Raising Jolie – Part 1

Hello. My name is Jacquie.

I am 39 years old and a new mom for the second time. As I write this, I am 7 weeks postpartum. My beautiful and perfect baby girl, Jolie Grace, has Down Syndrome. Here is our story so far and I hope that it speaks to someone, helps them through what is perhaps a really difficult time, gives hope and brings some small joy.

Getting pregnant the first time was not difficult, but I would venture to say it was something of a miracle, for lack of a better word. The news of that pregnancy marked a pivotal moment in my life and that of my husband Jesse’s, that is to say, our married life; staying together to see it through was the best decision we ever made. Our son Jules Lyle was born on December 13, 2016, in hospital via cesarean section. We were elated. He was perfect. He saved our marriage. Jesse and I became the solid, committed, loving unit I could never have imagined possible just 9 months before. And there we began our family journey as 3.

December of 2018 I knew I was ready to get pregnant and expand our family to 4, although Jesse was happy as we were. After some passionate discussions, we decided that we would give it 6 months and, if nothing by the summer, Jesse would get a vasectomy. The two of us took off on vacation to Mexico on NYE and came back 10 days later feeling refreshed and ready to start not trying. I took a pregnancy test at the end of January, 2019. Pregnant.

Welcome to: a whole new world.

At 10 weeks, everything normal. 1 babe. No worries, only excitement at imagining life with 2 kiddos. Our son would have a sibling and he would be the best big bro ever. He seemed excited about it even then! At 20 weeks, our babe looks like a babe and we decide we’re going to find out the sex this time… I had a feeling our babe was a girl and I really kind of wanted that since we didn’t plan on getting pregnant again. And since this was a tough pregnancy up until that point – sick and exhausted, I loathed going into work most days – I was happy it would be the last time. We went out for dinner, the 2 of us, opened the envelope and cried tears of joy because we were going to have a beautiful incredible daughter, our son would have a sis.

On the following Monday, I got a call from my midwife. There are abnormalities. I need to go for a follow up scan at the hospital this time. I didn’t go to Google to see what came up for “insignificant nose bone”. A doctor came in for our consult post scan and I expected “No worries! She looks like a perfect little baby! She was just in a funny position in your initial scan”. Instead we got “We can’t see a nose bone and this is a soft marker for Down Syndrome. I am booking you with a genetic councillor to discuss your options and the risks. We’ll book it soon so you can get your amnio results with plenty of time before the deadline for termination at 26 weeks”.

We were appalled and terrified. Down Syndrome?! Termination?! How could I possibly terminate that little beautiful life I was growing and that I had already become so attached to? How could anyone be given news like that and feel good about anything? How could a doctor just SAY that so nonchalantly based on a “soft marker” and completely disregard a human life like that? It was horrible. We felt so alone and so sad, having gone from elation and excitement about our baby girl to dread and worry. After all, we knew nothing about Down Syndrome. This doctor also found something going on with our babe’s heart so she made us an appointment with a fetal cardiologist. We were more concerned about the heart issue than the possible DS so in the end, we declined genetic counselling/amniocentesis as well as any follow up with that horrible doctor, but did go and see what was up with her heart.

It turns out she had VSD but there was no risk of heart failure, no issue with delivering the babe vaginally, and if there would be complications with the heart and lungs, they would only begin to present 4-6 weeks after birth. So, thoroughly understanding the situation, we decided to decline further followups with the cardiologist too. This heart defect also upped our chances of Down Syndrome since it is quite common in people with Trisomy 21.

We met with our birth team (2 doulas in addition to our midwife) and shared the news. We wanted to just enjoy the rest of the pregnancy. We wanted to live in the hope and comfort that I was growing a typically developing baby. We wanted to deliver her peacefully at home, in water, with no interventions or medications. We wanted them to be comfortable with our decision and they lovingly supported us 100%.

I had no idea about Down Syndrome.

We didn’t tell many people, especially not family. We didn’t want anyone to worry – we had been worried enough. I know we were both hanging on to the hope that our daughter would be born “normal”. I had no idea about Down Syndrome. When I envisioned my family, that diagnoses certainly wasn’t part of it. That was something that happened to other people, stronger people, “not me, not us”, I thought. So continuing my pregnancy as usual was exactly what I did and Jesse and I kind of forgot about the possibility all together…. or, rather, we stopped talking about it. The rest of the pregnancy was wondrous and chill. I can’t express exactly what it felt like, but I felt a profound peace about everything once we made our decision to decline any further scans, as though Jolie was reassuring me that she would be just fine, no matter the diagnoses. I took an early leave from work to enjoy time with my son before his sister arrived.

The morning of September 17, 2.5 weeks before my due date, I was cleared for a vaginal birth after cesarean (VBAC). I celebrated by picking up most of the things we would need for home water birth, including the pool itself! I picked up our son from daycare and by the time I got home, the menstrual-like cramps, which I’d been experiencing the whole night before and most of the day, began to change. 10 mins later, my water broke and I was in labour. Our doulas showed up straight away and made sure to “call the midwife!” who made it just in time, an hour before babe arrived!

