Growth Plateaus

Miss Vera, who has been growing steadily over the years, surprised us in June this year with a slight drop in her weight. So it's a sign that we're not feeding enough as she's 15 now and nutritional needs have increased. We've gained back the weight loss to neutral and hope to continue giving her a boost. Check in again at her 16th birthday for any growth progress :) 

When Do I Let Go - New Song Out Now

After the launch of Love Is Not Rare in 2018, I wanted to carry on sharing the many songs Vera has inspired.

'When Do I Let Go' is a song I wrote after our difficult episode with Vera in 2016. We stayed at the Ronald McDonald House then. At the time, it was a dilemma deciding what we should do as parents. Do we hang on? Do we let go? Do we pray or say goodbye? 

A blessed opportunity emerged earlier this year to collaborate with Ronald McDonald House Charities Singapore who is celebrating their 30th year. They heard the song and were keen on a music video about parents' experience with their sick children in hospital.

After six months in the oven, here it is - 'When Do I Let Go' Music Video

I cannot thank Patrick Chng enough for arranging and producing the song, without which this MV would not have been possible. Also to the good folks of Back Button Media once again, for the meticulous planning and sensitive storytelling.

Ever thankful to RMHC Singapore for this opportunity to collaborate and bring the experience of real parent beneficiaries to life through song. The support from Vera's hospital was also amazing. So much work behind the scenes in planning it all.

Do visit RMHC Singapore to learn more about their meaningful work, dedicated volunteers or make a donation.

Alone we can be good, but together we can achieve so much more.

XXX
Yin May

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.

This Try-somy Girl

This Try-somy girl tries damn hard. Slowly she has regained strength, little by little over the last year. She's back doing her crunches, and back on her tummy. 

She used to be able to "penguin scoot" across the floor, but we're not expecting that to happen again. We're just happy she's improved and in her awareness as well.

Double Whammy

June was supposed to be the school holidays. It was no holiday for us.

We spent the last 3 weeks of June with Vera in hospital. She has a viral infection - RSV. Thankfully, it turned out to be not as serious as the one last year. 

Then, before she could be discharged, D got sick. After 7 straight days of high fever, we brought him to the hospital. It turned out to be Mycoplasma Pneumonia. 

From doing our 'hospital rounds' at one hospital, to 'hospital rounds' at another. In total, Vera was sick for 5 weeks and Daen for 2 weeks. 

The after math: Ian and I are burned out. (Both of us once drove away from our intended destination, our minds were not on the road.)

I cannot stay overnight at the hospital - I can't think straight and work with the doctors in the day. 

I do the day shifts, and our helper and Ian do the nights. 

Ian did all the nights with D, saved for the last one (me). It is no joke trying to sleep in a room full of infants crying through the night. 

No wonder patients and caregivers are grumpy! Lack of sleep is a killer. 

For the first time, we did a double discharge - on consecutive days. 

We're all back home now. 

Pray no more hospital stays for 2017. 

Gaining Strength

Vera is improving, slowly but surely. Mummy bought a bench, so we can sit with and support her while she practises her sitting. 

Sorry for the lack of posts - was dealing with a 3 month long on off illness, settling into a new job, and had to manage a change of caregiver for Vera.

Things have started to settle down. We are hopeful that the second half of the year will be more peaceful.

Thanks for the support, our dear readers!

The High Cost of Special Needs Equipment Our Kids Need

As a special needs parent, one major bugbear we have is the cost of special needs equipment. They are extremely expensive.

Why? 

Answer: They are made in the US. And in the US, special needs equipment are covered by government insurance. So no direct out of pocket from consumers, hence no direct incentive for manufacturers to lower their cost. 

And our kids need them. Bath chairs, remote control chairs to give a sense of independence and freedom, gait trainers to teach children to walk, and of course pushable wheelchairs. 

Bath chair for safe bathing

Remote control wheelchair

Gait Trainers that help kids learn to walk

The good folks at Paediatric Seating Solutions Sam and Jimmy (above) help kids find suitable equipment.

