Samantha Lee was in the middle of lessons one afternoon when she received the call from her gynaecologist’s clinic. “Immediately, I knew something must have been flagged,” the school teacher thought. “I called my husband, and together we took urgent leave to head down to the gynae’s clinic. I was in tears and I kept praying, but I think my heart knew that it wasn’t going to be a good outcome.”
At the clinic, Samantha and her husband were told that the non-invasive prenatal test (NIPT) she had taken indicated that their baby had a high chance of having Down syndrome (DS). “We were given our options: we could proceed with amniocentesis to determine with higher accuracy if the baby indeed has DS, terminate the pregnancy, or carry on with the pregnancy as per normal.”
Samantha was crushed. “I was in disbelief. I could not imagine myself having a child with DS.” Now, however, the mum of two says, “I cannot imagine my life without my son.”
(See also: Having a Baby with Down syndrome in Singapore)
Samantha, 39, is mum to Sophia, who turns six this November, and Joshua, who is 7.5 months old.
“To be completely honest, the thought of terminating the pregnancy was on my mind. It goes against my faith and everything that I believe in. But at that time, I really wished I was not pregnant, that I could somehow undo everything. I was overwhelmed with sadness, despair, anger, and bitterness.
My husband and I prayed together, cried together, discussed and had very honest conversations. Ultimately, we decided that we would not go ahead with the amniocentesis. This was to avoid any risk to the pregnancy. We would accept the baby and whatever outcome, and love him and raise him the best we could. I believe the change of my heart was really through the grace of God. But it doesn’t mean the rest of the pregnancy was a bed of roses. It took its toll on me emotionally. I kept praying and hoping that the baby would be born without DS.
We went for our detailed scan at around 20 weeks and there were no signs that would usually be present in a baby that has DS. I think that sort of gave me a bit more hope. But I was also mindful that it did not guarantee that our child would be born neurotypical.
I continued to stay prayerful and hopeful, but at the same time reminded myself to be grounded and practical and realistic too. So throughout the pregnancy, I was yoyo-ing between being happy and overjoyed at the prospect of carrying a healthy baby boy, and also grieving over the fact that my son would be different. It was emotionally taxing, having to juggle all that together with the demands of work, and also meeting the needs of my firstborn, preparing her to be an older sister.
“I started following Instagram (IG) accounts of mums who had children with DS, and support groups on Facebook.”
Additionally, I read up about DS. I wanted to be as prepared as possible. We stopped short of reaching out to families who have children with DS. It crossed our minds to do that, to understand better and be more prepared, but I think I was in denial. So I kept just having enough head knowledge about the condition, and following stories and accounts on IG.
Going into my third trimester, I was a little bit more stable emotionally and more ready to accept the outcome. When I started going into labour, I remember feeling hopeful and not scared at all. Hopeful – not because I believed that my son would not have DS, but hopeful that we would be able to thrive and live a full life no matter the outcome.
“My labour wasn’t too long and very smooth sailing.”
Because we had an NIPT test that showed a high chance of DS, there was a paediatrician (PD) who was already on standby to help do the necessary checks and tests. Our PD was a godsend. He first checked for visual signs on Joshua and shared that there were a few soft physical signs that he may have DS.
Because of the NIPT test results, he ordered a karyotype test to confirm and determine if Joshua indeed had DS. I will always remember his words to us, after telling us all the medical-related matters. He said, “At the end of the day, we will love our children no matter what. Joshua is in good hands.” It’s something that any parent would say about their children, but it was very poignant and encouraging to us.
Joshua had to be in NICU from the second day onwards because of pulmonary hypertension and weak lungs. Eventually, the karyotype test results came and we were told that Joshua has DS.
By then, we weren’t really shocked or surprised. From the day Joshua was born, we had sort of accepted that he has DS. Of course it was still emotional, but it wasn’t crushing or devastating. There were a lot of tears, but I think those were tears of closure that we needed.
“We were ready to begin life with Joshua, as special needs parents.”
In hindsight we are grateful for the time throughout pregnancy to prepare our hearts for the diagnosis.
There was a lot of information online and some books that were good resources. But it was the IG accounts that I followed that really helped me, like @happinessisdownsyndrome, one of the first accounts that I followed. From there, I started to follow more and learned so much. It gives me hope that my son has his own unique potential, his own set of strengths and weaknesses. He may be different, he may be a minority, but he is worthy and is a valued member of our family.
It also made me realise how much misinformation and myths I had regarding DS. I had a lot to learn and unlearn, to break away from limiting beliefs about people with DS and view them with new perspectives.
(See also: SNTC: Peace of Mind for Parents of a Special-needs Child)
“I suppose one of the hardest things was to break the news to our parents.”
We shared with our pastor, close friends in church and immediate family first. We were blessed with support from our inner circle from the very beginning.
Thinking from a parent’s point of view, I think they must also be heartbroken and sad for me. And it saddens me that they are sad, and worry for me. But I also received the greatest encouragement from my parents.
My mum told me to stay positive. She said that it didn’t have to be a sad story, and that Joshua would be loved no matter what. In his quiet ways, my dad showed his concern and care. He never stopped believing in me. My brother was super supportive right from the beginning. He linked me up with friends of friends who have children with DS, shared uplifting messages and articles with me, and prayed with me. If not for the support from my family, I wouldn’t have been able to carry on throughout the pregnancy.
I fear that I may never be able to have that close heart-to-heart connection with my son because of his condition. And that we may not be able to understand each other fully. But I have come to realise that my initial mindset of heart to heart connection was very limiting. I don’t need to have deep philosophical conversations to have a meaningful connection.
