Hope In The Face of Isolation: Feb. 28th

April 17, 2013

Guest Post by Mary Crompton

My husband and I decided 10 years ago that it was time to start a family. It was the most happiest time of our lives. None of us could have predicted the storm brewing. I almost passed out, when I was told our first daughter Avery was going to die from a rare disease. She died a day after birth. It took months for me to get pregnant again. We went through so many tests. I gave birth to a Rainbow, who is 7 years old now. The dream was not to have one child. So we tried again…..I miscarried at 6 weeks, 18 weeks and 13 weeks. We sought treatment and help, but no one could have predicted the reason. Then we couldn’t get pregnant.

My husband and I saved for IVF. I didn’t get pregnant. On our 10th wedding anniversary, I got pregnant on my own. Sadly, Addison died from the same rare disease as Avery. More testing for us.. It made me question everything…..The isolation has drove us apart at times. Six months to the day, Addison died, I was diagnosis with breast cancer. Through there is disagreement here. There is no medical basis for what I am going to say. I think the years of silence and isolation had caused the cancer. Sometimes, I feel different then other women. I felt like I did something wrong. The horrible part of the rare disease that both babies died from is it makes you question what you are made of. I am lucky to have a wonderful husband, our marriage has survived the years of fertility treatment, loss, breast cancer and genetic testing. My cancer awoken me in ways. I started researching agencies that address the issues facing rare disease. I became more outspoken seeking others with secondary infertility and pregnancy loss. Before I lived on an island. I will admit that at times, I would not speak because I felt “different.” The cancer was woken me to the fact that I need to grieve our losses. A few years ago, my eyes filled with tears as I came across a website about Rare Disease Awareness Day. It’s a day to bring awareness… about all rare disease. It’s Feb. 28th.

I no longer lived on a island, but a world with families facing the same issues. I feel human again. How freeing it is to know I am not alone in the world. Both my husband and I have had to redefine who we are. My husband and I are going forward to have another child. I am healthy and ready now. I am open to adoption and trying IVF again. It’s been a long ten years. We donate in the name of our babies a lot. If a certain time of year is stressful, we plan something. I have had my husband and rainbow to keep me strong.

Life is a full place.

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