For many special needs parents like myself, these are the "luxury goods" we own, in place of luxury bags or shoes.

Here are Vera's necessary items - more expensive than any piece of furniture in our home. 

Rifton Activity Chair approx $5000

Rifton Feeding cum Activity Chair that allows tilting forward and backward with side supports for her Scoliosis and for easy moving around the house. Without this chair she would basically lie in bed the whole day or on the floor.

Zippie TS Wheelchair

Zippie TS Wheelchair for going out to school 5 days a week. Also allows tilting and with support for Scoliosis. High enough so we don't have to bend so low (backache) to lift Vera out. This was a gift from Make-A-Wish which we really appreciated.

Vera Can Go Places Now

Make-A-Wish threw a balloon-filled Wish Party for Vera and our friends and family.

On 7 January this year, Vera got a new wheelchair from Make-A-Wish.

They grant the wishes of children who are chronically sick.

Each child can have one wish granted. Since Vera cannot tell us what she wishes for, we as her parents get to decide for her.

It was a simple decision.

As an immobile child, the only way Vera can see the world is for someone to push her around or sit in a vehicle.

Vera had outgrown the stroller she had been using since she was 3 years old. She was way overdue for a new one. But because of her Scoliosis - her spine is an S-curve, she needed a wheelchair that could provide customised support so her Scoliosis would not worsen. With such a wheelchair, she could sit for hours in school well-supported.

On the day of the reveal, wish granters surprised us with a chair decked up in a rainbow of colours.

The theme: nursery rhymes "The Wheels On the Bus", "Baa Baa Black Sheep" "Humpty Dumpty". Humpty's expression sums it up "Why are you sleeping at your own party Vera???"

Her day-night reversal meant that she wasn't awake throughout the party.

It was a shame. There were fun and games, a cake, and pretty decor. The last time we had something like this for Vera was at her 5th birthday.

It was great to have our family and friends with us at the party to share the joyful moment. The last we had gathered was under sombre circumstances at the hospital last April.

Thank you Sam, Jimmy from Paediatric Seating Solutions and Auntie L for the hard work behind the scenes getting the wheelchair fitted just right for her. Thank you Make-A-Wish for the gift. Vera can go places now.

TODAY: Caring for a special child

Wrote an article that appeared in TODAY, today. Sharing the journey we've been on with Vera.

Two Is Better Than One

We started 2016 with zero need to suction Vera.

We end 2016 with daily suctioning, 2-3 times a day.

This is our new normal, our new 'well' situation.

Weakened lungs and weaker swallowing ability mean more secretions.

Daddy holds her because she struggles, while mummy suctions. If I had to do it alone, I would have to use my feet as Daddy's hands. Possible, but not easy.

Two is better than one.

Respite Admission

Flu bug. Got Daen. Got Vera. Got me. 

That was 2 weeks ago. We were back to 3 hourly suctioning. Even as I was down, we held out at home for as long as we could. 

We were struggling to keep her oxygen requirements above 90%. We had no nebuliser, no oxygen concentrator, no oximeter. 

We have been resistant to turning Vera's room into a hospital set up, but it seemed inevitable. 

Fellow mummy Samantha was a fairy godmother. In a flash, we borrowed a nebuliser and an oximeter from her. 

I lasted 8 days. On Day 9, my body refused to move and I just lay in bed. 

It was time for respite admission. Luckily there was a bed. 

I do not see it as a weakness that I have failed to take care of Vera at home throughout. I do not feel guilty. 

I think no mum dealing with a child with high medical support needs should feel that they should shoulder all the burden of their sick child. Especially if they still had to work.

I'm glad we're a phone call away from our NUH Homecare nurse, who arranged everything. I could get proper rest (finally!) while knowing she's in good hands. 

I knew that a flu cycle is at least 14 days for Vera and that she was already on the mend when she was admitted. 

We should be bringing her home soon. 

Eye See You

Miss Squinty-small-eyes has new big eyes. All thanks to her new pair of glasses. 

