A Mother’s Perspective

How do I recap 50 years in a few words?

Raising a child with CHD alters your life forever and takes you places you never dreamed you would go. Lorelei Hill, fellow blogger and recent heart transplant recipient, is my daughter. Now, being able to share her experiences to benefit others is Lorie’s dream come true and witnessing this phenomenon is mine.

Born in 1963 with tricuspid atresia, her future was clouded with doubt, but rapidly developing research allowed us hope. At 20 years old I was suddenly thrust into a frightening and alien world of cardiac medicine.

Possibly it was youthful naivety, but I managed to encourage Lorie’s positive, stubborn and determined attitude—the traits that serve her best. Blessed with a talented cardiologist and cardiology team at Toronto’s Hospital for Sick Children, she was encouraged to use self-care. Her cardiologist’s words, “Lorelei, remember, you know your body best,” still echo in my ears.

Watching your child struggle to find her place with her peers is heartbreaking and since heart disease is a hidden condition, kids just don’t understand such limitations. Fortunately Lorie had a few loyal friends who were willing to defend and protect her throughout those difficult years.

Lorie never allowed her condition to define her. Wearing her battle scars proudly, Lorie made no excuses for who she was. Instead, she embraced her condition as a gift and vowed to use her experiences one day to help other children navigate life with CHD.

Against her doctors’ best judgment, Lorie graduated a five-year University program with a major in religious history and her teacher’s degree. Against my better judgment, several years later she decided to travel to New Zealand where she taught for two years. I had learned by now that my headstrong daughter would do what she chose to do so I supported her decision and accompanied her to get her settled. Sitting back and keeping your mouth shut is the most difficult part of parenting, especially when your role is also caregiver.

Lorie returned home, happily married and ready to adopt a child. During another determined fight to adopt her son, she discovered he had a baby sister and became mom to two high needs babies, born just ten months apart. As much as I love my grandchildren, I was terrified for my daughter. Soon afterward, her health began to deteriorate.

Although determined by her cardiac team that she wouldn’t be eligible for a life-saving heart transplant, Lorie was ultimately accepted on the transplant list. Almost two years later, on March 10, 2012, she became the oldest and second Fontan transplant survivor in Canada.

Exactly one year ago I watched Lorie write goodbye letters to her children and husband, preparing herself for every probability. She knew the odds were against her. That was the most painful time of all for me. It was the best of times and the worst of times. We spent that winter together in a condo near the hospital, a blessing beyond words despite the combination of hope and dread shadowing us throughout those winter months.

Our story is a miracle. Today Lorie is able to pursue her dream of writing and educating children awaiting transplant. As for me, my dream is witnessing her success.

I don’t know how I was wise enough to encourage Lorie to live as normal a life as possible but I am grateful that I did. Of course this has to be balanced with proper limits and a willingness to step in when necessary. Lorie learned her own survival tools and never saw herself as an invalid.

I always had a knowing deep in my heart me she would be OK. Even so, at times fear tried to edge it out. Nevertheless, the joys certainly outweigh the years of standing by watching Lorie’s struggles. Today, as adult women, the bond and commitment to each other that we share is our most precious gift.