“Dear, I am pregnant.”
I remember saying these words to my husband in December 2010. We already had two beautiful children, Estelle, 11, and Ezekiel, 9. We were not expecting a third child. Little did we know that the birth of our third baby was going to be a life-changing experience for all of us.
In the space of one morning, I experienced a birth and a death. I gave birth to my second daughter, Ellyssa. Just as husband and I were basking in the happy moment, the paediatrician came in with a solemn look on his face. He asked the question that would change my life, “Do you know what Mongolism is?” It was such an archaic term, and one that is hardly used nowadays, that I did not immediately connect it with the more common one — “Down syndrome”.
“In the space of one morning, I experienced a birth and a death…Not a physical death, but a death of an expectation – that my child would be a neuro-typical baby.”
As the paediatrician explained about the condition, tears rolled down my cheeks and I experienced a death. Not a physical death, but a death of an expectation – that my child would be a neuro-typical baby. Then shock kicked in. How I was going to bring up a baby who had Down syndrome? After the paediatrician left, my husband and I hugged and cried. We were not expecting this. There were no indications during the pre-natal checks. The detailed scan did not raise any alarms. And just like the first two pregnancies, we did not do any test to check for foetal anomalies.
Ellyssa and I spent three weeks in the hospital. She had serious jaundice and had to undergo phototherapy daily. So I had my confinement in the hospital. These three weeks gave me time to reflect and pray. I started a journal to record my thoughts and feelings. It is amazing how one’s emotions and thoughts can go through such roller coaster changes. Mine went up slowly and down so fast, I barely had time to take my next breath.
The First Year
The first year was bad. I cried buckets of tears everyday. I had so many doubts and fears and I wondered what Ellyssa’s future would be like. Another fear was growing old because I worried who would take care of her when I was unable to. I was amazed at how much tears I could produce in one day. The reality that I was responsible for this tiny life made me feel burdened.
“The first year was bad. I cried buckets of tears everyday. I had so many doubts and fears and I wondered what Ellyssa’s future would be like.”
Thankfully, my two older children love their sister. They were excited when their sister came home from the hospital – finally, they could play with her. I did not share with them about Ellyssa’s condition in her first month as I was dealing with my own emotions. I told them when Ellyssa was 2.5 months old. It was my hope, I told them, that we would grow as a family in love and unity.
Making Slow Progress
The hospital became my girl’s second home. We were there often for her therapies and medical check-ups. Because of her low muscle tone, she was a floppy baby, so she needed physiotherapy to strengthen her body. This was to help her achieve the developmental milestones of sitting up, crawling and even walking.
Hearing tests were necessary to ensure that her speech development would not be affected. She has a hole in her heart so she needed regular checks to monitor that and to ensure that the defect does not affect her overall health. Her vision needs to be checked regularly as she has Nystagmus (repetitive, uncontrolled movements of the eyes). This results in poor vision and depth perception, which can affect balance and coordination.
Ellyssa’s progress was very slow initially. She took a while to meet her developmental milestones and I could not help but compare her to her peers. She only walked at 18 months. It was agonising and tiring to keep bringing her to all the medical appointments.
Facing Hard Times
I have vague memories of the first World Down Syndrome Day Buddy Walk which we took part in to support World Down Syndrome Day which is celebrated on 21st March each year. Ellyssa was 1 year old then and we decided to go for the walk to help raise awareness of Down syndrome.
As I walked along the streets, I could not help but cry. The grief was still very raw. My husband held my hand tightly and we finished the walk with heavy hearts.
I could not see the light at the end of the tunnel then. The future seemed so bleak that I almost gave up wanting to do anything for her. It is a very humbling experience to have a child with Down syndrome. The curious stares, the non-spoken judgement, the looks – all speak volumes to me whenever I bring my girl out.
“It is a very humbling experience to have a child with Down Syndrome. the curious stares, the non-spoken judgement, the looks – all speak volumes to me…”
One incident stands out. We were at a supermarket. Ellyssa was two years old and in her exploration mode. She reached out and before I knew it, two boxes of eggs came tumbling down from the shelves. The damage by the eggs was contained, but the stares and pointing from some people in the supermarket hurt my heart.