They magnify her eyes big time, because the degree is very high.

After 3 rounds of detailed eye tests, doctors discovered that Vera has severe long-sightedness. Without "lao hua yan" glasses, she's as good as blind. 

No wonder she kept poking her eye - to stimulate her own vision. No wonder she wasn't tracking us. At 700 degrees, everything is a blur.

The eye tests also confirmed, for the first time in 8 years, that the physical connection between her both eyes and brain are normal.

It doesn't not mean however than with these glasses she can suddenly see perfectly. 

Doctors believe there was some brain damage during the serious Pneumonia earlier this year. This could have affected the processing of visual input. 

For now, we can see that she's getting used to "seeing" again, with new eyes. 

Purple Love

Mothers of children with rare conditions coming together as one to sing "Let Love Speak" -
an original song composed by Sally Kwek (on-stage second from left) for inclusion awareness.

Once a year, Singapore comes together at the Purple Parade - to stand side by side in esprit de corp with those with Special Needs. 

I've always been hesitant to bring Vera to crowded places. My paranoia is warranted. One bug caught and to the hospital she goes. And after the scare earlier this year... I've realised over the years that it's just not worth taking the risk. 

Today, I struggled to make a decision, but finally brought her. I joined a group of RDSS mummies and their children who also have rare conditions on stage. Despite some of their children being on breathing machines, needing on-the-spot suctioning, or being prone to sensory over-stimulation, they bravely brought them to the event. 

We all wanted the same thing: To show the world that our children, no matter how weak they may be, how unresponsive they may seem, how dependent they need to be, how different they look from everyone else - their lives matter. We wanted to stand up and be counted with them, and for them.

Together as one, we sang Let Love Speak - an original song by Sally Kwek. Its powerful message: That even though "we may look different", even though "we may not speak the same" as those who are non-verbal or those who have speech difficulties, the best language we CAN use to communicate with them - is LOVE.

After the performance, Vera started to stiffen and her arms started to shiver although it wasn't cold. The booming music, bright lights and loud cheers must have been overwhelming for her. We quickly brought her to somewhere quieter and she knocked out, then woke and kept choking on her increasing secretions. Fingers crossed nothing develops. 

Along the difficult points in my journey with Vera, I've always looked to fellow mums to inspire me to go on. These mothers fight tooth and nail for their special one, they want the world and its unforgiving attitudes to change for their child, they go all out to explore new terrain, to forge new paths for their differently-abled child where there are none. Sally is one such mom.

Thank you for giving us the opportunity to let our children's "voices" be heard. Because many of our children can't speak, we as their parents have to be their voice. We have to take every opportunity to calmly address a stranger's ignorant comment, to be the bridge between our kids and abled ones, to help them realise that EVERYONE is different, just in more or less obvious ways.

Every one of us, dad, mom, sibling of a special child, need to BE THEIR VOICE and believe that our own small encounters can effect little ripples of change that can eventually make a significant difference.

Coming To The Surface

I am rising from my deep dive.

I can feel it.

I've been reading to help myself.

Author Jody Day says in her book "Living the Life Unexpected":

"Being depressed is not necessarily always a problem; it has a valuable part to play in giving us the rest and space we need to reconstruct our identity after losing someone or something very dear to us."

"We reject those who try to cheer us up...we are in a deeper place than that, and we know that's where we need to be."

"The depression that is a part of grief will pass when it has given you the space, rest and introspection you need to move forward with your healing journey."

"Once we begin our grief work, things can begin to shift quite quickly, and you can start moving forward with life again."

"Acceptance is about coming to terms with our destiny and making peace with it. It doesn't mean we like it, or that we think it's fair. It just is what it is."

"Acceptance does not mean that we go quietly. But what it does mean is that the energy that was locked up in our grief becomes available to us again, to dedicate towards a new future."

I took a picture with Vera today. I haven't done so in ages. It's a good sign.

As long as Vera doesn't give up hope, I can't.

Stemming The Downward Spiral

The last 2 months have been rough. Not for Vera, but for me.

