Initiation project is a conversation with my daughter Sofia, who has Down syndrome. With her help, we reconstruct her arrival in my life, exchanging our roles in order to relive this initiatory journey full of emotions and rich in twists and turns. In order to better feel each other’s emotions we exchanged our roles. I honestly told Sofia how I experienced the acceptance of her Down syndrome, and later her concomitant diseases, and she masterfully played out the situation for my camera. At the same time, I played her role, staging scenes as I remember them.
When my daughter was born, I was 24 and I knew nothing about Down syndrome. Experienced obstetricians saw her diagnosis immediately at birth, and a few days later it was confirmed by a blood test. Nobody could tell me how to live with that unexpected event but they said I could go away and leave her behind in the maternity. There would be no questions. Today my daughter is a beautiful young woman yet her disability will always be a part of our lives. She is now old enough to ask me what her birth was like. And when I tell her about how she came into the world, I always think of the Down syndrome babies abandoned by frightened young parents.
Down syndrome is one of the most common genetic anomalies in the world. However, prenatal diagnosis has made the birth of such children relatively rare: in France, 96% of mothers, who find out about Down syndrome during pregnancy, abort. And one in ten babies born with Down syndrome is abandoned by its parents.
Initiation aims to help young parents who feel the earth slipping from under their feet because their baby has Down syndrome. I remember how difficult it was and I hope they will find their questions answered here. I also hope that my project will help viewers rethink their beliefs about people with Down syndrome and their families. I am sure we have a lot to learn from them. Sofia’s high empathy, incredible kindness and unwavering vitality became my source of inspiration.
The gynecologist, writing out a prescription for blood tests, asked me:
-Do you want to do a screening?
-What for? The baby has a head, two arms and two legs, I think that’s enough.
-Do you know what Down syndrome is?
-I haven’t personally encountered it, I admitted honestly, but if the baby wants to live, it will live.
The feeling of overwhelming guilt never left me much later when I realised that the question was different: not “why?” but “for what?” and that opening another door did not mean making the wrong choice.
The geneticist brought the test results straight to my hospital room. What everyone had guessed became official reality.
-What’s the difference between these kids and others?” I finally articulated.
-Basically, none. Up to a year you can live as planned, there will be no difference. My friends have such a child, he continued, he is often constipated. They put a stool in the toilet, to put under his feet, so it’s easier for him.
He said many other words, and probably most of them were meant to encourage young parents, but I didn’t hear anything: “buy a stool” was going round and round in my head. Live your life as planned, just buy a stool.
Again and again, I went over my whole life in my head. What could have gone wrong? I remembered what I ate and drank, what I did, what I was sick with. Even bad thoughts seemed like enough reason to “punish” me.
I didn’t think about myself, I worried most about what my daughter couldn’t do in her life. Her “won’ts” were much weightier to me than mine: she’ll NOT learn several foreign languages, NOT go to university, NOT get married, NOT have a baby…. It seemed to me that sooner or later she was bound to ask me “why everyone but me?” and I would have no answer except “I’m sorry, it’s my fault”.
Everyone knows the stages of grieving: denial, anger, fault-finding, bargaining, depression, acceptance. But how do you navigate this inner journey with an infant in your arms? Once in that situation, you put your own emotions on stop. You carry while you have strength. You drag when you can’t carry any more. You push when you can’t drag. You fall down and get up. You walk again and again, searching for a solution. You cannot be weak because your child’s life depends on your decisions here and now.
I have been tirelessly looking for physical markers of handicap in my baby: I wanted to understand what was my daughter’s particularities and what was Down syndrom stigmas. Little low-set ears – is that a bad thing? What are the ears of other newborns? She was my first child, so sometimes I dreamt that I had two children at the same time: Sofia with an extra chromosome and normotypic Sofia, to finally see that difference.
Why me? Why her?
Tears were flowing from my eyes around the clock. I think I could have filled a small lake with those tears.
