Shumin: Hello everyone, welcome to The Extra Mile SG, a podcast sharing stories, reflections, and practical wisdom from people whose lives have been touched by Down syndrome in Singapore. I'm your host, Shumin, and today I'm delighted to be joined by Mary. Mary was actually one of the very first parents I connected with after Mia was born when I joined a WhatsApp support group that Mary started many years ago for mums of children with Down syndrome. Some of you may also know her through her blog, Simply Lamb Chops, where she writes about her family and her journey with her daughter, Kayleen.
Mary, thank you so much for taking the time to join me today. To begin, maybe you could tell us a little bit about yourself and your family, and also share a little bit about what Kayleen is like.
Mary: Okay, sure. Hi everyone. I'm Mary. I have three children. I'm a Christian. I'm an ex-secondary school teacher. I taught Chemistry and Biology at school, and I'm currently a tutor. I'm also serving in the children's ministry at church. I found that I enjoy working with children, so that's what I'm doing currently.
My three children are 21, 18 and 15. Kayleen is 15, and she's the youngest in my family. My husband is a civil servant, and we both serve in church together.
Like you said, I used to blog—not so much anymore—but my blog is called Simply Lamb Chops. Sometimes in the past, when I met strangers, some of them would say, "You're Simply Lamb Chops!" So once in a while, I go by that name.
Shumin: Just a curious question—why Simply Lamb Chops? It's a very interesting name.
Mary: Many people actually ask me that. When I was thinking of a name for the blog, I asked some of my close friends for suggestions. They said, "Go with your name, Mary." Anything with "Mary" always gets paired with "lamb", like Mary Had a Little Lamb. At that time, I think there was also a site that had a similar association with Mary and lamb, so I didn't want to be associated with that.
When I was pregnant with Kayleen, my pregnancy craving was also lamb chops. I couldn't eat a lot of things, but somehow when I had no appetite, lamb chops would be the first thing that come to my mind. With the mint sauce and the cranberry sauce, it really just opened up my appetite.
So my husband, I think, someone suggested, "Why don't you just use the word Lamb Chops instead?" And that's how the name came about.
Shumin: How interesting. Does Kayleen like lamb chops now?
Mary: Come to think of it, I have not let her try lamb chops before. I think I should, right?
Shumin: You should! Maybe that's something she's been waiting to try her whole life.
Thanks, Mary, for the introduction. Could you share a little bit more about Kayleen? If someone has never met her before, how would you describe her?
Mary: Kayleen is 15 this year. Over these fifteen years, I see joy in her. I see love in her. I would describe her as someone who is very joyful, very childlike, and full of God's love.
When she was very young, from about one and a half to five years old, she had a lot of medical issues. People with Down syndrome, in general, do have a higher risk of certain medical conditions. After I gave birth to her, I read a lot about people with Down syndrome, so I was a little more prepared for these medical issues.
But when Kayleen was one and a half years old, that was our first ICU episode with her, where she turned blue and we had to rush her to the ICU. From then on, over the next few years, she went into the ICU three times in total. Each time she stayed there for about one month. She was in the ICU for about three weeks, and then in the general ward for another week or so before she was discharged. Through all this, she became very familiar with hospitals.
The reason I say she's very joyful and full of love is because, at a very young age, when she started talking more, whenever I brought her to the hospital for appointments, she would go up to elderly people or people in wheelchairs and start talking to them. She would ask them, "What happened?"
I remember very vividly there was this lady in a wheelchair. Kayleen walked up to her and started talking to her. I didn't even notice because I was so busy with the nurses and everything else I had to do—registering her and all that. Afterwards, the lady came up to me and said, "You have a very wonderful girl." She shared what Kayleen did. Kayleen had walked up to her, asked her what happened, and after hearing her story, she said, "I'll pray for you. I hope you'll get well quickly. I'll pray for you." She did this a few times in the hospital, and that's why I say she's really a very loving person.
She's also very loving towards children. I remember once she was in the classroom, and one of her friends had lost something. He was very worried and stayed back to look for it, while the whole class went for recess. Kayleen was the only one who stayed back. As a mother, I was more concerned that she had missed her recess and hadn't eaten. So I asked her, "Why did you choose to stay in the classroom with your friend?"
She said, "Because he lost something. I wanted to keep him company. I wanted to comfort him."
That made me feel very ashamed of myself because I wondered how it was possible that this little girl had so much love for everybody.
Shumin: Wow... I really love those stories.
When you talk about the hospital encounters, I would imagine that, from such a young age, having to go in and out of hospital could have made it quite a stressful environment for her.
But even in that kind of setting, she was still thinking of others, wanting to extend comfort and care to them. That's a really wonderful thing.