It became increasingly clear that she had lost vision and it would now be her new normal.

I was heartbroken.

Since Day One, I'd mentally prepare myself for all kinds of deterioration - lungs, limbs, but never that she would lose the little sight she had left in one eye. She no longer focuses on faces like she did before. We are quite sure she can't see us now, or we're probably blurry shapes.

I was falling apart. I did not feel like doing anything. I'd burst into tears, sitting in the park. Sorry not for myself, but Sorry that this determined little girl would have to start all over. With less faculties.

I reached a point where I would zone out to cope. I stopped caring about Vera, focusing on Daen instead. The little buzzy was what kept me going. I knew I had to stop myself from spirally downwards further.

Ian, dependable as always, stepped in to love and care for Vera when I zoned out.

Then Vera started to improve in her strength. We are seeing her stroke-like hand respond slightly to our daily physiotherapy. She even started to attempt to do her signature crunches!

But the biggest glimmer of hope, was that she still wanted to pull us in for a hug - this time with just one movable arm.

And she actually seems to be in good spirits, despite all that has happened to her body.

How many of us can do the same? As it turns out, her condition, her "unknowing", is her greatest blessing.

How can I give up when Vera is so determined to go on?

And at this bottom of the U curve, her teachers, therapists, doctors and nurses, and friends are there for us. Coming to visit, especially the super- caring Dr W and Nurse E from Nuh Homecare team. I am so grateful.

Like our friend Kenneth says, she's "reset to zero", something our medically fragile kids are prone to.

I've also had to "reset to zero". Perhaps that's what we all need some time in our lives to take stock, to recharge and reflect.

I'm taking it by the day now.

Vera will get better. And so will I.

Smiling A Little

Amidst her drowsy state most of the day, we're beginning to see her smile return like brief sun rays through the clouds.

I'm just so glad to see her smile again.

What Am I?

Someone recently asked me, "How I find the strength to go on? How faith helps me, was I an Atheist."

I'd better find out, I thought.

I googled Atheist: someone who does not believe in the presence of a God. Nope.

Free thinker seemed too broad and unfocused and Humanist seemed too focused on humans.

Then I found this other term; Agnostic (why does it sound like "caustic")

Agnostic: a person who holds the view that any ultimate reality (as God) is unknown and probably unknowable; broadly :  one who is not committed to believing in either the existence or the nonexistence of God or a god

I guess, at least for me, that comes closest to my belief.

Since I do not follow any religion, where do I get the strength to go on for Vera?

I don't know, but these words from philosopher Krishnamurti, though rather deep, ring a bell for me.

J. Krishnamurti, “A New Consciousness” from This Light in Oneself—True Meditation

“One has to be a light to oneself; this light is the law. There is no other law. All the other laws are made by thought and so are fragmentary and contradictory. To be a light to oneself is not to follow the light of another, however reasonable, logical, historical, and however convincing.

You cannot be a light to yourself if you are in the dark shadows of authority, of dogma, of conclusion. Morality is not put together by thought; it is not the outcome of environmental pressure, it is not of yesterday, of tradition.

Freedom is to be a light to oneself; then it not an abstraction, a thing conjured up by thought. Actual freedom is freedom from dependency, attachment, from the craving for experience. Freedom from the very structure of thought is to be a light to oneself. In this light, all action takes place and thus it is never contradictory. Contradiction exists only when the light is separate from the action.

The “ideal,” the “principle,” is the barren movement of thought, and it cannot coexist with this light; one denies the other. Where the observer is, this light, this love, is not. The structure of the observer is put together by thought, which is never new, never free. There is no “how,” no system, no practice. There is only the seeing that is the doing. You have to see, not through the eyes of another. This light, this law, is neither yours nor that of another. There is only light. This is love."

Leona is Four

In the world of Trisomy 18, parents lose their babies in utero, give birth to them stillborn, or lose them days or weeks after birth.

In Trisomy 18 terms, a child who makes it past her first year is a survivor.

Leona has just turned four.

