There are a few good people that came to mind whenever I read this quote. Mummy Rae is one of them. Many of us in the special needs community here know her as the friendly face behind Project GIVE and the annual tea party she organizes for children and youths with severe special needs and chronic conditions. To many, the support Project GIVE has given to these families has been god-sent and the tea party has been synonymous with Rae and her team of volunteers.
But what is extraordinary about Rae is more than her work with Project GIVE. We want to bring her story to our readers, one that tells how she, as a mother to 12 year old Rachael (who has special needs and a rare congenital condition), has succeeded in channeling negative energy into positivity and in that process, not only helped her family cope, but has also started a movement and a supportive community that has helped other vulnerable families.
This is her story.
The initial years
“Rachael will be 12 years old this year. She has a rare chromosome disorder that does not belong to any syndrome, has no match in the world and which was not detected during pregnancy. She has a cleft palate, heart conditions, severe delay in development, and is unable to walk, talk or eat, but she is a super happy child with a charming smile.
It was difficult in the first year as I was still working full time and my hubby was based in the United States for a 6-month training. I moved back to my parents’ place with my new helper so that I could have support all the time. My family, friends, in-laws and colleagues were very supportive and rallied to help in whatever way they could.
After a year, I decided to stop work so that I can better care for Rachael as she was going in and out of hospital for treatments, operations, follow-up appointments and therapy. At her peak, she was seeing 11 doctors and 2 therapists. After 4 years when she was more stable, I started working part time. That helped me to ease back into full time work after 6 years.
Rachael’s well-being is top priority and my employer understood and supported that. My helper can manage and keeps us updated. We (daddy and I) take over care of Rachael the moment we reach home.”
On the decision to Work
“It is extremely difficult when Rachael is sick… not being able to stay with her. Thankfully, my helper is very capable in taking care of Rachael and both her daddy and I can take urgent leave should there be a need, as our employers all know we have a special child.
The loss of income in the 6 years was significant, and we downgraded from a 5-room flat to a 3-room flat to cope with costs. Going back to work definitely helped us to start saving for the future.
Having my own life, outside of just being a caregiver, also gave me room for personal development and growth.”
We asked Rae for the top 3 things that should be in place before deciding on reentering the workforce.
“It’s never an easy decision, especially given the high cost for medical interventions, supplies and therapies. My advice would be to consider these 3 things :
1. Reason for returning to work.
If the main objective is to get away to have some me-time, then a part-time, or simpler job would be ideal, like in admin or as a receptionist. If the reason is to increase income, then full time work would be more ideal.
2. Availability of a competent alternative caregiver
Is there a capable caregiver to take over in your absence? My helper takes instructions from us with regards to the routine caregiving for Rachael, eg. in administering daily medications, exercises. However, she is also mature and experienced enough to exercise good judgement in unexpected situations eg. If Rachael is having a fever, she will always call us first for advice before administering any non-routine medication.
3. Would your line of work take up too much of your time?
Some work require long hours / constant overtime and you may become too burnt out at work to continue caregiving at home. Would your employers be understanding enough to allow urgent leave / work from home? Would your absence jeopardise the operations? That would cause more stress if you have to care for your child and worry about work at the same time. For example in F&B, retail, shift work.”
We asked if she has ever been faulted by family or relatives for choosing work over full time caregiving.
“People around us have all been very supportive since Day 1. I’ve never heard any negative comment about decisions we make with regard to Rachael. After ensuring my helper is able to independently take care of Rachael, including fetching her to and from school, I was ready to return to the workforce. With the joys I experienced from Project GIVE, I wanted to work in a similar area, and for the non-profit sector (charities) only.”
Since 5 years ago, Rae has been working for a charity that supports at-risk students. She is involved in fundraising and community partnerships.
On Project Give
“Project GIVE was started in 2008 as I wanted to give back to the community. Throughout my first 4 years of caring for Rachael, we’ve met many kind souls and felt very blessed to have the support to help us through the hard times. Project GIVE’s first few projects were to distribute groceries and festive goodies to the elderly living in rental blocks opposite my place. Donations came from my secondary school friends who were extremely supportive, knowing that I will make good use of their donations.
I hope that we will have more people come forward to support initiatives by Project GIVE either with donations or volunteering. Project GIVE aims to be an avenue that offers people a chance to experience joy by giving, without having to worry about commitment. Regardless of the amount of donation, regardless of the number of times of volunteering, everyone can play a part in giving joy to the special needs community, a community that’s often unseen by the general public.”
On the annual tea party for KKH patients
“When the previous charity stopped organising the tea party, I was approached by Nurse Manager Sister Rachel from the Homecare Team to try organising a small one. I’ve attended the previous tea parties and can see the impact on our families and other families. It’s a very nice feeling when our special needs families get together as we don’t feel so alone. We all felt like one big family.
This year we held the sixth tea party in early May. We’ve increased the number of projects we do to include year-end home visits to those who could not attend the tea party, monthly birthday celebration, free hair cutting, and family portrait taking (which we’ve recently stopped as another more capable group is offering that). These are organised mainly by my dear friend Juliah. She is a fellow mummy with a special needs child I got to know in KKH when our children were warded beside each other in the neonatal intensive care unit (NICU). I couldn’t have continued with all these activities after going back to work, if not for Juliah.”
Words of wisdom for new parents
We asked Rae for some pointers on how to turn negative energy into something positive.
“Be grateful for everything, even when the going gets tough. It’s difficult, but if you try hard enough, you can find things to be grateful for. Once you start finding things to be grateful for, you will be constantly surrounded with more things to be grateful for.
Don’t be too hard on yourself to want to do everything. Sometimes work is more important (due to responsibilities), sometimes the child is more important. Ask for and accept help when you need to. But most importantly, you are most important. Me-time is important to recharge so that you can devote a ‘higher quality’ you to both.
A daily system can be established so the mothers do not have to make impromptu plans. Back-up plans due to emergencies, like when the child or caregiver falls sick should also be considered so that you don’t have to panic when it happens.”
Making time for Family
“We go out to places we enjoy – SEA aquarium, Gardens by the Bay (to see the light show), airport and travel once a year. Even if we are not doing anything special, like reading or watching TV, Rachael will be close by.
Top 3 wishes for families with special needs children in Singapore
“That employers will be more understanding to allow flexible working hours, working from home / hospital
That working mothers are recognised for their effort and not just for the number of hours spent at work.
That eventually special needs children can be allowed to follow their mothers to work. Some of our children only need to be fed and changed regularly, which can be easily attended to, as they are not mobile.”
It is not every day that we meet someone like Rae, but positivity yields further positivity and we hope her story has somehow encouraged you to strive on and give thanks in every situation.
If you would like to be a part of Project Give, you can learn more about how to support its cause here.