I don’t know exactly what I was mourning, my eyes were obeying their own laws. My husband was a little afraid that I had gone mad. I was crying non-stop, but at the same time I led a very normal life, eating, sleeping, talking and even laughing.
The tears ended abruptly, as if someone from above had turned off the tap: two weeks later I just woke up and started a new life.
“Up to a year as planned”, we have to make it.
“As planned” lasted exactly six months. As it turned out, during this time you can get used to the change of route, and even start living quite happily. Life was scheduled by hours: speech therapist, physiotherapist, massages, stimulating games…. Sofia was developing very well and practically kept up with the age norm. Nothing at that time foreshadowed the ordeal that soon fell on our head. One day, I noticed my daughter folding herself ridiculously in half, as if nodding to someone invisible.
The encephalogram revealed a dense tangle of Sofia’s thoughts and mercilessly pinned me to the chair – West Syndrome. A rare, aggressive form of childhood epilepsy. The prognosis is poor. Each seizure causes permanent brain damage. High pharmacoresistance. High mortality rate. High rate of profound mental retardation in case of survival.
It was not that that surprised me, but the horror I saw in her eyes. Thus began a new circle of hell.
We got lucky. In this horrible game, Down syndrome was the trump card that overrode West syndrome. The first time Sofia took the medication, it stopped the epilepsy and… turned my daughter into a rag doll.
-Will she be able to move? I asked, smearing tears down my cheeks.
-Time will tell, the doctor replied, hiding his eyes.
-This is the end, I flashed in my mind.
Pregnant, I wondered what my ideal child should be like. A boy? A girl? Blond or brown haired? No, that was not important, I disired to meet a beautiful person – intelligent, sensitive, reliable, strong and kind. After the announcement of the first diagnosis, I imagined that Sofia inside was exactly that, she just needed time to manifest. West syndrome napalmed my dreams. An ash flavoured future is all that’s left of my hopes.
I read, an incredible amount, in every language I could find. I opened medical directories, went to the place “prognosis unfavourable”, closed and looked for a new one. I wanted to know that there was at least one person in the world who had been through this and was living a normal life. A tiny spark of hope would be enough.
Sofia’s muscle tone was so weak that she could not even cough. When common childhood respiratory viruses began, she just started choking. No doctor knew what to do to help her, numerous medications didn’t work, and the list of ailments only lengthened. The “intensive care unit-discharge” cycle became our new reality. We had an oxygen concentrator at home, and we left the house with an oxygen tank over our shoulder.
At night, I continuously listened to the rhythm of her breathing in order to adjust her oxygen mask in time, blow her nose, add or reduce the oxygen pressure. Nightmares did not torment me any more, they became reality, but it was her who was suffocating instead of me.
The last straw was the intensive care unit, where she was taken by helicopter. After 10 days of intensive care, the chief physician of the largest children’s hospital announced:
-The situation is critical, we have tried everything. In her condition only a lung and heart transplant could help her, but due to her diagnosis she’ll be at the very bottom of a huge waiting list.
-How long do we have left?
-About three days, then we’ll switch off the ventilator.
Against all odds, Sofia managed to breathe through the oxygen mask on her own, and after a few days she was moved to a regular room and then discharged. A long period of rehabilitation began. Do you know that a week of intensive care is about a year of rehabilitation? She was in an induced coma for a fortnight. That’s when I realised two things: there was a huge amount of strength in that tiny body and she was fighting. From then on, we were fighting together. One step at a time. From stool to stool.
Sofia doesn’t remember anything from that terrible year, but sometimes she says to me: “Mum, you’re the best, you saved my life!” And I correct her: “No dear, I gave you life, but it was YOU who saved us both.”
We are often told that we have a special bond. She’s really willing to do the impossible for me.
I’ve seen it with my own eyes.
Elena Kuzin (1982) is a French photographer working at the crossroads of documentary and art photography. Born in Crimea, she settled in France in 2002. Elena explores issues of trauma, identity and individuality. Her personal projects have been published in numerous on-line and paper magazines (Private Photo Review, Eye of Photography, Republic, PHMuseum, IconicArtist, etc).
