My son, Chase, passed away during his afternoon nap at daycare. An autopsy later revealed that he had two congenital heart defects (CHDs). About two months after my son died, I took this (then) newfound knowledge and got on a conference call with a national organization that supports children born with congenital heart defects. It was an introductory call for people who were interested in learning more about the organization and how they could get involved. There were about eight women on the call. Before the leader of the call commenced their presentation, all of us newbies were prompted to introduce ourselves and provide some insight as to why we were interested in getting involved. I didn’t feel like going to the head of the class on this one, so I let the other ladies go first. One by one, they all spoke about their children who were living with heart defects. I heard of numerous surgeries, amazing hospitals and medical teams, and extremely thankful parents. Then it was my turn.
I’d like to think I’m usually an attentive person, but while the other women were talking, part of me was busy giving myself an internal pep talk. “You got this. Just stick to the facts and maybe you won’t cry.” I clearly suck at pep talks. I got a few words out and then my voice started to crack. I’m not sure what else came out of my mouth and it doesn’t really matter, because I don’t even think it could have been defined as a translatable language. It was sobbing, mixed in with hyperventilating, mixed in with an occasional apology for being a hot mess (that’s me still trying to be attentive). It took one phone call to realize that I wasn’t ready. I needed to wait. I needed to take some time to heal and then I’d give it another shot. It’s been four years and I’m still not ready.
There was one big difference between me and the other moms on the phone call that day. Their children were living and mine was not. They were fighting to keep their children alive and I was fighting through grief. I couldn’t understand yet what it meant to keep my son’s memory alive, because I still couldn’t believe he was gone. At times, I still can’t believe he’s gone, but I’m not weighed down by these thoughts of disbelief on a day-to-day basis.
I often tell myself that maybe we didn’t get to fight for Chase’s life, because he was always meant to be our Angel. This is what I would call a big fat coping mechanism, and I’m going along with it – for the most part.* The other part of me is just plain angry that I didn’t get to fight for his life. I would have put up one heck of a fight. I would have thrown down enough fight to beat Mike Tyson in his heyday – over and over and over again.
Late night talk show host, Jimmy Kimmel, just announced that his newborn son was born with severe CHDs. Jimmy’s family is starting the fight of their lives and I am wishing nothing but the best for their little heart warrior. I am also glad that Jimmy Kimmel can use his entertainment platform to give voice to the 1 in 100 babies born with a CHD.
I can’t provide that voice. Not because I’m not the host of a nationally recognized primetime show. Although that wouldn’t be a bad start. But because I’m reminded that I didn’t get to fight and that gives me an anger and sadness that probably shouldn’t be broadcast to a mainstream audience. At least not one that’s looking for comic relief.
So for now (and the unforeseen future) I will give back in my own ways. This blog is my biggest leap in that direction. I don’t know what it feels like to fight for life, but I know what it feels like to lose life. I also know what it feels like to find hope again. 
To varying degrees, loss and hope are feelings that can reach all of us. This is the community that I connect with.
In times of sadness or emotional strain, we should all be okay with just doing what we can. We don’t have to keep up with outsider expectations or keep up with some idea of what we think we should do. We do have to take care of ourselves. How else are we going to keep our strength up for those times when we do get the opportunity to fight?
*Disclaimer: This is very different from when someone else tells me ‘It was meant to be’, because that is never an appropriate thing to say to someone who is grieving. Please steer clear of any form of this sentiment.
5 Essentials to Rediscovering Your Joy After Loss
I love you and am so proud of you for what you are doing to fight for Chase and his memory and for yourself. You are so incredibly strong, even if you feel like at times you are crumbling. I admire your strength. You and your family are always in my prayers. He will always have a voice through you.
Thank you so much Amber. I love you too. Thank you so much for continuing to read!
The saddest day of my life was when Chase passed. Sad for so many reasons – our loss of true happiness as individuals – parents – grandparents – a family. I lost every confidence in the medical community; a loss of seeing my daughter & son-in-law be truly happy; a loss of innocence within our family of brothers & sisters, aunt & uncles & cousins. Life is change but nothing compares to losing a child. This post moves me beyond words. We’re all changed forever. xoxo Mom
Thank you Mom xoxoxoxoxoxoxoxoxo
Laura, I feel that Mom said it best for me too.
Xoxo
Dad
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxox