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By Sally Felkai
I was moved to write A's birth story in honour of her 7th birthday but also because I didn’t like the way it went. I didn’t and still don’t like that horrible moment when I first knew she had an extra chromosome. I wanted the bigger story written down for her and for other parents in similar situations. I wanted to write the story again and again until it contained all the possibility of her light.
7 years is a long time. I like the apocryphal idea that our cells replace themselves every 7 years and therefore we are new people. Who have I shed since that crazy time when she was born? Who has replaced her? A lot of heavy stuff came off in the first year. My despair when I first saw her face and the darkness of not being sure if I could love my child; all of this had to go of course but it needed its time to be there in the newness of doubt and shame and circumstance.
It took a long time to get pregnant. I had had a miscarriage the year before and I felt the fragile miracle of life I was carrying. There were signs of something being different but I was oblivious. There was a scare that her heart had a deformity and inconveniently urgent appointments with specialists and geneticists. No one ever said Down Syndrome and at one point I asked about it because I had not done any testing. I told God I was open to anything but I really didn’t think anything but a perfect, amazing, healthy ‘typical’ child would be on its way. Another ultrasound for birth position alarmed me as the technician stared and stared and asked me if my first child was ‘normal’. This was super upsetting but still, I didn’t clue in.
My contractions started after a long day of walking and pushing a heavy 4 year old in a heavy stroller up and down the hills of our neighbourhood going from birthday party to Employment Insurance office to sort out my paperwork for my maternity leave. It was 10 days before my due date and I had just wrapped up work. Big brother was 10 days late so I was sure I had loads of time. Here it was all starting and I didn’t even have a diaper in the house. That night was wakeful with the contractions continuing occasionally. Not terrible but not something you could sleep through. The next day, a Friday morning, I had an interview with a doula. She arrived and we chatted briefly and I half-jokingly said, you seem nice, what are you doing now? And so we went with it. Her presence was reassuring and needed as I really had no clue how to tell when things were really moving. My first child took an epically long 70 plus hours and I had no perspective.
Things got intense pretty quickly. By noon I had arranged childcare for my son and had started to get a few things in a bag to go to the hospital. My son was a planned home birth but we needed help so we went to the hospital. This time, I was ready to go the hospital so that I wouldn’t have to have that dreaded car ride while in full-on labour. I was counting on the doula and mid-wives to make the call. I walked around and leaned on counters for the intense ones. One of the midwives was an amazing cook so she fed us. My team came and went. T was on alert as was my sister and my good friend. Time was moving so slowly. It was turning inside out, just like me. I breathed when I remembered to. The midwives checked in a few times. The doula put pressure on various parts of my back and legs to help with the intensity. The team gathered. The midwife, the trainee, the assistant, my doula. Someone said, if we're going to the hospital we should be going now. That came in from very far away. It took hours to process it. I'm not getting in a car now I thought and it turns out I said it aloud. Great! said the midwife ready for anything. Tell your husband to buy a shower curtain and get home fast, your little one is coming. The intensity really spiralled up at that point and I moved around from bed to kitchen to bathroom to living room in a circuit of pain and leaning on stuff. Eventually I circled to the plastic covered bed and writhed around realizing we were way past a chance for an epidural. I was still incredulous that (s)he could be coming so fast given my previous experience yet each breath was a lifetime and each cycle of pain interminable. The midwives tell you that each contraction is one that you never have to have again. I couldn’t help thinking that some were more effective than others and therefore there could be wasted contractions that had to be done over. Why my brain needed to fight that determinism at that moment is a mystery.
The pain shifted to the pushing pain. Not easy but different, more linear and somehow easier to convince myself I had more control now. Ha! As if we can control any of the mystery of birth or death. As if we can do anything but ride the experience and hope for the best. T was there. Faces, pain, wanting my son close but glad he couldn’t hear the certainly terrifying noises mommy was making. More pushing and a feeling of being completely split open and still more and still more and then way way down a long tunnel, blessed relief. T caught her. I first saw a little bum and a vagina. A girl! I could burst I was so happy.
I turned her toward me and as I saw her face, I sunk into a dreadful certainty that she had Down Syndrome. I said it aloud and the midwives quickly checked her heart and lungs. All was well. They checked for other markers but could not conclude without a blood test. They kindly and wisely advised that we get the test in a few days but first just get to know her. Again, I was hearing all this from very far away. I was projecting into a future of great sadness for the person I had brought into the world. A person who would never grow up and be independent and fulfill her dreams. I was also asking God what I had done wrong. I was old to be giving birth by biological standards if not societal standards so it had to be all my fault, my terrible responsibility that I would carry for the rest of my life. What had I done to my son? To my family? To this poor child who hadn’t asked to be born.
I was drowning. I was going under in the sea of disability. My husband held his sadness in the stoic Nordic way and held her close and just said ‘She is ours’ even as she pulled off his glasses and tossed them in an almost comical foreshadowing of things to come. My son loved her right away after having railed against the idea of a sibling for months. They seemed to be handling this crazy disaster but I needed a lifeline.
The first lifeline was teaching her to nurse. We had a lactation consultant who emphasized that nursing would promote her immune system and strengthen her jaw and tongue so she’d have clearer speech. A project. An important project. I grabbed on to it for dear life. There was no time to worry about the distant future when I had to focus on ensuring I was doing the best thing for her right now. She had low tone so she couldn’t latch and get the milk to come. I had to pump and feed her with droppers at first. Then there was a subproject of choosing the right type of bottle, one that would make her work that jaw. The cycle of pumping and feeding and cleaning the pump and starting over every 3 hours left me almost no time and no sleep. T held things together as best he could but soon he had to work and leave town for a project. That left me with a high needs baby in an intense situation and a preschooler on my own. Looking back on it now, I can’t believe how it all unfolded and how somehow, step by step, breath by exhausted breath, we pushed through that time. I have faith, I pray, I talk to God. I am also a sort of high needs baby in faith. I whine and cry when things are way way harder than I can handle on my own. I’m a bit of a wimp, especially in the context of the women who went before me. I cried out, a lot. AND I was surrounded by support.
The second lifeline was help and community. Luckily I had the strong urge to ask my mother to come. We were not as close as I would have liked but late in my pregnancy there was a moment when I recognized I needed her support. I cast off my independent stance and asked her to please come. She did. It worked out that she arrived about 10 days after the birth. I had also decided to forego a 2nd baby shower for a meal train, guessing that things would be intense with a newborn and a toddler. I had no clue how intense it would be but this was another lifeline. Meals arrived and people stayed to drip milk into little A while I gave her brother some much needed attention. It was in this period that I started telling him his birth story over and over to ground him and give him a sense of the momentous time we were in and how he was an important part of his little sister’s story already as she was of his. I still thank God for all the people who did what they could, many close and some who barely knew us but wanted to help. There was my close friend who hauled her friend over to clean my house (including the gross stuff) and serve me a hot chicken dinner. She also used her skill in homeopathy to help. There was my great friend who arranged the meal train and had a quilt made for the baby and brought food. My sister who came as often as she could to feed us and handle one of the kids so I could hang out with the other one. There were many other wonderful friends and neighbours who all brought food multiple times. And then there was my Mom who insisted on taking a few night shifts for me so I could get 4 hours of sleep in a row. There was the amazing fact that we had no health issues to deal with and only one hospital visit for the confirming blood test. There were my midwives and my doula who continued to check in through the nursing ‘project’ and beyond. There was their skill in using homeopathy to clear up an intense mastitis situation that can be common with pumping. There were midwifery and doula students who volunteered to come and help out as part of their course hours requirements. I did have to scramble on my own through some days but overall, I felt held up or propped up sometimes but up.
The third lifeline was Polly Marchenko. We succeeded at project nursing between the 6 and 7 week mark. It was amazing on so many levels. The impossibility of it all, the joy of the bonding, the sudden assuredness of this little person claiming what was hers. The sheer practicality of input and output happening simultaneously instead of in awkward series felt like a miracle. So the three of us (myself and 2 kids) got on with the business of living. There was so much freedom now. I was merely dealing with the busyness of having 2 kids. It really felt like no problem at all as long I got enough to eat and a few hours of sleep. We packed up and hit the road to join T at his work location and to explore a new town for a little while. I kept big brother occupied with gym drop-ins and walks to parks and we would all meet for dinner later at the house we stayed at. During rare quiet times, I researched Down Syndrome. I was tentative because as many a new mother to a child with a disability will tell you, the official literature is not too hopeful. There are loads of dire sounding technical terms and statistics which I understood but couldn’t bring myself to believe. Then I stumbled upon a blog about Polly Marchenko. Her mother, Gillian, a beautiful writer posted pictures and stories about their life as a family. I learned of Polly’s dramatic birth in the Ukraine where her family lived at the time and their subsequent move to Chicago. The particular exchange that birthed a new hope in me was a conversation between Gillian and Polly where G tells her she was afraid of her when she was born. Polly just cracks up like that is the craziest thing and of course from my vantage point now, it clearly is but in the moment of just peeking out of a hole of despair and fear that conversation was like a clear tone of truth from a friendly future. Polly inspired me to find other families and they all inspired me to start sharing our story too.
The story isn’t done yet. The birth story isn’t even done yet. That birth started a process of peeling off layers of perception, emotion and expectation which continues today for all of us. That birth was a difficult surprise but the subsequent joyful surprises continue. If you’re reading this and you have a baby or young child or a relative with an extra chromosome, I invite you to consider that maybe this unthinkable new reality you are living is a great and rare gift. Maybe you too are being birthed out of who you thought you were and what you thought mattered into a new clarity of what really does.