As my 50th birthday approaches, I am learning to ride a bike for the first time.
Some of you may think this odd. For those who do, I could say, as my 2nd birthday approaches, I am learning to ride a bike for the first time. Sounds much more impressive, doesn’t it? In fact, both statements are true.
This August, I celebrate my 50th birthday. The following March, my body and heart celebrate 2 years of revival. For those of you who do not yet know my story, a whole new life began for me on March 10, 2012 when I received the gift of a new heart. Today, Little Heart beats happily in a body that has never before had the strength to ride a bike. So who says you can’t teach an old(er) dog new tricks?
Riding a bike is not the only first of my life. This new heart of mine has taught me other things as well. My sense of balance is improving daily, and for the first time in my life, I can walk as fast, if not faster than some of my friends. I even attended my first Congenital Heart Conference a few weeks ago, and learned what life can be like for non-congenital parents of congenital heart defect (CHD) children.
My husband and I are parents of two congenital children, and yet, I was quite surprised to learn that my worries as a mother are far different from those of a parent who has not yet learned to live with the diagnosis. When my children were very little, my worries ran along the lines of what if my son never gets potty trained? What if my daughter won’t stop biting? My son turns 11 today, and yes, he is potty trained. Has been for some time now. And yet, when he was going on four, and still wearing his pull ups, I was beginning to … well, for lack of better words, panic! When my daughter was biting every friend she met in pre-school, plus her own brother every chance she got, I have to confess, panic was setting in again.
I sat in the CHD conference and listened to the tearful worries of mothers who asked, “how do I leave him with a sitter when he could stop breathing at any time?” and “how can I trust a teacher to look after my fragile little girl, when I’m the only one who really knows what symptoms to look for if she is in distress?” I glanced over to my own mother, who was also in attendance. She shrugged. Perhaps she was simply too young of a mother to truly realize the dangers of sudden cardiac failure – the number one symptom of CHD patients. Perhaps I’ve lived such a graced life with my condition that I too do not see the danger my own children could face.
And yet, I ask myself, do I wish my children to live a life of joy, or a life of fear? As a CHD, and a mother of CHDs, I have learned to approach every day, the same way I am now learning to ride my bike. I look at the bike, I straddle it. I find my balance. I push off.
It has taken my body nearly 50 years to come to the point where I can achieve balance. Like most every other person, I have juggled my own health issues, a career, marriage, and children. The fact that my children are slightly different from other children is simply not a big issue. If there is anything I can share with parents of children with CHD, it is this – all children, all people, come with their own unique gifts. In 1963, I was born with a rare and deadly form of CHD. I not only survived, thanks to parents who allowed me to be exactly who I needed to be, I thrived. My children have CHD. They run. They play. They fall down, a lot! And lately, in learning to ride a bike, so have I!
Raising children with health issues of any kind requires more than love. It takes acceptance and balance. As I sat at the conference, I looked at all of those beautiful CHD families, and made a promise to myself to connect with as many as I could. I looked for their balance when speaking to them about CHD, and hoped, that as my own family had, other CHD families would push off from the conference with a renewed understanding of the gift they had been given.