And skipping recess! Recess is such an important period for many children, so for her to stay back just to help a friend—I think that's such a wonderful picture of who Kayleen is.
Mary: Yeah. It also reminded me of one incident where a nurse had to take blood from her.
You know how young children would cry and be terrified of needles? She tolerated the whole process, and right after the nurse pulled out the needle, Kayleen said, "Thank you, nurse." She said, "Thank you, nurse."
The nurse was very surprised. She looked at me and said, "Mummy, nobody has ever thanked me for taking blood before."
Shumin: I'm sure those nurses are usually on the receiving end of cries, screams, and even kicks. So to receive a "thank you"—wow.
That's such a beautiful picture of the sweet, loving girl that she is. I also remember when I visited your place, the first thing she did was come and give me a hug, even though she had never met me before. I loved that moment, that was very sweet.
Mary: Yes. Thank you.
Shumin: Mary, if I were to bring you back to the earlier days of Kayleen's life—you mentioned her being in and out of hospital and in the ICU a few times at such a young age. Do you mind sharing a little bit more about what that season was like for you and your family?
Mary: Sure. That period was a very stressful one. I think no parent would ever want to experience something like that. Even till now, when my husband talks about it, he doesn't really want to look at the pictures that we took at that time because they remind him of the pain.
The first episode happened because she turned blue, like I mentioned.
It was fortunate that I picked it up because we were at church during worship. I was in the baby's room with her. She was a little bit sick at the time with a mild fever, so I kept us isolated from the other people. While I was cradling her, I noticed that her lips were turning a little purplish, and so were her fingertips. I quickly called the doctor, and the doctor asked me to rush her to the nearest hospital.
When we reached the hospital, we could see that her oxygen level had dropped to a very low percentage. The doctors had to give her oxygen, pin her down, and sedate her to make her drowsy.
At that time, I was still teaching. It happened on a Sunday, so I went back to work on Monday. During curriculum hours, I received a call from my husband. He said that I needed to go back to the hospital right after I finished teaching.
When I arrived, all the doctors looked very solemn. They wanted to have a meeting with my husband and me. They told us how serious the situation was—that if she couldn't survive that day, she would be gone. That was how bad it was.
Shumin: How old was she again?
Mary: She was only one and a half years old. She was such a small baby, lying on a big adult hospital bed with so many needles, pumps and machines hooked up to her. She had to be on a ventilator and so many different forms of support. It was really very stressful. During that stay, she even had to undergo CPR.
The second time she went into the ICU was one year later. That was also a very traumatic experience because she had to be put on ECMO.
ECMO is a form of life support that allows the heart and lungs to rest. When you think of life support, you immediately think of someone being in a very severe condition. That was the treatment given to her because it was the only chance left—the only thing the doctors could do to save her.
ECMO is a very invasive treatment, and there can be a lot of complications. I remember when we had to sign the consent form to consent for it, my heart was so heavy because she could end up paralysed, or unconscious for the rest of her life, with a very low quality of life. That was a very bad experience for us.
During that period, she also needed kidney dialysis for a short time.
She pulled through and was discharged.
Then, about a month later, she developed pneumonia again. In all three situations, she had pneumonia—a lung infection.
So the third round was about a month after her discharge. She got pneumonia again and had to be rushed back to the hospital. She was put on morphine, painkillers, and all those very high-dose drugs. I remember the doctors telling us that they tried to keep her as sedated as possible because whenever she was awake, all her vital signs would go haywire. But because she had only been discharged a month earlier, her body had already built up a tolerance to many of the medications. By the third ICU stay, she was tolerating the medication so well that the doctors had to keep increasing the dosage.
Even though she wasn't in as serious a condition as before, staying in the ICU was still very tiring for us. We had to keep going in and out of the hospital while also taking care of things at home.
That was what that season was like.
Shumin: Yeah, it sounds like such a heart-wrenching season for all of you to go through, and for poor little Kayleen and her tiny little body. It also sounds like, in those three ICU episodes, twice you were on the brink of losing her, even when she was so little.
Mary: Yes, that's right. I even had thoughts during those periods about what her funeral would be like. I actually planned it out in my head—what kind of casket I would choose for her, how the whole room would be decorated, who the people would be who would come.
I'm glad I didn't have to do it. It was just in my thoughts.
Shumin: Mary... I can't even imagine having to think about all those things and prepare yourself for that possibility. What helped you through that season?
Mary: What helped was really the love from the people around us. From the doctors, to the nurses, to our church friends, our family members, and even people online whom we'd never met before. That was a period when I blogged much more actively because I was using the online space as my diary, as my journal, to share a part of our life that people probably wouldn't otherwise see.
Starting with the doctors and nurses, every time I saw them lovingly attending to Kayleen, it really touched me.
