This is a blog I never wanted to write. That I don’t know how to write. That I’m not even sure I should write and post on PathtoFertility. Maybe it’s not appropriate to share such personal information here.
Except if you are a regular reader that might make you laugh, because of course I share personal information here all the time. It’s really one whole, big hunk of the blog. By sharing my experiences of infertility and fertility treatment, you, my reader, see that your own reactions and responses are well within the range of normal, even expected feelings. My gift, as I see it, is that even though I have not been in treatment for a long time, I still relate to how it feels to be in fertility treatment and struggling to conceive. Part of that is my connection to patients and Fertile Yoga students. Part of that is because of your wonderful feedback here on this blog. Part of that is how I see things in the world; that I know so much of life is relatable. That how we see things, the glasses or lenses that we look through, affect who we are and how we are in the world. And I feel connected to you, my readers, so I will share.
Deep breath. And again.
On March 19, 2014, one week ago today, my older sister died.
I remember how much she wanted me to have children. How much she hoped and dreamed that I would. Because she could not.
She never talked about her longing or sadness about not having children. Certainly not in her later years. I will ask her best friends, identical twins, whether she spoke of this earlier in her life. I hope at this moment that she didn’t feel sadness about it. She was not a sad person. She was a very brightly alive person.
She loved children. Absolutely loved them. We have six cousins and she knew all of their children. She knew their birthdays and she always made sure to send cards and little gifts. I was reading one of her books last night and came across an envelope with her handwriting on it, with one of our cousin’s children’s names and birthdates, as well as anniversaries and more.
Even as she became more disabled and in more pain, she taught after school art programs to children. We found so many pictures and cards from the children that she taught. Loving cards, in carefully crayon written words, addressed to her, with comments only she would have understood. Pictures of children with smiles from ear to ear, showing off the carefully designed projects that she helped them create to feel proud of themselves. They were her children, her connection.
She always had children in her life. There are more pictures of her sitting, with her huge smile on her face, holding a baby than almost any other type of picture. Babies were always pretty calm on her lap. Shari was not a saint, but her gentle spirit and playful connection to the very young was genuine and readily apparent to the little ones. She was soothing and spoke to them in a way that they understood.
She understood bunnies and teddy bears and baby dolls. She really got that they had a life of their own. When I look, I see a stuffed animal collection. That is not what she saw. She saw her friends, her companions. And her babies. I had to reread the Velveteen Rabbit to remember. She never forgot. Her well loved companions will have a home with my younger sister and I. They will stay part of the family.
Shari was perhaps the best role model ever for taking childless, moving through childfree and coming out on the other side. She was an aunt, a cousin, a second cousin, a teacher, a motivator, and a friend. She was a sister. And she was a daughter.
She was pretty inspirational in those roles. When life circumstances prevented her from achieving a goal, she circumvented the obstacle or created a new goal. She let very little do more than slow her down and she did what she needed to, with a smile on her face. She was unstoppable.
I saw evidence of all of this in a simple expression of her art. While going through her home and starting to pack things, we found art work we had not seen before. Some of it was unfinished and looked abandoned. Starting with the tiniest of needlepoint, then larger pieces with bigger holes, then bigger canvases. She moved to plastic canvases and then painted frames. She started out with the tiny seed beads, where the holes were almost imperceptible, and then slightly larger beads with larger openings, to larger beads still, finally to wooden beads.
These weren’t abandoned pieces. This was her accepting that it was time to move on to art that she could see and work with more easily. She worked with her abilities and found the medium that would accommodate her. I don’t know if she had regrets about putting the previous work away. I do know that she moved on to what she could handle, a place where she could still express herself through her art.
Shari believes that she is with my father, uncles, grandparents and beloved animals. I believe Shari is where she needed to be next, where she could be her most capable and able. I believe that she is now, finally, pain free. I believe that she is whole and complete.
But then, she always was.
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Something we’ve been waiting for has finally come along. As Assistant Executive Director of The American Fertility Association, I was often asked, “how do we know that the children are ok?”
Patients asked, certainly, but quietly, so did those in the infertility medical field. New techniques were developed and instituted, and there wasn’t research to prove that somewhere down the road, the children who were conceived weren’t going to pay a price. We used new drugs and new protocols and we had no idea how our babies were going to be affected, our toddlers, certainly not our teenagers or when our children became adults.
In other words, what we knew was what we saw. Healthy babies, healthy toddlers and healthy teenagers. We couldn’t and still can’t, tell patients what risks they were taking with their children’s health; we didn’t know. We did know what we saw. We want to know more. For years, we’ve wanted to see a prospective, long term study about our children. Information that they could then have in their lives, medical information potentially that they might need to pass on to their own children.
There were many attempts to put together this type of study. Because of the range and scope and funding needed, it hasn’t been done. At The AFA, we worked with The Rand Corporation and still couldn’t get it done. Not enough money, not enough buy in.
It’s here. And it looks really good. You, as current patients, need to read the information carefully. Very carefully. This is about your medical history and that of your children.
It’s called the IFRR (Infertility Family Research Registry).
When I see who is endorsing it, SART (Society of Assisted Reproductive Technology), ASRM (American Society for Reproductive Medicine), a division of NIH (National Institute of Health), Dartmouth Medical College, RESOLVE and The AFA, I feel good about the effort. When I see where the funding it coming from (Eunice Kennedy Shriver Foundation and National Institutes of Child Health and Human Development (NICHD), a component of the National Institutes of Health (NIH)), it’s apparent that there’s a financial commitment here for an important, on going study. Looking further at the investigators, and seeing, among notable others, William Gibbons, past president of ASRM, I see the strong scientific and medical commitment behind this project as well.
I don’t know if you will want to be part of this research. It means divulging, albeit in a private, protected way, very personal medical information.
What I do know is that this registry has the potential of telling us important information about the futures of our children; the ability of participating in scientific studies; and of creating a powerful data base where real conclusions can be drawn about the health and well being of our families.