Finding my Support Community
Support came in the form of family and friends. Through my girl, I realised the importance of belonging to a community. Not just any community but one I know will walk with me, run with me, or just stay put with me. A community that does not judge. A community that sticks with me.
I joined the Down Syndrome Association (DSA) which assigned a parent mentor to me. My parent mentor helped a lot, even doing home visits late in the night to support me emotionally. DSA also conducts workshops and I found myself connected to mothers whose children are the same age as my girl. We started a chat group and met up often.
This community also includes her elder sister and brother. My older children embraced their little sister since the day she was born and taken her under their wings. They play, eat and squabble together. Ellyssa likes to sing and has memorised most of the Disney cartoons’ songs. Her favourite song is “How far I’ll go” from the movie Moana. She likes to dance and holds weekly mini concerts at home with her siblings.
Changing my Outlook
But the biggest change is my outlook on life, which is personified by these words on a bag that I carry. It says “Every day may not be Good… But there is something Good in every day”. I have become more positive and less complacent. I do not take things for granted now.
My faith has also kept me going. Knowing that I am not alone in this journey gives me the strength and courage to face whatever comes. The comfort and peace from my faith gives me hope to see into the tunnel of Ellyssa’s future. With this change in perspective, the future does not feel as bleak.
“My faith has also kept me going. Knowing that I am not alone in this journey gives me the strength and courage to face whatever comes.”
I used to be cautious towards people with special needs as I did not have much interaction with them while growing up. I had fears about them, and how to interact with them. Now, I help to run a programme for children with special needs in my church, something I never dreamt I would do.
My Daughter, a Fighter
Now, seven years later, much has changed. I am not crying every day, just occasionally. Most days, I rejoice in Ellyssa’s progress. Her big smile is my reward. Her chatty talk is something I enjoy.
My girl is cheerful and active. Most of all, she is a fighter. Last August, she had Henoch-Schonlein Purpura, an inflammation of small blood vessels that causes blood vessels in the skin, intestines, kidneys and joints to leak. There is no specific cause for the disease. The main symptom is a rash with many small bruises, which have a raised appearance, over the legs and buttocks.
“Most days, I rejoice in Ellyssa’s progress. Her big smile is my reward. Her chatty talk is something I enjoy. My girl is cheerful and active. Most of all, she is a fighter.”
This disease is not related to Down syndrome. Doctors speculated that it could be a result of a flu she had a few weeks before, which caused her immune system to overreact. She vomitted and there was blood in her stool. She had to be admitted twice in the hospital for treatment. Each admission lasted five days so my husband and I took turns to stay with her in the children’s ward. She endured the intravenous tubes and blood tests, and emerged victorious. The doctors were impressed with her. My husband and I were proud of her.
An Unpolished Gem
I see my girl as an unpolished gem in the midst of being discovered and polished so that she can shine brightly for the world. I love her friendliness and compassion. Whenever her older siblings are sad, she takes the initiative to comfort them. She is drawn to babies and young children. Once when we were waiting for our number to be called at the hospital, we met a mother who was with her premature baby. Without hesitation, Ellyssa went over to greet them. She made funny sounds to entertain the baby and kept telling the mother that her baby was cute.
“I see my girl as an unpolished gem in the midst of being discovered and polished so that she can shine brightly for the world.”
Ellyssa has made me a more open person, willing to talk to strangers and share experiences. I now have the courage to do the things I thought I would never do, like sharing my story here. My family has grown closer and we spend a lot of time outdoors, having a more active lifestyle compared to before.
Having a child with Down syndrome is not a walk in the park but it has brought so much joy to our family. The bond within my family is strengthened and we face the future knowing that we can count on one another. To all mothers who have children with Down syndrome, don’t allow the challenges you face – physical or emotional – to pull you down. Instead, see the greater purpose of our children and encourage them to fly where they can thrive. Let us be the light for our children; they are gifts to be treasured.
Adeline Koh currently serves in COOSkidz’s Sunshine Ministry and is a stay-at-home mother with two daughters and one son. She loves food and books, and indulges in Korean dramas when she is not busy with home and children.
This article was first published on March 21, 2018 in SingaporeMotherhood.com. Reprinted with permission.