Every day when we visited her, she would have a different hairstyle. The nurses would clean her up and tie different ponytails, different braids, different hairstyles. I thought that was very sweet.
I also heard that some of the doctors would pray for her recovery. Whenever she was more awake and not sedated, they would come in and talk to her.
We also had many friends who visited us, brought us food, reminded us to stay strong, and prayed for us. Even church members from other countries, who didn't know us personally, prayed for her. We only found out later when we travelled. They recognised us and said, "You're Kayleen's mum. We remember Kayleen. We prayed for her at church." They remembered Kayleen's name. They remembered she was the girl with Down syndrome who had been very ill and hospitalised.
We also had friends who brought our older ones out because we weren't able to spend much time at home with them. They took them to the zoo, brought them out for meals, and looked after them for us.
I really thank God for all these blessings that He gave us.
Without all this, I think it would have been very difficult to pull through—to survive that situation.
Shumin: Wow. So it really took a whole village. Thank God that He also brought all of you through that season. Now Kayleen is fifteen. That's incredible—that she pulled through all those hospitalisations and illnesses at such a young age, and today she's a sweet, loving fifteen-year-old girl.
I'm quite curious. For any parent, I can only imagine how heart-wrenching it is to have to face the possibility of losing your child at such a young age. After Kayleen pulled through that season, how would you say it changed you and your husband in the way you parented her? Did it change your expectations of her in any way?
Mary: For myself, being healthy became so important after that. Nothing else matters more than health. Without good health, she wouldn't be able to do anything else. That was something I paid much more attention to as a parent.
I also learned to cherish every day a lot more—in my own life as well. Life is really so fragile. Anything can happen at any moment, and we never know. I became more patient with myself too, and I learned to love myself more. I started taking better care of myself.
For my husband... if I were to speak for him, I think he probably became more prepared financially.
Shumin: For many parents of a child with Down syndrome, their perspectives or expectations for their child may already have changed. With this whole medical journey that your family went through with Kayleen, do you feel that it changed the way you looked at her in any way?
Mary: If you ask me whether it changed how I viewed Kayleen...I think I discovered that she's much more resilient than we ever thought she was. She had tubes inserted. She had to go through so many blood tests, ultrasound scans, surgeries...Every time, I felt she was very understanding.
Even though she was very young and probably didn't fully understand what was happening, whenever we explained to her, "The doctors need to check what's happening in your body. If you don't allow them to do that, we won't know how to help you," she understood. She would comply. She would cooperate.
Even for a difficult sleep study, I could see that she didn't like it, but she still went through it. The same with blood tests—really, with anything. I think she's really very resilient.
Shumin: Wow. I think our kids are much more resilient than we can ever imagine, especially when they're going through all these very scary procedures.
Mary: Yes, because knowing that they have Down syndrome, we would expect them to be the weaker one, the weaker member in the family. But they can be much stronger than us in many ways.
Shumin: Yeah. I also imagine there's a common assumption that, with Down syndrome, their comprehension and understanding may not really be there. But the fact that you could explain things to her, and she understood and tolerated the discomfort—I think that's really incredible.
Mary: It's amazing, right?
Shumin: You mentioned that this whole journey has brought your family closer together. Would you say that's one of the joys that emerged from such a difficult season?
Mary: Yeah, I would say that.
When Kayleen came back from the hospital, we had this rule that everyone had to wear face masks. She stayed in my bedroom because she was hooked up to two machines. One was the oxygen concentrator, and the other was the feeding pump. Those two machines had to run 24 hours a day because one was feeding her milk, while the other supplied oxygen since her lungs weren't in the best condition at the time.
We didn't want her to be exposed to any more germs, so we kept her in the room. Whenever anyone entered the room—even my helper at the time—we had to wear face masks and sanitise our hands.
My two older children obeyed. They understood how serious the situation was. They were about four and seven years old then. They followed all the instructions.
For about a year, maybe even two years, we didn't have any family outings together. It was always either Mummy or Daddy with Kayleen—never both. I think that made us appreciate our family a lot more. We appreciated each other's company much more. That was one of the joys that came out of that period.
Shumin: Because it was harder to spend time together as a whole family, any time that you did have together became even more precious.
Mary: Yes. That's right.
Of course, there were also a few other moments that brought us a lot of joy. I want to specially mention the Ronald McDonald House. We were at NUH, and the Ronald McDonald House is there as well. From the very first ICU stay, we were allowed to stay there because the situation was so volatile and anything could happen. We were given a room so that we could be with Kayleen whenever we needed to.
That's how I got to know the people at Ronald McDonald House. I really appreciated having that space because, after staying in the ICU for a few hours, it could be very tiring and also very depressing. I was thankful to have a room there where I could rest, reflect, and recharge—physically and mentally.
