Why have I not just forgotten what has happened to us? There is a cemetery with our children’s names 20 minutes away from the house. Just forget. You have two surviving children. When I found out there was a day called Rare Disease Day, my soul soared. One day! Just one day! Just one day, I can say their names out loud. I cried for hours… I had tears of grief and joy.
My body, my soul and my mind will never forget any of the 5 babies that I lost. I was born and raised. Children just happened. As the song goes, “first comes love, then comes marriage, then comes the baby carriage.” I can remember the first time I ran into the concept of infertility. My mother told me an aunt adopted my cousins. For minutes, I asked who would give up their kids. Why couldn’t Aunt have children? Is she sad?
Moving forward, I expected to fall in love, get married and then this mysterious baby carriage would show up. I never expected to break medical history. We are the first documented case in the world. Many family and friends are not apart of our lives. In the case of my family not being involved, honestly Avery, our first daughter’s death was a good excuse. There are many reasons a family ends up unhealthy. There are other issues. I am not better than them. I pray someday they become whole. I can no longer function as the black sheep, because I discovered through the beauty of the 12 step program that I am a beautiful and flawed being. As my former Alateen sponsor would say, “I am a diamond. Every diamond has flaws. That’s what makes me real!” I recently celebrated 2 year anniversary in returning to Co-Dependents Anonymous.
Avery, our first daughter, was suppose to be born in April of 2004. My body went into preterm labor in February. I suffered infertility either pregnancy loss or infertility. At various times in my life my grief made me feel like my morgue. I know now that is not true. Today, I got in touch with some of the grief. She will be 16 on February 21st. I should be cracking jokes about driving lessons and thinking about driving permits. Her birthday is always February vacation here. All the good birthday parties we could have had. I prefer to work through February vacation and take April vacation instead. My arms are empty. I am a rare disease mom with no child to care for. The grief has changed over the years. It is like loosing an ability to see, walk or hear. I have adjusted. It doesn’t mean the grief is gone.
This month, we plan to stay local for a Rare Disease Day event. We have plans to celebrate our family by going away to a water park. Her anniversary has become a day of celebration and remembering. I fill my life with hope, joy and I grieve as needed. When the second daughter Addison died the same rare disease Campomelic Dysplasia, I ended up with common breast cancer at a young age. I struggled for some time if I should continue in breast cancer treatment. I had this dream where I was basically spoken to by my grandmother to not give up. I choose to fight because I had 5 year old daughter named Hope at the time. Giving up was not fair to her or my husband. The path was difficult. My mother died all within 10 months of my life. For years later, I found the grief of my losses. I felt I was a atheist. I suffered due to my trauma of my losses. Frequently, I worried I would loose my only surviving daughter. When crisis happens, there are two choices.
I would describe myself as agnostic now. I have had dreams of Avery. She hasn’t appeared in years. She usually takes the form of Hope. (Hope has dirty blonde hair.) When I speak, Avery’s hair turns brown like mine. I do believe in something. I can’t explain it. I promised the universe to remain involved with rare disease. I promised my children Avery and Addison. A mother never forgets her promises. I asked for strength to survive common breast cancer treatment. This year, I will be celebrating 10 years as a young common breast cancer survivor.
I would have like to have gone to the Washington DC events. My other surviving daughter is 4. By staying locally, she can stay at her home daycare. We can do so many amazing treatments in the medical field. It is not right to not make medical advancement because someone suffers a rare disease. Everyone deserves a chance. This coming from your common young breast cancer survivor! Happy sweet 16 to my beautiful angel Avery! I love my angel children and surviving children!
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