Friday, December 25, 2015

Thank You on Christmas, Dear Mom and Dad

Montana in Winter
Dear Mom and Dad,

You did not know that you would become the parents of a little boy with a heart murmur.

Many years later, you would learn that he was born with something called a bicuspid aortic valve.

Others in your family were ultimately affected also.

 Mom, you heard his first cries before they rushed him away. (Dads were not allowed anywhere near in those days!) You could not see or hold him, your first born, for those first 24 hours. He was a little blue. There was a faint heart murmur. That is all you knew.

Whatever was wrong inside, your son was a fighter. He turned a beautiful pink (did something close inside?). Maybe the heart murmur was nothing? It was so faint, after all.

So off you went, home from the hospital together. His baby pictures tell me how much you loved him, how well you took care of him. He was a beautiful baby. (Of course, I am biased.)

It wasn't until he went to school that you were told about his eyes. From the day he was born, the world had been a fuzzy place to him, unless he held something very close. How could he know that the world wasn't like that for everyone? And so, he became the little boy with the big, thick glasses. A very active boy, with lots of energy.

There were so many busy, ordinary days. Two more children came along to complete your family. There was no reason to think about that faint heart murmur anymore. And then, suddenly, your oldest son and his sister, both under 10, were very sick. Off to the hospital they went, both of them. You heard the words "rheumatic fever". After that, doctors very clearly heard a murmur in his heart, and they restricted him from playing sports. Your daughter seemed to be fine.

And so, the years went by, and this boy became a man. I wonder now, about all the times you must have worried about his heart.

Decades went by, and both of you traveled to us when he had his first heart surgery. His aortic valve had to be replaced. I will never forget the two of you, no longer young, going into ICU to see him the first time. You heard about "bicuspid aortic valve" for the first time.

In the years after that first surgery, Dad, you always asked about his heart. We used to tell you there was nothing to worry about any more, that with the mechanical valve he had been "fixed" for life. But you must not have believed it. You kept asking. You were right, Dad, to be on guard. Eleven years later, your son needed aneurysm surgery. Dad, we never told you this, because you had already left us, two years earlier. We went home for your funeral service, just before Christmas that year.

Mom, you were with us for that aneurysm surgery. A big part of recovery is walking. You went with him on those walks, as he recovered. It was a precious time, the last we spent together. Less than a year later, clogged arteries in your own heart took you from us.

And so, Mom and Dad, you have not been with us these last years, as more has unfolded. You see, it was not just your first born who has been affected. One of the next generation has been found to have a BAV. (So far it has not caused any problems at all!) Your oldest son had a very bad stroke, caused by strands of tissue that had formed on the mechanical valve. He had a high risk surgery to get that mechanical valve out. Then, three years later, your daughter, who appeared to have a "normal" aortic valve all those years, became very sick. Both her aortic valve and an aneurysm of her aorta were replaced. It was a very high risk surgery, but she came through and returned to her busy life.

You would be amazed to learn, like we were, that the neighborhood boy who spent so much time at your house with your youngest son, also was born with bicuspid aortic valve. He had his valve and aneurysm surgery the year after your daughter! You would be glad to know that he too has returned to his very active life!

Our dear Mom and Dad, all of your lives as a family, you were surrounded by children with this condition, two of your own and the best friend of your younger son! They all love you so much. On this Christmas Day, so many years after you have left us, we all have special memories of how you made this a special holiday.

You are not here with us today, so that we can tell you that only special parents are entrusted with children with special hearts. You gave them the gift of living normal lives,  the best possible gift of all. As long as you lived, you loved them and were with them through the rough patches.

I hope you won't mind us sharing this with other parents. Parents like you, who have children born with bicuspid aortic valves. You would understand their feelings. But you can also tell them, that no matter what, your children are not defined by anything unusual about their hearts. They are whole and complete in all the ways that truly matter.

I, who write this, know that too. I am the woman who married him, your oldest son, the man with a heart murmur. Through all the years, your son's heart is, and will always be, just perfect to me.

For young parents today, please remember above all that your son or daughter has so many talents to give, to share. Some day, someone else will love them too. Someone will love them for all the wonderful things that they are. The number of leaflets that their aortic valve has will not matter at all.

With  love to you this Christmas, Mom and Dad, 
and to parents of those with bicuspid aortic valves everywhere.

                                                - Arlys Velebir