It's National Down Syndrome Awareness Week in Canada!

November 1st-7th is National Down Syndrome Awareness Week in Canada.

It is a week when we celebrate the abilities of individuals with Down Syndrome, we look at how far they have come and the bright possibilities for the future. While Down Syndrome is part of our lives everyday it is by no means definitive of who Ella is, or who she will become but it is because of her “disability” that God is able to use her in such amazing, profound and completely understated ways.

So why does there need to be a greater awareness of Down Syndrome? 30 years ago (and still in some parts of the world), Down Syndrome was a life sentence of institutionalization. Society did not recognize the potential or the abilities of these individuals – they simply saw a flaw in humanity but this is not the case. Stereotypes still persist that say they CANNOT and WILL NOT and it is only through awareness and the work of societies like the Canadian Down Syndrome society that the discrimination will stop and instead, resources will be made available to help these individuals fulfill their potential. This week I want to do a couple of things. First of all, I want to tell you about Ella. She is my pride and joy and her story is one of hope. Second of all, I want to share with you a bit about Down Syndrome: maybe some of you have no idea what it is, why it happens or what the effects are. And third I want to inspire you. I want to show you some individuals with DS that are changing the world just by being them.

I encourage you to ask questions. Ask hard questions. And confront the stereotypes you carry with you, overtly, or in the depths of your heart. I will if you will.

Let’s journey together.

Ella’s Story

There is a moment when every mother knows. For me it was around 32 weeks. The little legs growing inside me were just not kicking as hard as I thought they should be, as I remembered the pain I endured during my first pregnancy. I recalled how, by the end of the day, my ribs would be bruised from stretches, kicks and somersaults and my hips would feel likewise. With my second however, there were many times I consided going into see my doctor to make sure everything was as it should be but just as I would pick up the phone to call I would feel the reassuring movement telling me that my baby was alive and well and I would put down the receiver.

But I knew.

I knew something was different. I knew that the possibility of abnormality was there as we chose not to have any testing done. And while nobody said anything during my three ultrasounds, as I looked at my baby’s first photo and the few to follow, I knew they, too looked different from my first.

These are the things I never said when I was pregnant.

Labour came easy. It started in the wee hours of the morning and sporadically came and went throughout the day. I smiled through what I thought to be Braxton Hicks as I set about my tasks, refusing to allow myself to think that my baby might be on it’s way. I ran errands and made dinner and it was only by the time that I sat down to eat, that I considered that this might just be it. My mother sat with me as my husband taught music lessons and the contractions became stronger and stronger. When Ben was finally finished with his students for the night we began preparing to go to the hospital. Before we left, I took a bath to sooth the pain but instead,the pain only worsened and as I got out, I knew what labour – real labour (not the induced kind I had with my first) felt like.

When we arrived at the hospital, just a short drive away we went straight in and the nurse checked my cervix. I was 10 centimetres. She asked if I felt like pushing, but I didn’t, the baby hadn’t dropped and I didn’t feel any pressure. They broke my water and took me into one of the birthing rooms.

With each painful contraction, they told me to push. After sometime, I finally said…or maybe yelled, “It’s not moving! Just give me a C-section” They continued to tell me to push. I knew something was not right, the baby was in the wrong position, back on back and stuck. The pain in my back was horrendous. Unable to take anything for it, they injected saline solution into my spine – this, was more painful than the contractions themselves but it managed to ease the pain a bit following.

Seeing that this (being the baby) clearly wasn’t going anywhere, they called in the surgeon. He is well known in our town for his long slender wrists and working delivery miracles.

He managed to turn the baby and with a push and a pull, we finally met our sweet squishy Ella Freda on June 8th at 11:29pm. I didn’t hear crying right away but it came soon enough and they passed me my precious baby girl. Words cannot explain the emotions I felt in that moment- the complete elation that we had a baby girl and the complete horror, alarm, consternation, distress, surpass, fear, panic that I felt as I gazed into her eyes, saw her flattened bridge, her tiny folded ears and funnel chest.

I don’t remember who I said it to first but I needed to say it right away, “I think she has Down Syndrome.”

“No, she’s fine, she beautiful.”

And she was beautiful. And while I saw Down Syndrome before anyone else, I saw my daughter first. Her face was puffy, a little mis-shapened and blotchy from getting stuck but she managed to open her eyes and gaze up at me, her momma and there was no crying, no hurt or tears, no fear or hesitation. She was mine, the one I carried as God formed her little body and I was hers. Her little cone head was covered in fine brown hair and she had the most kissably little lips. As I studied all 7 pounds of her, I thought, if she doesn’t have Down Syndrome, then I really did get my asian baby after all. Because here is the thing – I thought she looked just like me. Sure, she has an extra fold of skin on her slightly slanted almond eyes, but so do I – one eye more than the other…just like Ella. I have an asian button nose just like Ella and I also have a bridged Palmer Crease, meaning if I bend my fingers forward slightly, it looks just like a single palmer crease which Ella also has but only on one hand. But I knew it was too good to be true and the suspicion lingered.

“I think she has Down Syndrome.” I said it again.

When you have these thoughts all you want is for somebody to tell you that you are wrong – that everything is fine and it will be okay.

And that is exactly what they did.

I told Ben, I told my mom, I told the nurse, I told anyone who would listen but I don’t know if I told them just so that they could tell me that I was wrong or if I told them so that I wouldn’t look naive. And they all said the same thing, “no, she’s fine, she is beautiful.”

All except one.

One nurse, one medical professional out of the many who were there that night and the only person in that room who responded to my concern did, however tell me that babies with Down Syndrome have a single crease across their palm (a palmer crease). As I laid there, still on the birthing table, we uncurled her tiny fist. There it was – as clear as the line on her little pudgy hand.

