Precious And Precarious

Life is both precious and precarious. My wife is 9 years younger than I and I she was a very young 18 yrs.old when our daughter was born. Later we found out that she had a rare genetic disorder called Vasovegal Syncope  In a nutshell she had an immature vegas nerve that cause her heart to stop without warning, she would pass out and go into convulsions. The convulsions re-started the heart, with rare exception death would occur. That was the hard part, not knowing if she would survive an attack. She also lost control of her bladder and that was embarrassing for her and it caused her some insecurities. She had numerous attacks in public and high school. We worked very hard to keep her self-esteem and confidence on balance. She graduated public school with an A average and was an Ontario Scholar with all marks over 80% in high school. She went on to graduate school and now is married with a 6 month old boy, my first grandchild.

A couple of years later we decided to have another baby. We were told by the genetic counselor that the risk was 50% that there could be another kind of defect if we had another child. After 8 months we received the news that our baby would be stillborn because the baby had Anasafeli (no head covering and an undeveloped brain and stem). My wife was 20 and was emotionally distraught. She said she was giving birth at full term. She wanted the baby as long as she could, even knowing the baby would be stillborn as is the case with this genetic disorder. She gave birth on time and remarkably the baby was not stillborn. The hospital allowed my wife to say goodbye our daughter we named Mary Elizabeth and then took her to the neo-natal intensive care unit, presumably  to die. Day after day I visited Mary, but my wife did not want to say goodbye a second time. The grief counselor and I tried our best to change her mind. 

Finally, one week later I simply and compassionately insisted she accompany me into the hospital. She did so and ended up staying there holding Mary for 18 hours. During this week , the doctors and nurses said it was nothing short of a miracle that Mary E. had hung on so long. Monday morning around 4 A,M. the hospital called to say Mary has passed away. Only 5 hours after my wife said good-bye. The nurses said she was waiting for her mother to hold her before she left this world. It was a very difficult time for us and for my wife it was a loss that I could never describe.

After genetic counseling we were informed the probability of another genetic defect was in the 80 percentile range. We waited for 3 years and decided we did not want to have an only child. Joanne got pregnant and took every precaution she could. She did not work. We had decided that we would be the only people to raise our children. At the time I was making $3.75 working in a furniture warehouse and in the evening I looked after our apartment building and received free rent. 

Our son was born in 1980 and outside of scar tissue in his lungs from pneumonia he was healthy. Both of my children were relatively happy and adjusted to life pretty well. I stopped drinking alcohol when my daughter was born and she was 25 before I took another drink, my wife has never drank in any amount and neither of us smoked. Both children we Ontario scholars and never drank to excess or were involved with drugs that we knew of. 

Our home was home to my son and daughters friends it was the place everyone like to come to. I can't begin to say how many breakfasts I cooked during the decade when my kids were teens and young adults. I relished it then and they are very fond memories and I see some of them and we are still people they respect and are immensely cordial. 

We lived a simple life, we had what we needed and no more and it all turned out just fine. My wife and I are now married 38 years.
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3 Responses Apr 1, 2012

That is what those lemons are for making that sweet cool drink for those really bad times. You have described what is called life and we each walk a different path. We all come to our own learning from it. Sounds like you found the key to life and the real meaning of what is important. That is so much worth more than most will ever know. I am glad you walked that path with your wife and family intact. A great inspiration for others and so glad that first grandchild is making up for a lot of hardships. Thanks for sharing

Thank you for sharing this story. It fills in alot of the details for me. You really are an example of a person who when given lemons made lemonade! I hope you are enjoying your day and hope to hear from you soon.

awesome story your both bless simple life is great and happy 38 years thanks you for shareing enjoy what you have and have an awesome day you both