We want our children to be happy and healthy. We want them to be wild and free. We want to preserve their innocence in a world that is littered with hate and tragedy. We want them to keep their adventurous spirit and always see life with bright, unknowing eyes. After receiving the second most devastating news of my life, I am grappling to see how these hopes will unfold themselves in my son’s life. Thursday, exactly 10 months and 10 days after his Daddy’s passing, the bomb was dropped…Sawyer’s genetic test confirmed he possesses the gene for Tyler’s heart condition.
For those of you who do not know me or my situation, here goes…
On November 19, 2015 my husband, Tyler, passed away very suddenly and extremely unexpectedly. He was 29 years old, healthy, athletic, a damn good husband and even better father. My world collapsed in an instant and has left me picking up the pieces of this shambled life for Sawyer and I.
When I think back on the last year and everything that has transpired, I wonder how in the hell I have done it. Prior to Tyler passing, we were in the midst of selling our home and purchasing another one with plans of expanding our family. When everything happened, I was past the point of being able to pull the plug on the sell. That being said, 6 six weeks after burying my husband, I had to pack up our entire life, put it in storage, and move an hour and fifteen minutes away to live with my ever so gracious in-laws.
It was entirely too much change to process. Even now, as I sit here typing this, I think “did this truly happen?” Sometimes it feels like a dream or someone else’s life story.
“I still find myself having to physically and literally say aloud
‘this is your life’”.
The first bit of information as to what happened came from the state medical examiner. Upon autopsy, she found that Tyler had an enlarged heart. After several gut wrenching months of waiting, they finally deemed his cause of death as hypertrophic cardiomyopathy (HCM). At this point, our son’s pediatrician set up a referral with a cardiologist as a precaution. Momma’s- you know the fight our children put up just to have measurements taken for a wellness visit, well imagine holding down a 14 month old for two hours while the medical team attempts an EKG and echocardiogram. Yeah, that was a blast. By the end of the visit, I was informed that his rhythm appeared normal and heart measurements were exactly as they should be. And, as to not completely be the Wicked Witch of the West, Sawyer commemorated this visit with his first sucker!
Now, since HCM has genetic implications and structural changes within the heart usually do not take place until adolescence, it was suggested to proceed with the genetic testing. In what could be an extremely long story (because nothing is ever just straight forward in my life), I will say this- we were eventually paired with a genetics counselor, whom may I add has been completely and utterly A-MAZ-ING! She went through the process of having Tyler’s blood sample (saved from the medical examiner- THANK GOD) sent for genetic testing. Rather than only looking for genes known to cause HCM, she included a larger panel that looked at a much wider array of heart issues for a better chance of finding something out of place. The gene found with a mutation was the SCN5A
and to complicate things further, Tyler is only the second case of this particular mutation to be found…
“Sawyer now being the third.”
Traditionally, HCM and arrhythmia’s have been treated as two different conditions, with the exception that HCM can cause arrhythmias and those are typically triggered during strenuous activity. A couple of things always seemed out of place- Tyler played basketball, as he always did a couple times a week, and was seemingly perfectly fine afterwards. I woke up at 1:00 in the morning to him struggling to breathe and unresponsive. With HCM being the “definitive” answer from the medical examiner, it never explained why it happened in his sleep rather than while playing basketball and why he never had any indications whatsoever (heart palpitations, shortness of breath, etc).
This genetic test revealed the answer…although they do not have a vast amount of information on it, they do know this- it is an arrhythmia condition that is triggered during rest/sleep. And just to add to the confusion, these findings go against what they have always believed. Tyler’s arrhythmia condition cause his HCM, not the other way around.
“So, what does all of this mean for my son? You want the raw truth? The truth is, at this point, I have more questions than answers and more worries than assurances.”
It’s horrible enough that my son has to grow up without his father, but now this will be on his plate. The first two days after receiving the results, I cried every time I looked at him. That night, he snuggled up on my lap and I could feel his precious little heart beating and I lost it. All I could think is “how can this be the answer?”, “how much more are we supposed to take?”, and “what in the hell did I do to deserve this never ending shit storm?”. Words are powerful and so many times those that speak them never know the impact they have on someone’s life.
After my two day inconsolable pity party, I came across this quote…
”You don’t have a right to the cards you believe you should have been dealt. You have an obligation to play the HELL out of the ones you’re holding”. Wow…
What are we going to do next you ask? Well, we are going to put our big girl panties (and big boy pampers) on and take all the appropriate steps that need to be taken. What are those steps you ask? The answer is, I’m not exactly sure. But, what I do know is this- we have an amazing support system and my son is loved beyond measure. Yes, we want everything perfect for our children, but there are endless possibilities of what we cannot control. However, what I can influence is how our situation shapes Sawyer’s life. As a parent, that is scary as hell, but I refuse for him to grow up thinking/believing we are a victim of circumstance. Not to mention, that is the very last thing his Daddy would have ever wanted.
He lived his life with sheer honor, pure determination, and an untouchable love for his family. I want to honor those attributes and the best way for me to teach Sawyer about his Daddy is by living them out and instilling those values in his son. Do I do it perfectly every single day? Heck no. Do I lose my mind some days? Heck yes. But that’s part of this process and I’ve learned that it’s ok. I have also learned to extend myself a little grace and that has been a tough one. My life certainly isn’t where I expected it be at the age of 30, but I’m trying like hell. Not just for me, but for the most precious thing on this earth to me, my Sawyer Truman.