When Julie’s daughter Rose was born with a CHD in 1984, she knew the road ahead wouldn’t be easy, but she was determined to make the years, however many there would be, count.
No one ever thinks that one day they will need to pick out a headstone for their child’s grave. No one ever thinks that one day they will need to organize a venue for their child’s memorial service. But for some of us who have lost children with congenital heart defects, that is exactly what we have done. But this is not about bereavement so much as the preparing for it. It is about providing as good and happy and ordinary a life as you can for your child while they are alive. It’s the living part that matters.
A few days after my daughter, Rose, was born on Groundhog’s Day of 1984, we learned the painful and terrible truth of her severe heart defect. The cardiologist told us that on a scale of 1-10, with 10 being “Death”, our daughter was a 9. We were told that she had a shortened life expectancy. At that time they told us she may just have a few years. It was unlikely that she would live long enough to complete grammar school.
But, she kept beating the odds. She was cared for by brilliant doctors and surgeons. And the science and the understanding of congenital heart defects kept progressing.
Still, we never forgot for a second the severity of her condition. We were truthful with her and she just rolled with it. We took every opportunity to give her a rich, normal, ordinary, happy, full life. She had an older sister to tease and pal with. Scary as it was, we traveled with her. We took our daughters camping in Acadia National Park and Yellowstone. Rose experienced cable cars in San Francisco and had her picture taken with the Statue of Liberty. She loved the Beatles so we took her to Liverpool to see The Cavern Club and Strawberry Fields. She went off to college, graduated and moved to Los Angeles. Rose snorkeled in Hawaii, played with spider monkeys in Mexico, and rode horses on the beach in The Bahamas.
We used to laugh together when we measured things in “Rose Years”, similar to measuring time in “Dog Years”. We always knew that she didn’t have much time. But, every day, every single day, we made the very most of the time she had.
She moved back from Los Angeles, got accepted to a Cardiac Ultrasound program, and buckled down to get her certification. And got it. She met a beautiful, kind, gentle man who loved her utterly. They married in a gloriously lovely ceremony and she wore a gloriously lovely dress. She wore her great-great-grandmother’s diamond lavalier and danced with her father at her wedding. She was blissfully happy.
And through it all, every school field trip to the Shedd or to the Field Museum, every time we stood in line at a movie theater waiting for the next installment of Harry Potter, every lunch at P.F. Chang’s waiting for an infuriatingly long time for her to make a decision on her menu choice— frankly, every time I sucked air– Every. Time. — I knew I would watch her die.
She died when she was 31 years old. She had been married a little over a year. She died after a long, terrible, last hospitalization. I cut off a lock of her hair as she lay dead. We cried at her bedside, all the machines turned off and brutally silent. And we held her cold hands.
Often I will hear parents of CHD kids talk about having PTSD after their child has surgery. I tell them, “You don’t have POST Traumatic Stress Disorder, there is nothing “Post” in what you are living through. You have OTSD, ONGOING Traumatic Stress Disorder. This is a journey, not an isolated moment in time.”
The stress and pain and grief and sorrow you are enduring will never end. It will ebb and flow. It will change. But it won’t end.
But. You can give your child a happy life. It’s the living part that matters.
And if you try to do that with all your might you will have soaring, fierce, incandescent memories to sustain you.
You will need them.
Julie Podulka is a retired First Grade Teacher and lives with her husband of 42 years, John, in the natural beauty of Northern Michigan. They cared for their daughter, Rose, for all her 31 years. They often visit their oldest daughter, Claire, and her husband, Mike, in Chicago. They are the happy grandparents of Henry and Lucy.