This past Sunday, my husband, my daughter and I participated in the 3rd annual Congenital Heart Disease Walk that took place at Sunken Meadow Park on Long Isand. This was the third time we participated and we are looking forward to “walking” again in the October NYC walkathon for the same cause.
Our daughter was born with congenital heart disease, but the severity of her condition was not apparent at first. At birth a slight heart murmur was detected, but since she was “thriving” in the medical lingo of the time, no action was taken. Five years later, just before she started kindergarten, I did as was told to do: I brought her in for a checkup at St. Francis Hospital. Following the visit, I was asked if I could “stick around for a bit” since something was unclear on her echocardiogram. That “something” turned out to be subaortic stenosis, a life-threatening condition. So in the fall of that year, Christine went to school for a couple of weeks to meet her new teacher and classmates and then left to have open-heart surgery. She did not return until January.
I could go on for pages and pages about what ensued; I’ve even thought about writing a book with her or about her. On Sunday we celebrated the fact that she is the survivor of 5 open-heart surgeries, the most recent ones having taken place three months apart nearly three years ago. She has, therefore, had open-heart surgery almost every 5-7 years of her life. Imagine trying to live your life with that kind of interruption every five to seven years. Imagine the impact on your family, your school years, your ability to maintain friendships and to obtain and keep a job. Never mind the impact such a life has on your heart and mind. We have been through all the psychological ups and downs of living such a life; to say it hasn’t been easy is the understatement of the century. But despite all the fears and anxiety, pain and suffering, worry and wondering, we are still an intact family with a daughter who is a super-hero to us all.
I have learned so many things from her bravery, her moments of doubt, her refusal to give up on some of her dreams (which included graduating high school on time and attending the University of California at Santa Cruz, both of which she accomplished through sheer willpower). Despite her many ordeals she says she is grateful that she can leave the hospital and resume her life, while so many other patients never get that chance.
We have learned as a family to make the most of every day, to not dwell on the dark side since to do so takes energy we need for better things, and to be compassionate toward others as well as ourselves. I wouldn’t wish her life or ours on anyone, but as she always tells me: “If this has to be my life, at least I have you as my mother.” Need I say more?