The Trisomy 18 Tide Turns

10 years ago, parents I know whose infant had Trisomy 18 had to bring their case to a hospital ethics board to push for surgery for their child. 

Today, not only are children with congenital conditions covered by the country's insurance plan for large hospital bills, they announced this in the news: 

https://www.straitstimes.com/singapore/health/medishield-life-coverage-extended-to-three-new-areas

Excerpt:

"The other area now covered by MediShield Life is surgical operation for those suffering from two rare, life threatening conditions – Trisomy 18 (where the infant has an extra chromosome) and alobar holoprosencephaly (where the brain fails to divide properly into right and left hemispheres).

MOH said surgical interventions for these conditions were previously excluded from MediShield Life coverage as treatment was not effective, but more recent international studies have shown that surgical interventions can now improve the quality of life and survival of patients."

For certain, Vera's early g-tube surgery, fundoplication, cleft surgery, adenoid surgery, and biPAP suppport have tremendously improved her quality of life and given us 10 years of her unbridled joy and company.

The work of the warrior parents I know advocating over the years, working to get such studies published have not gone unnoticed. 

Dear Vera and Leona, the tide turned during your lifetime. It turned during your lifetime. 

A Little Arm Tapping

Day 21 today. When I came she was awake. I sang her a familiar song, and towards the end, she started tapping her good arm in response, then drifted back to sleep. We learn to look out for these brief precious signs from our little non-verbal girl.

Day 12 At The Hospital

We're on Day 12 at the hospital.

Medically fragile kids like Vera can't cough and spit out their secretions as well as us and have to be suctioned almost every 3 hourly to have it removed. The session can take a lot out of them, making them breathless. They then need higher oxygen and ventilator support to help them recover from each session.

She seems to be improving. But as typical of such kids, progress is always slow and we just have to follow her pace.

That Empty Feeling

One of the things that sticks out like a sore thumb when Vera is in hospital is her home bed.

It just feels weird not to see her in it, happily keeping herself occupied with a musical toy, as we walk past.

The room has been given a clean sweep, de-germed, all ready for her return.

Praying that her recovery goes smoothly and she doesn't catch another bug before she heals from this one.

Back At Base Camp

While 'Love Is Not Rare' was about to air for the first time yesterday, we were scurrying to pack Vera's hospital bag.

I would have sat with Vera next to the radio to savour the moment of hearing it play, but I guess life happened in opposites yet again.

I called a cab and caught the song on air just as it arrived.

We're back at our second home and 'base camp' - the Ronald McDonald Family Room.

Vera is in the good care of a medical team we trust, and getting the support she needs to get better. It's always a relief to have capable hands take over the medical care.

It was a nice surprise, to browse through the 2016 Ronald McDonald House Charities Annual Report to see an article I'd contributed back then - from Vera's blog (The House That Supports Us). Vera was much smaller just 2 years back.

The common cold that we get once or twice a year sends medically fragile kids like Vera straight to hospital for medical support. We bounce back from a viral infection in 5-7 days. These kids take 2-4 weeks.

Thank you all for your well-wishes for Vera's recovery. It will just well, not be as speedy.

Vera Catches The Bug

I've been down with a throat infection and a bad cough the past week (through the launch of the song). I passed it to Ian whose been down these 2 days. Today, it's no surprise Vera has joined us.

There will be no going to LOVE 97.2FM to sing live to her now. They will air a pre-recorded interview instead at 3pm Wednesday 5 September. They will also play LOVE IS NOT RARE for the first time on air. Wish we could have been there but it was not to be. With medically fragile children like Vera, surprises like this and sudden change of plans are only to be expected. 

We're on 3 hourly suctioning + nebulizer n percussion now. Praying she rides through this bout at home. 

Love Is Not Rare Song Out Now

Photo by Isabelle Lim

Dear family, friends and Vera’s fans from near and far, 

Thank you for your overwhelming support for the launch of the ‘Love Is Not Rare’ song.

When people full of heart come together, miracles like this can happen. The song was arranged and produced by Patrick Chng, and the stories of the families sensitively brought to screen by director Shane Mok of BackButtonMedia and his team. Isabelle Lim lent her wonderful eye for seeing the best moments through her lens. Of course, not forgetting the man for stands for 'Love Is Not Rare', Kenneth Mah, founder of Rare Disorders Society Singapore.

To support children with rare disorders, please visit rdss.org.sg

If you would like to support the song, please download it at yinmay.com or at yinmay.bandcamp.com 

80% of the net proceeds will be donated to the Rare Disorders Society (Singapore).

Thanks for sharing the love : )

Launching An Original Song Soon

During the music video shoot for Love Is Not Rare song. Photo by Isabelle Lim

When you reach mid-life and have not yet done that thing that is your passion, that thing that is such a big part of who you are from the start, you can resort to unexpected measures.

Like quitting a really good job with great bosses, great colleagues at a good company. 

Double hospitalisations of the kids last year triggered the move. Against all logic, I felt I needed to take a career break. I'd been juggling work and Vera's hospitalisations, keeping both balls in the air for the last 6 years. 

I knew what I was going to do. Get my songs out. Starting with the ones inspired by Vera's journey. But I wanted to release them in a meaningful way. Using them to raise awareness for some cause. Because a song is bigger than its songwriter.

I decided to start with Love Is Not Rare. I had been inspired by Vera and some parents and children I'd got to know through Rare Disorders Society Singapore. 'Love Is Not Rare' is their tagline. I was touched by what they were doing for their medically fragile child at home - far more intensive care than what I had to perform for Vera.

Great team on the job - checking out the shots with Shane and Brandon of Back Button Media. Photo by Isabelle Lim

Through Kenneth, the Executive Director of the society, I got to know Patrick Chng, who heartily agreed to help arrange and produce the song. Then through a parent in RDSS, we got to know a video production company we wanted to work with. And dear cousin Isabelle offered to help me with all the photography needed. Even not being able to hear the singing and music cues does not stop her from shooting a music video. 

Cousin Isabelle doing what she does best - capturing the best moments.

Aunt Jacqueline with her infectious cheer trying to get me to relax...I'm too tense!

And so the heavens heard and things fell into place. 

This song isn't just about myself and Vera. It's about the journey that all caregivers of medically fragile children live through, on a daily basis. It is about a love that is filled with simple joys, but also hurdles, heartache and pain. 

8 months this project has taken to fruition. I'm so thankful for all the people who made it possible, and the support from Ian that allows me to realise this passion project while he holds up the fort. And to my parents who step in to help out whenever I ask. 

Am looking forward to sharing the music video soon. 

I Have To Be Her Voice

It's not funny to wake up when half your life is gone, and realise what you really need to be doing.

And what I want to do, is share the songs Vera's life has inspired me to write. They are borne from 10 years of being on this journey with her and all the people who have come into our lives because of her.

While it is very heartening to see lots of effort being made to celebrate the sporting and artistic abilities of persons with disabilities, what about the severely disabled? Those like Vera who can't talk, can't understand what we're saying, and really can't do very much besides lie there?

There is purpose to their life too.

They are here to let us stare weakness and imperfection in the face and understand them intimately. To give us a chance to see that true beauty lies within imperfection, that true strength comes from weakness.

All these years, Vera has helped me to heal, through the painful yet cathartic process of songwriting.

Two years ago, she pulled back from the brink. She wasn't done yet. She's inspired 2 more songs since then.

I have to be her voice.

Let's Take Part Anyway

I never dream that I'd be able to take Vera out on a boat. So when I checked out the Inclusive Sports Festival and realised that they were having a sailing tryout in an indoor swimming pool, I jumped at the chance.

It'll be stable enough, safe enough for her. No choppy seas or strong winds.

The festival was to expose more abled special needs individuals to different competitive sports and hopefully get them interested to take them on. It was also a good chance for the public to experience various disability sports. But best of all, it gave Vera the once in a lifetime chance to safely 'sail' in a boat.

It wasn't easy to haul her out of the boat, and she got a little scared at the end, but I'm glad we did it.

Over at the land sports, Vera tried throwing the ball. Yes she is unable to aim and see where the ball is even going. But she got a kick out of throwing the ball with my help. I know what some of the volunteers were thinking 'This girl can't even aim or look at where the ball lands, yet her mother is still letting her throw." They smiled tentatively at me.

When you have a child like Vera, you "Do It Anyway". When you have a child like Vera, it isn't about the aim of the game, but about getting her to try. When you have a child like Vera, it's all about the journey, not the destination.

It's a mentality I learnt from many good special needs teachers, who continue to communicate with and teach students with very low ability and response. They have my utmost respect.

Come Vera, let's game on!

The Trisomy 18 Connection

Once in a while I'll get an email from a new Trisomy 18 parent wanting to connect.

They have found us through Vera's blog or through someone who knows about Vera's blog.

I'm heartened to know that this blog continues to connect us where it would be near impossible to otherwise. Hospitals are not allowed to divulge information about cases to other parents. Although I wish they would if they have expressed that they are okay with sharing and supporting other parents.

As a new Trisomy 18 parent, the first thought we had when Vera was born was: "Are there others in my situation? Parents I can learn from? Get an idea of what such a child would be like? I need an experience map!"

To Annabelle's mom, Zane's mom, Mallory Rose's mom and many others, we couldn't have done it without your guidance, back when there wasn't facebook groups.

And so I keep up the blog, hoping to pay it forward.

If you know a family with a Trisomy 18 baby, please share this blog with them.

Quattro Air for Her

Quattro Air for Her - Resmed adult full face mask

Vera needs a full face mask for her Obstructive Sleep Apnea - one that covers both her nose and mouth.

The problem is, hardly any companies manufacturer them for kids. So over the years, we have been buying adult NASAL masks to cover her nose and mouth. We've gone from nasal M to L to XL. XL being the biggest nasal mask size out there, it was a matter of time that we would have to transition Vera to adult full face masks, starting with the XS or S size.

I bought so many - but they were just too big. She was what we call "in between".

Finally, today, I brought out one of 3 full face masks I'd purchased 2 years ago, waiting for the day she can transition to them.

And the Resmed Quattro Air for Her fit perfectly! It's the XS size, thank goodness there's an XS size. Which means my years of online mask hunting, buying masks without knowing if they'll fit her - are over. From now on, it's just a matter of getting the same mask, just a size up, with just a call away from the local vendor.

I can breathe easy now.

Rock of the Family

Quietly she listens and stares. At the people talking near her.

So intently, that you would think she has really good sight and hearing.

Truth is, Vera only has moderate sight in one eye, and moderate hearing in one ear.

But time and again, she has shown us, that she sees and hears with her heart. She senses people, at "heart" level.

And at night when she pulls us in to hug us repeatedly with her one good arm, I know without a doubt that she is loving us back.

Vera's wordless reservoir of love is sustenance for our hearts. She is the emotional rock of our family.

10 Years of Life With Vera

Photo credit: Bridgette See, taken on New Year's Eve

Vera is turning ten this February.

Who would've thought she'd make it to ten? In Trisomy 18 terms, where life expectancy of survivors is known to be the late teens, it's a miracle she's come this far. 

We've been on this caregiving road with her for ten years. 

Here's what I've learnt on this journey.

You can get comfortable living with uncertainty.

We learnt she had Trisomy 18 twelve days after her birth. She was still in the ICU. Our immediate family was called for an urgent gathering at the hospital where they broke the news - basically, that Vera had many many medical problems. And that life was going to be Very Very Uncertain. There wasn't going to be a 'How To' manual moving forward. The mothering bible 'What to Expect In The First Year' wasn't going to be much help. From that day, I learnt that life can change in a day. I learnt that Uncertainty was going to be a big part of our lives moving forward. Uncertainty was a new member of our family. Over the years, we've become rather well acquainted and today, I can sit next to Uncertainty and not be afraid to look her in the eye. 

The real 'mother' of Vera is her father. 

We kept to ourselves most of that first year. They said 9 out of 10 wouldn't make it past their first birthday, so we wanted to give her all our time. The first year really showed me what my husband Ian is made of. He's not just mentally stronger, but more able to manage the routine tasks of tube-feeding and burping a colicky baby for hours while battling tiredness. Up till today, this daddy still bathes her and changes her diaper. He is Vera's hero.

It's humbling to receive the love of the community.  

Having a special needs child exposed us to a world of care and support beyond our immediate family. Doctors, nurses, therapists, teachers, fellow special needs mommies, milk mommies, the volunteers at the Ronald McDonald House. They all treated Vera no different, in fact, more special. They spoke to Vera as if she knew what they were saying. I realised that to survive this journey, I needed the support of the wider community. They opened my eyes to love beyond that for your own blood. It was humbling to receive all the external care and support. 

She ain't a burden; she's a blessing. 

Vera's is a love without language, without sound, without words. But her love is pure, unbridled and whole-hearted. Even if I do not see her sometimes for long stretches, she does not, or does not know how to mind. She's always ready with a hug and a smile when I finally appear. It is a blessing to receive her abundant, unconditional love.

You can lose your faculties just like that. 

2016 exposed us to the painful experience of seeing Vera lose some mobility functions. The near-death episode took with it her laughter, the movement of her right hand, her ability to penguin scoot across the room. We probably won't see her clapping her hands again. Or hear her laugh heartily again. But because we cherished her every sound and movement when she possessed them, we are at peace with the loss. 

We cannot possibly do this on our own. 

As Ian and I grow older, we are starting to feel the strain of 24kg Vera on our backs and shoulders. It is increasingly clear that this caregiving, weight-lifting journey is not sustainable without external help. Especially when we fall sick, sometimes at the same time as the kids. We have been very lucky all of Vera's caregivers have loved her whole-heartedly and taken very good care of her. It is no joke looking after a child who cannot communicate her needs, and remains pretty much a baby throughout her life, relying on you for everything. Vera is where she is today thanks to the caregivers who have looked after her for the last 10 years, nursing her through every viral episode, accompanying her on every hospital stay. 

As Vera turns ten this month, I look back and realise how much she has changed my life. This Trisomy 18 child. 

Luxury of Time

Luxury is seeing this girl wake up in the morning and getting her first hug.