I can’t remember what the nurse’s response was, but everybody continue to just assure me that everything was going to be fine.

I recognize now, that they weren’t lying to me, even if they didn’t know she had Down Syndrome; everything was going to be fine.

I had a healthy, beautiful little girl.

But that moment will forever be marked in my memory. The joy of holding my baby girl will always be shadowed by the suspicions I had from the moment I laid eyes on her and I wish I could go back and do it again. I wish that I, like everybody else in that room had never considered the possibility of Down Syndrome or rather, I wish that I had known what I know now – that raising a child with Down Syndrome is not a burden but a blessing. I wish I had known that the trials are and will beoutweighed by the joy that Ella brings to everyday. And I wish that in that moment, I had the wisdom and the strength to give my whole heart, to the precious child of God I cradled in my arms…. without fear.

The halls were quiet as we were taken down to the Palliative care room. There was a another baby born in the small rural hospital that night and the room normally given to new parents was taken. This was quite nice for us, as the Palliative care room was well equipped with a coffee maker, my own bathroom with a shower, a murphy bed, and a serene view of the prairie’s vastness.

The night Ella was born and into the wee hours of the next morning my heart ached. I don’t think I cried but each breath caught in my heavy chest. It was a pain deeper than the labour I had endured the day before and longer than I had ever experienced in my life. And yet, in the stillness, God was there. He was there as I prayed without eloquence or poise the prayers that I did not know how to pray. I prayed that Ella WOULD NOT have Down Syndrome. How could I not? While it seemed like a prayer prayed far too late, a diagnosis had not been made; like Jesus in the garden before his death, “Father…take this cup from me, nevertheless, not my will, but yours be done”. I knew that he had knit Ella together in my womb and I needed to commit her to him and in that moment I knew courage and peace. Alone in the quiet I vowed to Ella that I would protect her.

Like most mother’s who have just met the little one they carried with anticipation for 9 months, I slept very little that night, if at all. And despite my fear, I was enamoured with this tiny body that grew inside me for all that time, intimately sharing everything with me from my waking to my sleeping, what I ate, the baths I took, the laughter of her older brother and the everydayness of this One Beautiful Life.

She was so content all night. Every three hours I would lift her out of the plastic bed and unwrap her fragile body and try to stir her from her sleep. She was difficult to wake and when I could finally get her to be interested in eating she would often latch for not even a moment before she would begin to suck vigorously on her lower lip, something she does to this day when she sleeps. I credit only the grace of God that I didn’t get frustrated. It took Ella three full days to learn how to nurse, but once she did, she was a pro and it became something which I savoured. Jakob, while he latched quickly, he ate even quicker causing much discomfort for both him and I. He would cry and then I would cry and nursing was something I dreaded. Not with Ella. She was calm and relaxed. She enjoyed it and because of this so did I.

God had granted us the grace we needed in the time we needed it.

In those next few days, between trying to get Ella to nurse and constant phototherapy for her jaundice I wanted so badly, just to settle into a diagnosis. But each time I brought it up, it was dismissed. The resident doctor even told me that she did not have Down Syndrome and the nurses wrote off my tears of frustration as postpartum depression.

We were in the hospital for almost a week. I was thankful for the time I needed to seal my bond with my daughter – time lay skin on skin, without nagging dishes or a competing two year old, time to nurse without the telephone ringing and time to know perfectly, my little girl from the brushfield spots in her eyes to her tiny little toes. Her skin tone evened and her little cone head became perfectly round. She was perfect and there were many times I thought about how much she looked like Jakob when he was first born. It was at these times I doubted my diagnosis.

Some cry a gut-wrenching cry, many weep for hours on end, but I have, my whole life been conditioned to be strong and, whether it be right or wrong, keep my feelings to myself and be the voice of reason. When my family fell apart as a child, I kept calm and carried on, so on the third day, when my doctor finally told me that he had had the same thoughts independently, I kept steady. I asked without wavering what made him think she might have Down Syndrome. He didn’t know-maybe the eyes. I could tell this was as hard a moment for him as it was for me. Ella was his first patient to have Down Syndrome and throughout the delivery he just kept saying that she was a healthy beautiful baby girl.
The thing about a small town is that everything is personal and everyone. It’s not just your plumber, but your neighbour, not just your doctor, but your friend and I often wonder what that night must have been like for him. Did he think about it? Did it keep him up at night? Did he tell his wife? How was he going to break the news to me that he too, thought that there might be a chance that Ella had Down Syndrome and if I hadn’t said anything, would he have?
But there it was. A referral to a Genetic Specialist at Alberta Children’s Hospital.

Ben’s parents and my mom accompanied us on our first outing with Ella. She cried for most of the hour and half drive to the city as I sat next to her in the back seat cheek to cheek and I told her it was going to be okay. It had to be okay.
The doctor welcomed us into an exam room and began to get a bit of our family medical history – no history of genetic disorders, no toxic exposure, overall, healthy parents with no apparent signs of disease. The doctor, in her gentle way, said that usually, after physically examining a child, she could say 90% yes they had Down Syndrome or 90% no, they didn’t. In our case, she could not commit either way. While Ella had many of the physical signs, she had very good tone and was very alert. As a result she requisitioned for a chromosome count. I think throughout the whole process, this was the hardest moment for me. I knew, I knew that if she could not tell me no, then it was yes but she would not say it. I cried silently, tears streaming down my face, as the Geneticist talked about the implications of Down Syndrome and as they took blood from my perfectly content baby girl I began to cry. The tears came as we ate lunch and as we drove home. The tears came and they didn’t stop because I knew and yet, I seemed to be the only one.

Finally, after what seemed like an eternity, on June 23rd, when Ella was just 2 weeks old, I received the call, confirming that Ella had 47 chromosomes instead of the normal 46.