I’m writing tonight about something very near and dear to my heart, and if I ramble on and make no sense, or if you disagree with me, well that’s too damn bad.
As you know, I lost my youngest son Jack almost 4 months ago to a rare genetic heart arrythmia, and yesterday my wife and I found out that our older son Sam also carries the same arrythmia. For Sam, his condition can never be corrected, but an ICD can come as close as possible to guaranteeing he will not succumb to the same fate that his baby brother did. I’m sad for Sam, for myself, for my wife. It’s not a fair hand to have been dealt.
Throughout this ordeal, I’ve come to realize a lot of the things I once worried about in life, just don’t matter. Even in raising a little boy, so many of the things I secretly may have worried about, no longer matter. As fathers, we tend to raise our little boys to be all things male, and our little girls to be all things female. We correct our sons if they tell us they like pink…blue is a better color. Little girls shouldn’t play with trucks, they should play with dolls. Well, I’m here to tell you as a father, none of it matters. Let your kids be kids, and let them choose what they want to do in life, what they like, who they play with, what they play with. Society too often dictates what’s appropriate, what we should like, or what we should stand up for. Sam’s had so much of his future stolen from him. Choices he should be able to have, he’ll never get to make.
In a short period of time, Sam will have to endure invasive surgery, something no 3 year old should ever have to deal with. An ICD will be implanted behind his stomach mucle, his breast bone will be opened up as it would for someone who’s having open heart surgery, and two leads will be attached (with screws) to his heart. If his heart ever needs to be shocked, it will feel like “a horse kicked him in the chest”. True words from a patient, not something I’ve made up. Yes, it is graphic and awful, and horribly unfair. From that point on, there will be no sports, no gym class, no goofing around like a normal boy should. Scars, multiple surgeries, broken leads and a lifetime of worrying about his heart are what now consume my thoughts.
As a father who mourns over the fact that my sons have lost so much and had no say in the matter, I would hope that all of you fathers out there to embrace your children’s lives, and do your best to let them live their own lives and make their own choices. Be a part of whatever they choose, because when it comes down to it, life is too fucking short for someone to have other people making choices in life for them.
July 28th, 2009 at 9:40 pm
Well put, Steve….
July 28th, 2009 at 11:08 pm
I am so sorry to hear about your sons. You are a wise man. It is so important to let children make their own choices. We all make choices and have to live with the consequences of those choices. It’s important to make good choices wisely, but free will is essential. I hope your son overcomes this problem and the treatments advance in the future so that he won’t have to worry about this his whole life. My thoughts are with you and your family.
July 29th, 2009 at 9:46 am
Steve,
First of all, a big girly man-hug for you from me. I actually started following this blob via your original post about Jack. I am a father of four, with a daughter diagnosed at 13 with LQT and a new baby girl, 4 mos., also now being treated for LQT. I am so sorry for your family, and I know that is a monumental challenge to turn the corner and start looking at life in a completely different way. For us, it’s been more than a year since we encountered this world of beta blockers and “lifestyle modifications” and we are still trying to work things out. What I do know and can tell you for sure is that there is a whole big world out there full of infinite choices and paths for Sam. Yes, some of the paths you thought he might take are now covered up with detour signs, but there’s a big bunch of new experiences available in the unexpected. It’s our job to make sure our kids find the ones they like and go full steam. In the end, it doesn’t matter whether our kids want to be triathalon champions or poets. And even less relevant what *we* want them to be. We just have to show them the way.
On a less philosophical vein, I would really encourage you (if you haven’t already) to reach out to SADS or other communities to be in touch with other survivor families, and people raising kids with LQT. SADS is a great group and they do a lot of family support to let you know all the ways kids and grownups with LQT are handling it. If you can get to any event or seminar, even better. I have met inspiring college students who have lived most of their lives with LQT and ICDs. The ones I’ve met have amazing outlooks on life and living.
It may sound sappy and contrite, but you have been given an insight here that most people are blind to their whole lives. You know what’s important. And Sam will too.
August 3rd, 2009 at 12:01 am
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