It was a really nice space for my husband and me. We took turns using the room because one of us had to be at home. We were also very well looked after by the staff there. I think that was another very unexpected blessing that we experienced during that whole situation.
Shumin: Yeah. It definitely sounds like there was so much compassion and care from different members of the hospital staff. Even though each act may have seemed like a small thing on its own, together they all added up and made that difficult season a little easier.
Mary: Yeah, that's right. When I think back on those years of hospital stays, I sometimes joke with friends that I never knew I would spend so much time in a hospital after having a child with Down syndrome. The hospital became like my second home. At that time, I knew all the shortcuts. I knew where to find the cheapest vending machine for my coffee. Everywhere I went in the hospital, I would bump into staff I’m familiar with.
Those are the things that put a smile on my face now when I look back on that difficult period.
Shumin: I'm glad they do. Now you're on the other side of that season, and Kayleen is thriving and growing well.
Earlier, you mentioned that you blogged much more actively during that period because it became a space for you to journal.
I imagine there are still many caregivers today who are in that season of going in and out of hospital, with the hospital becoming their second home.
What would you say to a parent who is still in that season?
Mary: This is such a difficult question to answer because I've gone through this season myself, and I know how difficult it is. I really can empathise with any parent who is still in this situation.
We don't know what the outcome of this season will be for each person.
So I wouldn't say things like, "Don't worry, your child will get better," or, "You'll get out of the hospital soon." I don't think those are very helpful. If I imagine myself in that situation now, I wouldn't want to hear that because it really has no meaning at that point.
But what I would like you to know is that, no matter what the outcome is after this difficult season is over, there is a God. God can feel the pain. God can see the pain that we go through. Whatever the outcome is, God has everything in His plan. Anything that you're feeling, anything that you're experiencing, just know that there is someone greater than us who is feeling it too, who is seeing it too, and who is going through it with you.
That thought encouraged me a lot during that difficult period. I was helpless. I had no strength to do this. I could only rely on the doctors, and I knew that they were also helpless. They could only do up to a certain limit, it is also beyond them at some point. The only hope that I had at the time was to look to God and tell Him, "Whatever it is, whatever the outcome is, I know that You are in control, and I will accept it." No matter how hard the outcome would be, I would accept it because I know that it is for the better for everyone.
Shumin: Thank you, Mary. I know that wasn't easy to share, and I'm really glad that this was what carried you through the darkest moments of that season. I hope it will also encourage whoever might be listening today and who may be in a similar situation right now.
Mary: Yes, I hope so.
Shumin: Mary, seeing how Kayleen has grown over all these years, what would you say is one of the greatest gifts that Kayleen has given to you?
Mary: Companionship.
I think she has given me so many gifts. She has given me the gift of patience. She has given me the gift of loving someone else and not just being so self-centered.
But at this point, I think she's the one who accompanies me the most. She keeps me company. I enjoy just sitting beside her and holding her little hands. Sometimes she'll hold my face in her hands, smile at me, and she keeps me company. She'll tell me, "I like to spend time with you."
We actually have this joke that started probably last year. Because of her low muscle tone as a child with Down syndrome, and her past medical history, she tends to do things quite slowly. I'm rather impatient, so whenever we're rushed for time, I always say, "Can you hurry up? Don't waste time."
So she started associating the word time with waste. So I would hear her say, "Mummy, I like to waste time with you." When she enjoys doing something with me, she'll smile and say, "Mummy, I like to waste time with you." The first time I heard it, I laughed so much. I'm still very tickled whenever I hear her say that.
Now she's learned that it shouldn't be "waste time" but "spend time." So now she'll tell me, "Mummy, I like to spend time with you."
Shumin: I can imagine her saying that in her sweet voice.
Mary: Yes. She keeps me company, and I really enjoy that. She also enjoys doing the things that I like to do. Sometimes we'll go for karaoke together, just Kayleen and me, and we'll sing for one or two hours. Sometimes we'll have karaoke in the car. We'll turn up the volume and sing very loudly together.
If I just want to chill somewhere, I'll ask her, "Can you go out with me? Let's go to a café." She'll be very obliging. She'll say, "Okay, I like to spend time with you," and she'll come with me.
Shumin: I feel like these are the little joyful moments that people don't often see—what it's really like to spend time with our loved ones with Down syndrome. That's a really sweet picture of companionship, just like you said.
Mary, as our time comes to an end, I just want to thank you for sharing part of your story with us today, especially recounting some of those really difficult seasons when Kayleen was little. I hope that whoever is listening today will take away something that brings a little comfort and encouragement to their hearts.
Mary: Thank you. I hope so.
Shumin: And to everyone who's been listening, thank you for being here. We'll see you in the next episode. Thank you.
Mary: Thank you.