A Mother’s Heartfelt Journey – Part 1

[ By Terry Saw ]

“The diagnosis came about when Kaye-Leigh was only two months old. At the time, everything was as tough as it could get. She was what the medical practitioners termed as a ‘floppy baby’. This broke our hearts – we’ve never heard of such a term, and to apply it to our newborn child tore us into pieces. – Lim Wee Jean”

Despite knowing Jean for over a decade now, this cheery supermom, devoted wife, daughter and good friend never ceases to be an inspiration. This week, we have the pleasure of learning how she and husband, Francis, navigate the trials and triumphs of parenthood, raising three healthy, happy and incredibly grounded children (two neurotypical and a child with Prader-Willi Syndrome (PWS)). She also reflects on some heartfelt experiences, all of which are crucial testaments that with unconditional love, patience and perseverance, families are capable of conquering adversity and coming out on the other side much stronger, together.

On Misconceptions Surrounding People With PWS

“Similar to how people may judge overweight individuals, assuming they’re irresponsible, lazy, greedy and only have food on his/ her minds, the misconception surrounding people with PWS is that they are unintelligent, slow and always hungry – they do not feel hungry all the time, and not throughout their lives.”

Her Experience Raising Neurotypical Children With A Child With PWS

“Initially (post-diagnosis), Francis and I felt lost and despaired, because it was totally unexpected. We felt the need to start educating our eldest daughter, Kate-Lynn, about her new sister Kaye-Leigh’s situation, although she was still very young.

“Our key to navigating this journey is ACCEPTANCE. With acceptance (parents and siblings), things will eventually fall into place. Also, never assume that neurotypical children do not understand what we tell them even at a very young age. Education helps them learn and accept the fact that siblings are forever. My children love their sister regardless because they see how we accept and love Kaye-Leigh for who she is.

“Another important value parents must have so that we do not hurt our children is PATIENCE. Over time, our experience of raising neurotypical children alongside a child with PWS is just like any other family. Kate-Lynn, Kaye-Leigh and my youngest son, Kye-Hanz are equally loved and growing up, are provided with the same opportunities and experiences.”

‘Action Plan’ Tips Or Advice For Parents Post-Diagnosis

“To be honest, we couldn’t come out with a plan at first. The diagnosis only came about when she was two months old.

“Our focus in that time (pre-diagnosis), was to strengthen her overall muscle tone, stimulate her oral muscles so that she could feed on her own (she was tube-fed for 4 months), to get her going on her growth, achieve a healthy weight and you know, just grow!

“Naturally, we started researching a lot on our own and equipping ourselves with knowledge post-diagnosis. However, not everything we read online made things better. Overloading of information also caused us a lot of stress and anxiety. Whenever we had to see the doctor with Kaye-Leigh, I would prepare a few pages of questions. I demanded answers from the doctors and was always anxious.

“Prof Thong, her then Geneticist, once had to stop me in my tracks, and told me to please stop, embrace your baby, take it one step at a time, and enjoy her. My ‘action plan’ for her completely changed since. I reminded myself, I know what PWS is and what comes with it. So that’s all there is to it. My focus since was just to get her stronger and ensure she thrives. As long as she is healthy, with no major problems with her vital organs and is a happy baby, that’s all that matters.

“Next, was to find support group for PWS, but unfortunately, there wasn’t any then. Fast forward, ten years later, a group of us parents formed a PWS support group and was officially registered in 2016.”

On Her Parenting Approach For Neurotypical VS Specially-Abled Child

“Kate-Lynn was not even two years old when Kaye-Leigh was born. Because Kaye-Leigh and I were at the hospital most of the time, she felt angry and wanted a lot of attention. We had to constantly explain why I had to leave her at home with her grandma. She had to grow up very fast and even developed her own natural instincts to help her little sister. Over time, she began to understand what PWS entails as we talk to her about it all the time.

“When my youngest son was born, Kaye-Leigh was four years old. She naturally assumed the role of a big sister, which helped with her progress. She had just learnt to walk on her own two months before Hanz came. While just a baby, Hanz followed us to all of her hospital appointments and therapies. He grew up in the environment and circumstances that shaped him to become who he is today – a protective and understanding brother to Kaye-Leigh who understands everything about PWS.

“In a nutshell, we just went along with what worked best for all of them and made sure we tell them enough and expose to them about everything to do with PWS.”

 

“To Be Continued (Part 2)”

A PWS Support Group was formed by a group of parents of PWS children in 2016, called the Prader-Willi Syndrome Association Malaysia or officially known as Persatuan Sindrom Prader-Willi Malaysia. For more information, join or reach out to the support group at:
Email : malaysiapws@gmail.com
FB : https://www.facebook.com/MalaysianPraderWilliSyndromeSociety/
IG : @malaysian_pws