A Day in the Life of a Princess Warrior with Down Syndrome
Saturday, March 21, 2015
March 21 is World Down Syndrome Day.
Today, the Down Syndrome Association of Singapore is organising a carnival and a buddy walk along Orchard Road in support of all persons with Down Syndrome.
I wouldn't have known about this day - a day that is celebrated around the world to promote acceptance and awareness of individuals with Down Syndrome to the public, as well as celebrate the lives of those with Down Syndrome - if I hadn't had one of my own with Down Syndrome.
Although we can't be present to soak in today's fun and to join the buddy walk, donning our colourful socks, we will remember this day in our own way by sharing a day in the life of our princess warrior.
Every day is quite a routine for K as she hardly leaves the house, except to go for her medical check-up or therapies. It is not that she can't, but rather, we want to keep her away from the crowd to prevent her from catching a bug. And with her cumbersome oxygen concentrator and feeding pump that comes together with the tall IV pole, things can get a little tricky when she goes out. She is constantly hooked up to these two machines to help her lungs work more easily to get oxygen, and to prevent any swallowing dysfunction from oral feeding. These are her homecare treatment after three episodes of lung infections that almost took her life. That is also why she has stopped attending early intervention programs at Fei Yue EIPIC and her favourite Sunday School classes. You can read more about what happened here and here.
A day in the life of K starts with the morning. We would find her sitting up and playing happily on the bed once she wakes. And she does that signature pose of hers to tame her messy morning hair which never fails to make us smile (see video below).
After getting help to wash up and change out of her pyjamas, she points to the door and says "dooor dooor" to tell us that she wants to leave the bedroom. And when she is in the playful mood, she roars like a lion while crawling.
Watching Hi-5 or Baby Signing Time are her favourite morning activities and she will always get her spot on the sofa. She dances and moves just like the cast of Hi-5, and signs and sings along with Rachel in Baby Signing Time.
She displays high awareness of her surrounding and looks for the TV remote control to switch off the TV after the show ends. Sometimes she misses the green on-off button and lands in another channel, earning herself some bonus TV time until I realise.
She then gets her daily puffs of Flixotide - a medicine to help her lungs - twice a day. I sneak in some counting time with her, and we count slowly from 1 to 20. She follows and counts with me, and removes her spacer with a grin when we reach 20. Then she helps to keep the items in a bag.
The rest of the morning will be spent doing her physiotherapy, or occupational therapy either at the medical centre or by yours truly. All these come in the form of games and fun, but sometimes, she just says "nooooo" to the activity I suggest. She does have a mind of her own too.
K takes an afternoon nap on my bed. She is at this phase where she resists sleep and says "noooo" whenever I ask if she is tired. I love watching K when she sleeps, even if she looks unglamorous.
After the nap, K continues to enjoy the day with more constructive play either with her siblings or on her own. She loves playing with her soft toys and feeding them imaginary food. She calls her soft toys by their names in an endearing voice. There is "Beby", "Boo Boo", "Bear Bear", "A-bit" (Rabbit), "O-uuu" (Olaf), and "Poo" (Hippo).
She loves being surrounded by books too. Haha!
She loves our phones and iPads, and is very quick to grab them when no one is looking. Then she disables our phones with her numerous attempts to unlock the devices.
But most of all, K loves posing for the camera and making us laugh, because she knows she is adorable. Her chuckles are hilarious and it's without a doubt that you will laugh along with her. She showers us with her hugs and kisses. The PICU staff can definitely attest to that.
When dinner-time comes, she sits with us at the table. She doesn't really eat by mouth, as she has not been certified to eat safely by the therapists. But she joins in the conversation and pretends to feed herself after asking for her "boo" (bowl) and "poon" (spoon).
You asked what the future holds for her? Echoing Dr Forrest C. Shaklee's words,
"The best way to predict the future is to create it."That is why we, her guardian angels on earth, are here to guide her and support her each day to learn the life-skills she needs in the future.
Wherever, whenever.
That is why we, her guardian angels on earth, are writing this post to heighten the awareness of people with Down Syndrome in our society and create a better world for K to live in - a world where differently abled individuals are socially accepted and given equal rights in education, healthcare and job opportunities. There is a lot of potential in every individual with Down Syndrome, like a pearl waiting to be discovered and polished.
The intent of this post is not to gain pity or sympathy, but rather, to encourage you to celebrate your life just like how we are celebrating K's today. More importantly, to face your challenges with a strong will-power and positive attitude like K did. She wouldn't be able to reach where she is today if not for her will-power to survive. There will be many more challenges she has to face - her cognitive and speech development, her feeding etc - but if she faces all these positively like she has done before, I am confident she will triumph over them.
And of course, her Heavenly Father is always with her.
If you have been touched by K's story, may I request that you perform an act of kindness today (like writing a letter of appreciation to someone or send a meal to a friend) to spread a little love in the name of Down Syndrome. You can also take pictures of your kind act and post on your social media pages with the hashtag #WDSD15. Let's celebrate World Down Syndrome Day together!
*This post is part of the series "A Day in the Life" that is a celebration of World Down Syndrome Day. To read other posts on "A Day in the Life", or to contribute your own post, please visit
5 comments
K is such a dear. Love her fighting spirit!
ReplyDeleteMany people judge by appearance and fear what they don't understand. You've helped us to see that children with DS have personalities and emotions just like everyone else. Thanks for sharing this.
She is so precious, just as every single child is. What a gift, and what a joy.
ReplyDeleteSomeone once told me…. A child with DS has no hatred and that's the most beautiful thing which we can never achieve. Very glad to see she has come this far…… If you remember, i gave her a romper dress sometime back :)
ReplyDeletethank you for sharing more about her and opening our eyes to what it's like to be a DS child and have one and home. She really is a fighter!!
ReplyDeleteAi @ Sakura Haruka
Ai, Thank you for dropping by too!
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