3.5 hours later, weighing in at 5lbs 14.5oz our daughter Jolie Grace joined us, in the peace and calm of our own home, just like in my dreams. Jesse caught her and laid her in my arms. After the most intense experience of my life, she was here! I looked into her perfect little face and I knew our little girl had Down Syndrome. I kissed her all over and cried tears of happiness and love. Nobody said anything about DS, I thought maybe I was imagining it. Our midwife simply wanted to give us that special sacred time of just being with our baby girl before confirming what I (and I’m sure my husband) already knew. In those precious first minutes and hours of her life earth side, the Down Syndrome didn’t matter. She was breathing, a beautiful warm colour, her heart was beating, she cried, she latched on to my breast perfectly.

She gave us hope and a glimpse of the kind of joy we didn’t know could be possible…

The 2 weeks following her birth, were the most difficult days and nights of my life. I fell incredibly ill the day after I delivered, plagued with intense and recurring fevers and the harshest most constant cough. I was delirious and couldn’t nurse Jolie as often as I likely should have, taking advantage of her sleepiness. I was diagnosed with severe bronchitis a week later and started a course of antibiotics which thankfully began taking effect within 24 hrs. During that time of deliriousness, I went back to hoping she didn’t have DS – I just couldn’t see it! My husband would try and talk to me about DS related things and I wouldn’t hear it. When the pediatrician confirmed the soft physical markers (almond eyes, flattened nose, extra skin fold on the back of the neck, lower set ears, etc.), it was as though I was thrown back to that moment at 20 weeks pregnant hearing it for the first time. I balled my eyes out. When I got home, I knew it was time to face up to it. How could I not? She was our daughter and I was deeply in love with her. She needed me! My husband and I both are forever grateful to the woman who would be our first point of contact with someone in the Down Syndrome community. A mama of a pre-teen daughter, a very active advocate in the DS world here in Edmonton, shared her experience and not only calmed our souls about everything, but she gave us hope and a glimpse of the kind of joy we didn’t know could be possible. We felt validated and like we were not alone. She offered her hand and we took it. Thank you Shelley.

Since that meeting, I am able to see and feel my power as a woman, a pregnant woman, a labouring woman, a postpartum woman, a woman who birthed a chromosomally-enhanced life into existence. That labour was magical. The whole pregnancy, through kicks and jabs, she let me know that she would thrive and be a force of nature that would change me forever.

A roller coaster ride…

Of course we are going through our ups and downs and, at just 7 weeks postpartum, this roller coaster ride of emotions isn’t over. We had/have to grieve our vision of what life was supposed to be like, lay to rest our expectations of raising a typically developing child, and open our eyes to this new adventure, this new place we are headed. I still have my moments, like right now as I write this, I cry. But we love our sweet baby Jolie! A baby like any other baby! Everyday, we learn more about each other and ourselves. I love the way she clutches my thumb, brings it in close to her, and all her gentle cooing sounds while she nurses. I love the way Jesse looks at her and lets her suck on his nose to soothe her if she’s upset. I love the way she calms right down in his presence. I love remembering the morning after she was born when Jules came home and ran into our bedroom asking about his sister “did she pop out mom?” and the look on his face when he saw her: pride and joy and wonder. He still looks at her that way and kisses her when she cries and it just warms my heart. I love watching people’s first reactions when they meet Jolie and it’s this look of absolute peace. She has such a cosmic effect on everyone!

Raising kids isn’t easy no matter what kind of child you have. I am beginning to understand that every child has their specific needs and that regardless of diagnoses, typical or atypical, we care for our children in the way that they need. If our son has a health issue, we see to it. This will be the same for Jolie. Sure, with Trisomy 21, there are predispositions to health issues and there have been and will continue to be appointments to check on and manage as necessary. We take care of her needs. It’s what we signed up for. What really gets me, and what I am learning my way through, are those preconceived assumptions of what Down Syndrome is. Not long ago, babies born with any abnormality were often sent off to institutions and left there, unloved, untouched, discarded. The statistics shared with new parents about the “risks” are based on people who were not given a chance at life. This is so incredibly horrible to think about. ANY baby who is not loved, touched, held, engaged with will not flourish. We are determined, like many parents are now, to change these stats and show with pride and joy that these lives are worth everything.

I am excited to be Jolie’s mother, friend, advocate. I am excited to head down this unexpected road to an unexpected place and discover all the beauty and joy along the way. I am excited to write about it here and inspire anyone, as Shelley inspired us, who has had a similar diagnoses to not fear or fret!

I am 7 weeks postpartum and I am holding my hand out to you. We can do this.

Ps. Today, she smiled up at me, responsively, for the first time. There are no words to express the kind of remarkable feeling that first real smile brings. And when my husband entered the room, she locked eyes with him and shot him a smile too. Boom. It’s all worth it. She is truly magical. And your baby is too!