To see that she made it past the initial years and is now thriving (you should see her lotus-root limbs), it's an awesome feeling.

To experience her grabbing fingers, joyful grins and pure gaze is a privilege.

The spirit is strong with this one.

Thrive on, little Lioness!

Wading In The Well

Wading in the well.

That's what I've been doing the last 2 months.

It's quiet, dark and damp.

I wade in endless circles, looking up at the sun that's so near yet so far.

We can't get Vera out of her stuporous state.

The medication for her seizures, they knock her out. She wants to wake, but can't.

Our worst fear is that Vera can't seem to focus. She doesn't look at us now, even up close. We suspect her sight has been affected.

When we call her, she no longer turns towards us. (Is her hearing affected as well?)

Yet, the girl shows signs of life. Her left hand moves with a vengeance - swiping, scratching, it's very much alive. Fighting like a one-arm bandit.

Vera, fight on. We gotta get out of this well.

Nightmares

I had a nightmare about Vera. I was on a motorbike. I rounded a corner and saw her in her pink top and grey shorts faced down on top of another child on the tarmac.

An accident.

Instead of going to her, I swerved away.

Suctioning Seriously Sucks

Warning: This is a ranting post.

I'd never thought I'd rant in a post, but here it is.

Suctioning your own kid sucks.

Sticking a tube down your kid's throat, agitating her to gag and cough sucks. Best part, she resists with all her might and we can't get the secretions out.

Seeing tears from her eyes each session, with no crying sounds, and you're the one causing it. My tears? They drip from my heart.

I'd not expected to suction her for so long after discharge. Discharge right? Well already that's why discharge right?

Wrong.

Full recovery of lungs, will take months. Secretions will therefore take months to clear. I'd been eager to discharge her. In all her past admissions, the need for suctioning at home stopped after a week back home. Things go back to normal.

It's a nightmare this time. It's been 5 weeks I've done this.

For Vera, it's been suctioning every day since mid-March, that's 4 months. For a girl who's never needed suctioning at all when well.

I just want this suctioning nightmare to end.

At My Lowest Point

2 weeks ago I hit rock bottom.

Suctioning frequency increased, requiring waking up in the middle of the night every night. This is coming home following 2 intense months of near-death hospital drama.

It reached a point I wanted to send Vera away - back to the hospital. "No coming home until suctioning zero and back to normal sleep hours." I thought to myself. (I had started suctioning in March. It is June and I am still suctioning.)

The only problem was, sending her back to hospital would just expose her to infection again.

Here I am, stuck in a situation I can't change that's wreaking havoc on all of us.

Even Daen has wised up. He came into the room once and saw me tending to his sister and said, "Oh, not available" and walked away.

In the good times of the past, we had much more time together.

He's used to the busyness of suctioning Vera in the morning by now. As a result, he readies himself for school with less prodding - less attention, more independent.

Vera's still not back to normal hours. Until she does, our lives can't really go back to normal.

US Time Girl

Vera came back from hospital on US time zone. The no-day-no-night of hospital wards altered her circadian rhythm. When we wake up at 8am she'll fall asleep. She'll wake at 6pm.

We took turns to stay up with her through the night and it was terrible for us.

I refuse to follow her time. She's got to follow us instead. Now I just let her be at night while we sleep. I wake occasionally to check. And yes, we've resorted to help from sedatives.

I'm banking on Mr Sun to work his magic, so working in as much sun time as possible.

Vera's lost all her usual movements except for one arm. But I can't dwell on that right now. Gotta get her back to Singapore time first.

Suctioning is still on going with no end in sight. I'm hoping Mr Sun will dry up her lungs too.

The Spider's Web Undone

Right now I feel just like a spider. A spider that has spent so much effort artfully weaving its fine, intricate web, only to have the rain come and destroy the whole web.

Vera has lost so much of what she could do before this illness.

She's basically like a baby again. All the YEARS of effort - from her many teachers, ourselves and most of all Vera herself - gone down the drain after the hurricane came and went.

