Last week’s excellent #CreakyChats on family planning and rheumatic diseases brought up some memories.
I remember the moment I decided not to have children of my own.
My mother is pushing my manual chair through the old part of Rigshospitalet*, the hospital where I spent several years waiting for hip replacements. The hospital where I go to see my rheumatologist. Where we have just been, on one of the regular checkup visits to see how I’m doing.
The older area is composed of a multitude of red brick three-story buildings, each containing a different department, different offices, all connected by elaborate tunnels underground. Both my sister and I were born in one of those buildings. I remember visiting my mother while she was on bed rest, holding on to my sister who, just like me, was in a rush to get out. I remember the old linoleum, the tall windows, the smells of beds, babies, and breast milk.
It is early summer, on the cusp between May and June. All the trees are a bright, fresh green with new leaves, the contrast with the red brick of the old buildings brightening the day even more. The sun is shining from the high summer sky and I can feel its warmth on my face and my arms. I can feel the wind in my hair, hear it rustling the leaves.
Yours is the genetic form of RA. The words of the rheumatologist are still running through my brain, each of the seven falling with a weight like an earthquake. I’d had a test with my last round of blood tests. Nothing mandatory, but it would help RA research, so of course I did it. After all the years of living with this disease, all the pain, everything it had put me through, I’d do anything to help research. This test was the show which kind of RA you had.**
Behind me, my mother is talking about how this makes no sense, because I am the only one on both sides of my family who has RA. Well, with the possible exception of a distant aunt, but nobody is really sure if that’s what she had. Her words hang in the air around me, but are nothing compared to his words, still alive, still throbbing, carried on the wind, whispered in the leaves.
Yours is the genetic form of RA. The implications of this are stacking up, one by one. I add them up, do the math, see the future. In the space from the bottom of the steps of the building where I went for a regular checkup and heard these words that will change my life to the curb, I make the decision. I will not have children of my own. Will not expose a child to the risk of developing the disease that has caused me so much pain, that has stolen my childhood. In that moment, I give up something I didn’t know had been part of my dreams for the future.
I was 17 years old.
It’s not long before I develop a plan. I decide to adopt and for many years, know that when the time comes, a little girl from China would find a mother in me. I carefully save my toys and favourite books to pass on to her. I read stories about families who adopt to get ideas on how to help my child celebrate both her cultures and families. I read about Gotcha Day and decide to celebrate that with cake and a party. I think about how I grew up and the traditions I want to carry forward. About celebrating the first snow day with my mother’s rich, homemade hot chocolate and Aunt Anna’s buns. About the way my parents always respected and solicited my opinion, even as a small child. I think about the ribbons my mother tied in my hair every morning before I went to school. I carefully save ideas and customs, and just as carefully put together a parenting philosophy.
Although these years in my 20s and early 30s are fairly quiet on the RA front, I know that with this disease and my disability, I cannot raise a child alone. I know I need a partner and although I have yet to meet the man with whom I want to spend the rest of my life, it’s always part of my future. Of what will come. Someday, I will meet that man and we will make a life together. A life that will include a child. Maybe even children.
I remember the moment I knew I would not have children of my own.
I am in my living room, facing the TV. It’s turned off, the blank void of the dark screen loud and vivid with the after image of the movie I’ve just watched. Nine Months Later, it was called, a fluffy bit of nonsense about a man facing his commitment phobia when his girlfriend gets pregnant. For some reason, the last scene of the two of them in the pajamas, dancing slowly with the baby between them has hit me hard. I`d looked at this construct on the screen and realized this would never be me. Realized that even if I found someone special, it would be years before we committed to the rest of our lives together and then more years for the adoption process. And that by then, I would be too old to adopt. Too old to have a baby. The weight of time is overwhelming as I realize that I will be too wrecked, too tired from my RA to give a small child what it deserves. That I am out of time and that which has always been part of my future cannot be.
I was 37 years old.
I am blessed with a circle of friends who have had children for me. Well, obviously they had children for themselves, but their generosity in sharing these wonderful little ones — many of whom are now grown — has allowed me to fill my life with kids, to be something for these kids, to play a role, to develop customs, traditions, and amazing relationships. I have two beautiful goddaughters, of whom I am immeasurably proud. I am the Other Mother to two wonderful and handsome boys (okay, young men), without whom my life would be much less interesting. I am Moster to my sister’s children and forever grateful that she shares them with me. And I am the (occasionally crazy) honourary aunt to so many other lovely, clever, gorgeous kids without whom my life would not be as rich as it is.
And I have my dream of a parallel reality in which I never had RA. There, I have two girls, lean and rangy with white blonde hair. I raise them on my own on an old farmstead and we are surrounded by animals. Cats, dogs, a couple of horses in the barn, a goat and some chickens. I have raised them with the traditions and customs and ideas I collected over the years. Our house is cozy and warm, filled with love and friends and great debates. On winter nights, we all pile into my bed, and sleep surrounded by the cats and the dogs while the snow howls outside.
* A Wiki link for Rigshospitalet for the non-Danes who might need an explanation: http://en.wikipedia.org/wiki/Rigshospitalet
**1979 was the dark ages of RA and much of the information they had then was wrong. There is approximately a 5% chance of a first-degree relative (sibling or child) getting RA.
Lene writes the award-winning blog The Seated View. She’s the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain.