Let Them Say, ‘He Lived a Life!’


Recently, I had one of the most wonderful medical professionals I know, a Nurse Practitioner who literally saved my son’s life, tell me something that has transformed the way I think about my family’s journey with a congenital heart defect (CHD).

She described a young man who passed away in his early 20s whose memorial service she had recently attended. This young man had a single ventricle CHD like my son, Joshua. She told me that what struck her the most as she was sitting there, aside from the obvious sadness, was how much this young man had lived in his time here. She said, “He lived a LIFE!”

She also told me that many parents search for answers, educate themselves as much as possible and advocate for CHD research and treatment, but at the end of the day, the best we can do as parents is to just live a life with our child.

Crash Course in CHD Treatments

In 2003, when Joshua was diagnosed with a single ventricle CHD at a 20-week ultrasound, aside from looking for people I could connect with who had traveled this crazy CHD journey, I started learning all I could about Joshua’s CHD, about the difference between the Sano and Norwood surgeries, between extracardiac and lateral tunnel Fontan, between fenestration and no fenestration, between aspirin and Coumadin… and the list goes on. You see, I thought if I learned enough, if I researched enough, if I spoke to enough experts, I may be able to save my child. If I just kept searching for answers, I believed I could protect my family from pain and loss. And I have spent the past 15 years doing just that.

However, the lesson in this wise woman’s counsel was the exact opposite of what I have poured hours, days and years of my life into. The lesson is that there is nothing that I can do that will make Joshua survive — not just through the three main surgeries for his defect (my first goal), or to age 5 (my second goal), or to adulthood, or even to old age. I don’t have control over that. What I do have control over is the life that we live — I can control whether we live our lives with CHD in the center and in control, or whether we live a LIFE.

Grateful for This Lesson

Like so many CHD parents, I have been living in fear—afraid of so many things—waiting for the shoe to drop.  CHD caught me totally by surprise, and I believed that if I just prepared enough, I would not be caught off guard again. I would not have to bear that pain, that trauma, again. And I wouldn’t lose my son.

I’m extremely grateful for this lesson, although it’s coming later than I would have liked in our journey with CHD. I am realistic enough to know that I will not stop learning, researching and advocating, but now, I will do a much better job of taking care of my mental health, my physical health and enjoying my wonderful family, so that in the end, someone can say, “They lived a LIFE!”

Jodi Smith Lemacks, Esq., is National Program Director of Mended Little Hearts. This blog was written in collaboration with Speak Now for Kids for their Medicaid Matters Series. Find out more about Speak Now for Kids at www.speaknowforkids.org. You can find them on Twitter, Facebook and Instagram at @speaknowforkids.

5 comments on “Let Them Say, ‘He Lived a Life!’

  1. Saleema Mohammed on

    Thank you for this article. It brought a new perspective to our “new life” with a baby with HLHS. It’s tearing my family/marriage apart. Always too frustrated and sleep deprived and this makes us argue. Reading this I hope will help us get through this. Thank you

  2. Tammy on

    Great article! When my son came home after his first surgery it was all
    About getting him to the second surgery. By that time he had shown his personality and it turn into what does this life have stored for him!! I spent many times and still do reminding myself that typical peers do this so he can also. Especially hard when you watch them fall while learning to walk!!!

    • Carolyn on

      One of the first things we were told by the social workers at the hospital, was to treat him as a normal kid. TGA with a host of other defects. I was terrified. Every day we wondered if he would wake up or have “an event” at school. I’m sure he felt our anxiety. We sent him to a cardiac camp, sleep away (his first), staffed by the cardiology team at Children’s in Washington DC. He came home with a great perspective on his condition. The best thing we did was send him to a marching band camp, then marching in high school, then to a nationally recognized World Class marching band. He loved it. He proved he could do whatever he wanted. He marched with a 30# bass drum, with blessings from our cardiology team. He’s happy, had his arctic valve replaced for his 18th birthday, takes his coumadin most days and is living life. Now … 20 years later, I’m OK with whatever happens in the future, even the dreaded “event”, because I can finally say I am treating him normally.

  3. April on

    Love reading this article!! I can remember clearly hearing heart defect as soon as I had given birth to my son. As parents we never know how hard life is until your face with a ultimate sacrifice. Making a descion at just 5 days old for my new born to have open heart surgery did put a huge burden on my soul. But having a lot of faith has brought my family where we are today. He’s now 7 years old in school and playing in some sports. Not saying the road won’t be bumpy and beyond frustrating at times , we are human. Believe me life didn’t feel normal for a few years with all his surgeries, caths, blood work, constant visits to the cardiologist. Life only gets better if we allow them to be there own unique person, and try not to micro manage every little thing they do. Hang in there parents, & don’t every loose your faith.
    ❤️❤️HLHS mommy of a brave little boy!


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