Yes yes, well meaning friends tell me she'll get better and be back to her normal self. Who really knows? I don't. All I know now is the PAIN of seeing Vera lose so much function. The HEARTACHE of no more scooting around, head control, sitting by herself, infectious smiles and generous hugs.

Yes yes she's out of danger, we're lucky she's still with us...but now's the time I'm really reeling from the aftermath. I MISS THE OLD VERA SO MUCH. And I need the space and time to get used to the new Vera.

Of course I'm going to try my best to help her regain whatever she used to have.

But right now, I wish I had the spider's non-human ability to just build its web over and over again each time it's destroyed, as if that were what it was born to do.

Mummy Falls Sick

And as so many times in the past, I fall sick once Vera is back home from the hospital.

Well, this is the 4th time I'm sick since she fell sick. My body just can't take the stress.

Caring for a sick child is hard when your sick yourself. Waking up in the night to do suctioning, is becoming harder as the years go by.

Hopefully things will become more manageable when I recover.

Day 2 Back Home

Vera was discharged from the hospital on Friday.

We had been there 4 weeks in PICU, 3 weeks in High Dependency.

While we are so relieved the daily hospital visits have ended, the journey to full recovery has just begun.

Her caregiver and I have to continue suctioning round the clock, as the secretions will not be completely gone for a while.

Vera's different than before. If you've seen how active she is, the change is evident.

As of Day 2:

Head control: poor
L hand: moving slightly like before
R hand: not moving much
L leg: slightly moving
R leg: not moving much
Sitting up: no
Signature smile: no
Remarks: grimacing at times

I've been on unpaid leave - thanks to my very kind boss - since Vera was hospitalised.

While I wish she could bounce back to her normal self and life can resume as normal, it's not going happen.

She shows signs that she's trying, so hopefully with time she can regain whatever function she used to have.

Difficult Decisions

Over the past month, Ian and I have had to make some of the toughest decisions as parents.

1. Deciding whether to intubate Vera

When Vera worsened and struggled to breathe, we were suddenly under pressure to decide very quickly if we wanted to intubate her. We knew intubation would be painful (having a tube down your throat all the time, and she'd have to be heavily sedated and on strong painkillers). Seeing her struggle to breathe, our gut feel was to go ahead, and for sure, it was the right decision.

2. Deciding whether to "upgrade" to more powerful Oscillator

When she was intubated and put on the Ventilator, the settings kept increasing to support her. Question was, if we'd reach the max of Ventilator capacity, do we upgrade to the Oscillator? After learning that they would need to paralyse her body in order to put her on the Oscillator, we decided not to.

3. Deciding what to do if she de-sats again

At the maximum settings of the Ventilator, Vera had two episodes where she struggled to keep her oxygen up. Each time, she had to be bagged several rounds to bring her back up. Those were her darkest days. We were asked what we wanted to do if she should de-saturate again and could not be brought back up. Doctors and ourselves were primed for it to happen a third time, but Vera spared us from that agony.

4. Deciding whether to re-intubate her

As the time came to extubate Vera, we were told that there was a possibility that she may struggle to breathe on her own without the tube. In such a case, putting it back in was an option. Re-intubation meant another few weeks of sedation, and subsequent extubation success was also not guaranteed. At such a point, surgery to insert a trach at her throat may have to be the ensuing course of action. We did not want Vera to go from a life of no suctioning when well to suctioning regularly round the clock. We decided against re-intubation.

It meant the stakes were high. She HAD to breathe on her own when off the Ventilator. To give her the best chance, together with the doctors, we tried to prolong the period she was on the Ventilator, to give her enough time to prepare. The trade-off? Very bad withdrawal symptoms later on for being on the sedatives for so much longer.

Going through this life-threatening episode has been a great learning experience for us.

We've experienced first-hand the kinds of treatment and equipment used in life-saving.

It gives us much food for thought: If it were us, how far would we go to save ourselves? If we were so knocked out and can't communicate, would we agree with whatever was done to us? How would we tell our loved ones, that we want to keep fighting or when enough is enough?