“After having Joshua, I’ve learnt that connection comes in so many different forms, it does not have to be intellectual and verbal all the time.”
When you do your research about DS, you will undoubtedly find a whole list of medical complications and health risks. By the grace of God, Joshua has had no medical issues right now. He goes for regular follow ups with many specialists — cardiac, ENT, eye, thyroid. So far, all is fine. But I also know we can’t take all these for granted.
My fear is that I am not able to help my son reach his fullest potential. I recognise that my own biases and outdated mindset that may be limiting. So I try very hard to unlearn all these and see my son as a clean slate. I just hope that I have the patience, the foresight, and the open-mindedness to help him grow and develop at his own pace and towards his unique interests.
In addition, I fear that my son won’t have a place or a voice in this society. I also fear that he won’t believe in himself, or that he will see himself as lesser than others. I’ve realised how we think about disability affects how we think about inclusion for people with disabilities. Our society is striving for inclusion but I think there’s still a lot of work to be done in this area.
“I hope my son won’t feel discouraged because he is different, but embrace his uniqueness. I hope he sees himself as valuable and is able to find purpose and joy in his life journey.”
One of the toughest things for us now is witnessing other families with neurotypical children, planning for a future that is more ‘normal’. We do not know yet what kind of education path Joshua will have, but we hope he will at least be admitted into a mainstream preschool.
We are aware that it won’t be an easy path to find a school that is able to accept and support his needs. But it is heartening to see more schools and teachers opening up and getting trained to receive children with varied needs. It encourages us to see more children with DS entering mainstream preschools.
Another personal challenge is when we see other families with neurotypical children who are close to Joshua’s age. It’s a constant reminder that Joshua will be different, and will have his own set of delays. All the other things that other children do, like speak, walk, run, feed themselves, change themselves, etc — we believe Joshua will be able to do all these and be independent. But he will have his own timeline. It’s not always easy to stop ourselves from comparing. The baby who was born a few months later than Joshua will probably learn to walk and run earlier than Joshua.
“But I tell myself that with Joshua, I am given the gift of time.”
I get to really slow down and watch him gain new skills each day, albeit slower, but it’s still very precious and meaningful to me.
In terms of early intervention, Joshua is in the DSA ITP program. We get lots of valuable support from the teachers and therapists there. Joshua is also in an EIPIC school for early intervention.
Our family dotes on Joshua and treats him the same way they treat my daughter, Sophia, who is turning six this November.
“We have not told her that Joshua has Down Syndrome.”
When we feel she is more mature and ready, we will share more with her. We’ve started reading her books about diversity and inclusion. We went to the Purple Parade last year, and had many rich conversations with her about disability, and how we should view people with disabilities.
We have also brought her, along with Joshua, to the Down Syndrome Association (DSA) for a ukulele introduction workshop. She was very excited to be there as she has been very curious about where her little brother goes for his weekly therapy sessions.
We brought her for the WDSD community walk with DSA as well. We believe in having open conversations with her as a way to prepare her when she’s ready to know more about her brother’s condition.
“I think there’s really no limit to what we can do, if we do it with love.”
Love can change our hearts and our minds. I used to think I cannot mother a child with DS. Now, even knowing that we’ll face a lifetime of struggles, challenges, potential heartbreaks, disappointments and possible rejections, I cannot imagine my life without my son.
However it’s such a paradox that even though I can’t imagine life without going through what we went through — I also don’t wish for others to have to go through this journey.
I used to dread when others tried to console me by telling me that I was chosen for this path, that I was special to be on this journey. I don’t know why it just doesn’t sit well with me, maybe because it further highlights the fact that it is a very lonely journey and it feels very isolating (to me at least). But I know that these are well meaning consolations and they come with good intentions.
(See also: Are You a Caregiver for Your Child? Please Read This)
“To parents who are expecting a baby with DS, I urge you to dig deep and find your true purpose in this.”
Amidst the chaos, the mess and internal turmoil, I think if we try to relinquish control over things, we can really do this! We can parent children with DS and still have purpose, freedom and joy — even the insanely happy kind of joy. 😊 Joy doesn’t have to mean the absence of tears, fear and struggles. Our children, DS or not, are worth living for, worth fighting for, worth struggling for. They all deserve our love. 😊
Learn and unlearn issues about inclusion and diversity. I think we need to equip ourselves with this knowledge so that we can better advocate for our children. In doing so we raise them up to advocate for themselves in the future too!
Every child brings their own unique set of challenges. I think it is important that we have our inner circle, our tribe, to rely on for support and strength. At the end of the day however, the support and love from your spouse is the most important. Sometimes, your spouse is the only other person who will know and understand and see what you are going through. So do all things to protect and nurture your relationship with your spouse. Be open about your fears and worries, share your plans and hope for the future. With unity of heart, you will be able to raise your child with DS and overcome odds together.
“Lastly, take time to grieve.”
We all begin our pregnancy with hopes for our unborn child. When one receives a diagnosis like this, one of the pain comes from having to deal with having all your hopes and dreams dashed. I would encourage parents to take time to grieve… give yourself the time and space.
I still get moments of feeling low and feelings of despair. I’m beginning to think maybe it’s something that we will have to deal with throughout our lifetime. But I believe they will come less frequently over time. If we persevere and make the best of what is given, we can cling on to memories of our highs. These can help us tide through the temporal phases of low. There is no hurry to announce to the world about your child if you’re not ready to. Do everything you need to protect your well being and your mental health.”
Photos courtesy of Samantha Lee