By Lorelei Hill
8 Oct

The Blessings of My CHD

Thursday, October 08, 2015

It’s a quiet Saturday morning. Thirteen-year-old Riley is watching television while I finish breakfast clean-up when I hear the broadcaster say, “If you see blood in your urine, call your doctor immediately.”

“Blood in your pee!” he sneers. “As if…”

“I wouldn’t say that out loud,” I tell him. “Your uncles’ father died after ignoring blood in his pee.”

I took this opportunity to explain how the body warns people of hidden medical conditions. “Just like your chest hurting when you run for too long is your heart warning for you to stop running, blood in your urine can be a warning for many things, like cancer.” I went on to explain how paying attention to warning signs can save your life.

“Why wouldn’t you?” he asks.

“Fear of finding out what the warning means,” I reply.

Morning progresses into afternoon and Riley sits down with his father to complete his math homework. He is working on prime numbers, a simple concept that he understood when he was in seventh grade. This is a new school year, and on top of having tetralogy of Fallot, Riley also has fetal alcohol syndrome (FAS), a condition in a child that occurs as a result of the mother’s drinking during pregnancy. It results in a variety of physical and neurological signs and symptoms.

As a teen, cardiologists warned me that my own congenital heart condition could prevent me from having children. It didn’t take long for my husband and me to understand how right they were. Shortly after that realization, we were blessed when two beautiful infant siblings became our children. Both had been born with various forms of CHD. From the moment Mike and I saw them, we knew Kate and Riley were our babies—they just had to be carried by another.

Before marriage I had been an elementary school teacher. I loved teaching and had a wonderful rapport with my students, so naturally I believed this parenting thing would be a cinch. Not so, especially given their brain condition. As my own condition deteriorated, so too did my patience level. Numerous emergency hospitalizations followed up by persistent changes in medication compounded my edginess. Now it falls to Mike to assist the kids with their math and science-related homework.

Some days I wonder how it is that I have changed so much from who I thought I was going be. Once upon a time I was that young, well-educated professional who had life by the tail. I was able-bodied and able-minded despite my cardiac condition. Today, I am the woman who was born with tricuspid atresia who had a heart transplant. I am a grateful heart recipient with a brain injury. Infection is a side effect of transplant—my infection just happened to travel to my brain.

I could see all of this as a horrible thing that has happened to me. Then I look at everything I have as a result of the circumstances of my life. Had I not had my CHD I might have continued on, life as normal teaching in a community school and been happy. Falling ill and having to take my first leave from work resulted in me eventually travelling to New Zealand. It was there that I met Mike—the love of my life, the father of our children, the person who picks me up whenever I fall.

While living and building a life in New Zealand my condition deteriorated, necessitating a move back to Ontario where I could be closer to my cardiac team. Once here, we saw a photograph of Riley in a Children’s Aid Society binder of “Waiting Children.” I knew instantly Riley was our child and understood the other reason we had to come home.

Today, as I watch my exceedingly patient husband guide Riley through his factor lesson, I can only see the blessings in my life. Even my brain condition is a blessing. It has given me the gift of greater understanding for my children’s difficulty in comprehending and inability to recall. I continue to be a strong capable woman, with the awareness that allowing people to help is actually the best way of showing my independence.

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