To My Heart Page
In the fall of 1997 I was approached by Anna Jaworski, who has edited several books related to congenital heart defects, to write an article for her newest book, "The Heart of a Mother". This book was to be a selection of articles and poems written by mothers about raising a child who has a congenital heart defect. Anna had come in contact, through The Children's Health Information Network, with several women who have a congenital heart defect. She asked us if we would write an article about our experiences, and the trials and joys of being a mother with a congenital heart defect. The following is the article written by me.
Leading The Troops
My name is Carolyn, and I was born in Toronto, Ontario Canada on April 23, 1948. I was diagnosed with a ventricular septal defect when I was about nine months of age. Dr. John Keith performed a catheterization at the Hospital for Sick Children in Toronto when I was about ten years of age. My parents were told that I had developed Eisenmenger's syndrome when my heart defect caused damage to my lungs. Although surgery could correct the heart defect, the pressure in my lungs had caused irreparable damage, thus heart surgery would actually endanger my life. I did not have surgery and was left to try to lead a normal life.
This was difficult because I was never able to keep up with the other kids. They did not understand how much it hurt me to be left behind. I was never able to take part in sports, and I always felt like a fifth wheel sitting on the sidelines. Even when there was a sport that I could participate in, I was always the last one chosen because I was never good enough. I was not allowed to go outside at recess during the cold Canadian winters; although some children envied that, I was still left feeling different. One teacher even made fun of me! When asked what things we need to do to keep healthy, I put up my hand with the answer, "Get lots of fresh air and exercise." The man muttered under his breath, but loud enough for me and the rest of the class to hear, "Why don't you practice what you preach?" What an insensitive man!
As a youth, I always felt rather homely, being tall and awkward and having "four eyes" and mousy brown hair. But, in the eleventh grade, I blossomed. I got contact lenses and coloured my hair blonde. What a change -- there was no holding me back! Lots of boyfriends, dances, and fun! But, I always had this deep dark secret that many did not know. Because of my congenital heart defect, it was quite likely I would not be able to give birth to a baby -- something I had always wanted very much. How do you tell a potential mate that you have a congenital heart defect and may not be able to bear children?
When I was twenty, I met a wonderful man. When I told him of my circumstances, he was not discouraged by it at all. He explained to me that he had some medical problems as a child and was told that he may not be able to father children. So he was very understanding. Before we got married, I went to the doctor to confirm my suspicions. And, the recommendation was for me to avoid becoming pregnant. After testing my fiancé's sperm count, it was confirmed that he could indeed father a child, and it was decided that a permanent means of birth control would be best for me, as I would not be able to take the pill. A month before our marriage, I had a tubal ligation.
After about a year of marriage, I called our local Children's Aid Society, explained the situation to them, and asked how we should go about adopting a child. The social worker, of course, asked how long we had been married, and when I said, "Just a year," she said that a year was too short a time to try to get pregnant. But, when I told her the circumstances of our situation, she set up an appointment for us to go in for an interview. The first interview was with several other prospective adoptive couples, and it was just to give us an overview of the adoption process and to allow us to ask questions. We then went through an office interview and two home interviews. One of the requirements was for us to have a medical examination. I explained to our social worker that I was afraid my heart condition would prevent them from allowing us to adopt. This was a very real fear! She relieved my mind when she explained that there had been others with medical conditions who were approved and did not think this would be a deterrent. So, following our medical exams, we were accepted as adoptive parents.
Our first child, a son, arrived on December 17, 1970 at the age of five weeks. Our second child, a daughter, arrived on July 31, 1973 at the age of twelve weeks. What beautiful children they were! I like to tell people that the first day we had our babies, it felt as if we were just babysitting but, by the second day, they were ours! I was in love! The affection for a tiny, helpless baby grows very fast! For myself, I cannot fathom loving a child I had given birth to any more than I love these two children.
This little poem has touched my heart, as it explains the depth of my feelings:
Not flesh of my flesh,
Nor bone of my bone,
But still, miraculously my own.
Never forget for a single minute,
That you didn't grow under my heart,
But in it.
I was very fortunate to have been able to be a stay-at-home mom. I know that I would not have had the physical stamina to work full-time and raise a family. I feel very fortunate in that my CHD did not have a profound effect on the way I was able to raise my children, nor did it adversely affect the lives of my children. Luckily, my children were very well-behaved, and did not wear me out physically. But, I was not able to do some of the things other parents were able to do with their children. Winter sports were probably the most difficult. As a teenager, I had given skating a try but never learned to skate; however, when they had free skating for preschoolers, I got myself a pair of skates and did the best I could skating with my children. It was like we were all beginners. And, in time, when they learned to skate, off they went by themselves. I would have loved to have taken my kids tobogganing or skiing but was not able to take part in this type of winter sport. Summer was not so difficult. Every summer we would head off to the provincial parks with our camper. We did some hiking, but I avoided the big hills. As long as I had my husband by my side, I was not afraid of getting into a situation with the children that I could not handle.
I became a Brownie leader but was always careful about the kinds of activities chosen. The winter season has always been difficult for me. I tire much more quickly when exerting myself in cold weather. I remember when the Brownies would have a winter activity day, I just would not go because I could not take part in some activities, and I did not want to explain to anyone why I could not. I was always afraid of getting myself into a situation that I could not handle. The most memorable of those for me was when we took the girls on a cookout at the beach. We had to go down a big incline to the beach -- which was fine. But, the return trip was terrible for me. I had to keep stopping to rest -- I was so out of breath. Another time we took the Brownies and Beavers (five-year-old boys) up to Ottawa and walked the cold, windy streets. But, I trudged onward because I would not give in to this! I continued being a brownie leader for seven years.
I was always the first parent to volunteer on class trips but again, fearful that I would get myself into a difficult situation; however, that never happened! I was a parent volunteer in the special education classroom of our school for two years, working two mornings a week with children with learning and behavior problems.
Miraculously, at age thirty-seven, unbeknownst to me, I became pregnant. I am still amazed by the fact that my body repaired itself. Unfortunately he pregnancy ended with a miscarriage. I realize that was best because I know that the doctors would have advised me to abort the pregnancy. That would have been a very difficult decision to make. God, in His mercy, knew what was best for me.
Sadly, in 1988, my marriage of nineteen years ended, leaving me to raise my two teenagers on own. These were difficult and stressful years, but I am proud to say that we made it! I have two wonderful, adult children who have both chosen loving individuals to be their life partners. My son and his wife have blessed me with a beautiful grandson who is now twenty-two months of age. Being grandmother is a little more difficult for me physically than being a mom was. Along with having to work full-time now and feeling more fatigued, I find that over the years my physical stamina has decreased and that I suffer from a lot of joint pain due to my heart condition.
I am truly thankful that I have been able to lead a fairly normal and active life. Although my CHD has caused me to miss out on a few things in life, I have not missed out on any of the really important things. I am so happy that I was able to experience motherhood and all the joys that go with it.
So, I will continue to push on -- to refuse to let my CHD bring me down. If anything, my CHD has taught me to appreciate every day and to enjoy life to its fullest. My heart may not be perfect, but the love I have inside it helps me to achieve more than I ever though possible.
©1999
Reprinted with permission from Baby Hearts Press
Links to my favourite Heart Information Sites:
Canadian
Adult Congenital Heart Network
The
Children's Health Information Network