[ 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
This week, we continue the testaments of Jean’s heartfelt experiences and beliefs, that with unconditional love, patience and perseverance, families are capable of conquering adversity and coming out on the other side much stronger, together.
On Cultivating Equality Amongst Her Children
“Sometimes, siblings can’t help but feel it is unfair that they have to bear the weight and pressure of growing up with a specially-abled sibling. It is most crucial to spend quality time with all children equally and take this time to educate and share about how we can all make our own lives and Kaye-Leigh’s life fuller and a more interesting one – by making it fun! We take turns doing activities that each of our child likes together, that way, everyone feels loved and that they belong.”
On Her Biggest Parenting Challenge
“Helping my children overcome instances where they were being ostracized by their friends or being called names (like ‘weird’) or their sister just because Kaye-Leigh is unique in her own ways.”
On Her Biggest Parenting Wins
“The understanding and the acceptance of differently abled people, not just those with PWS, in Kate-Lynn and Hanz has been exceptional. They can mingle with anyone in the circle of specially-abled people, and do not find them any different. I think this has been our biggest joy! It is their achievement, not ours!”
On Having Key Support Pillars
“Mine goes in this order: family, friends, parents and support group, therapists, medical practitioners and NGOs. Each pillar is equally important to help us get unstuck during challenging times.”
On Raising Extremely Grounded And Well-Behaved Children
“Unconditional love for one another! Acceptance of one another’s flaws and learning each other’s strengths, skills and talent helps. Teaching them the value of hard work equals rewards keeps them grounded. Helping around at home teaches them teamwork and co-operation. A load of disciplining too, helped in upholding positive values in them.”
On Self-Care And Time-Management
“It looks seamless on the surface but the truth is it is just as chaotic and busy every single day of the week!
“An important tip: keep a checklist in hand and keep checking. Don’t leave home with a checklist and forget about it, or throw it aside! Be organized. I plan the day from the time we wake up until the time we go to bed. And then I plan for tomorrow. I keep all hospital and therapy appointments in check. But never forget to set aside ‘me-time’. Every parent needs this! We must care for ourselves first before we can care for others!”
On Lifestyle Adjustments
“In the early infancy days, Kaye-Leigh required intensive therapies. Due to the long waiting list at government hospitals, we had to fork out extra for her therapies at private centers and that meant paying between RM100 and RM200 per session. As she grew older, the number of therapies reduced and we continued her sessions at the government hospital.
“In Kaye-Leigh’s case, a bulk of the expenses goes to her Growth Hormone (GH) Therapy. She requires a daily injection of GH to ensure a better quality of life as GH has important benefits that help in her growth, strengthening of muscles and improving her cognitive abilities, just to name a few. GH is not subsidized by the government as yet, and has been a long fighting journey between families of PWS and the Ministry of Health to make them if not free for all, partially subsidized. GH is very expensive and can prove to be an obstacle for the lower income families.
“However, citizens who have the OKU (Orang Kelainan Upaya) card are exempted from paying for medical expenses when seeking treatment or going for follow up treatment at our public hospitals. Sadly, we have tried to purchase insurance coverage for Kaye-Leigh but applications were never successful due to her medical diagnosis. We then decided to purchase insurance coverage with savings plans under our names in the hopes of keeping these savings for Kaye-Leigh in the future.”
On The Impact Of Her Journey On Personal Relationships
“It has brought us all closer. Both our families have become Kaye-Leigh’s biggest fans. We are so fortunate and ever so thankful for the love they have for all our children. They have so much hope, faith and believe in our children especially Kaye-Leigh and this has been our biggest drive in life. Francis and I have gotten closer over the years. Raising this beautiful family of ours has been the greatest achievement and joy of our lives.”
Jean’s Personal Takeaways From This Journey
“People say ‘everything happens for a reason’ but that’s not always true. Parents of specially-abled children do not find this notion acceptable. Can anyone tell me the reason why Kaye-Leigh was born with PWS? No. Did she ask to be born with it? No. Is there a reason as to why we have been made to be parents of a specially-abled child? No.
“These things do not happen ‘for a reason’ and it does not mean we have to subscribe to this notion of having to accept what is given because ‘everything happens for a reason’.
“I sat at the hospital bed days after Kaye-Leigh was born crying my eyes out for hours and repeatedly asked myself why was she born with this condition. Until today, I still can’t find the reason. But I can tell everyone that raising a child with PWS has brought out the worst and the best in all of us. The worst being the times we lose hope because of the unending stress and we feel like giving up. On the upside, it has brought out the best in all of us as we learn to love and care for a beautiful human who needs just a little push or a nudge for her to thrive.”
Words Of Wisdom To Parents On A Similar Path
“Pre-Covid19, I would tell parents not to keep their specially-abled children at home or hide them away from society. Bring them out to explore, to make friends and enjoy being themselves outside their homes.
“The key is to expose our specially-abled children just like how we would with our typical children. Of course, due to the current pandemic, it is not advisable to do so. However, we can still plan activities and games with our children and this provides the best stimulation for our specially-abled children and their siblings too.
“Talk to someone. Be it your family, your spouse, best friend or anyone close to you. Some days it may get too overwhelming and pouring out your hearts to someone relieves the burden you carry. Heal the soul and come back stronger!”
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 : firstname.lastname@example.org
FB : https://www.facebook.com/MalaysianPraderWilliSyndromeSociety/
IG : @malaysian_pws
Read A Mother’s Heartfelt Journey (Part 1)