as he fought off Sepsis from a simple virus. I have watched all three of my children struggle and work hard every single day of their life as they try to accomplish the most seemingly simplistic task. When you tell someone not to be sad because it can always be worse is like telling someone not to be happy because someone out there is happier. Pain is relative, life is relative and your words go a long way, especially when someone is having a rough time with the season they are navigating through.
I will rise back up, I will conquer this. I know I will because of my track record. It will get better and leaning on God has and always will get me through.
Sometimes I think that I don’t know why this has all happened, why we were handed this storm to weather through? It definitely makes me question these things especially on days like yesterday where my brain was literally spinning and going in a million directions. But the answers are always so clear and I know why this life has been given to us, I know that God handpicked us for this specific situation. I know that our purpose is to help people through our story and provide a light for those who may feel like hope is lost.
We have been assigned this mountain to show others it can be moved.