25 May 2018

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.

11 May 2018

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.

13 March 2018

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.

30 January 2018

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. 

10 January 2018

Luxury of Time

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

04 December 2017

Holiday Sensory Time

It gets harder to get Daen to engage with Vera as he grows up. Here is a rare moment he gets involved in sensory therapy for Vera since it's the school holidays and they see each other more.

16 October 2017

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.

09 July 2017

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. 

11 June 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!

20 January 2017

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.


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.

14 January 2017

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.

25 December 2016

A Christmas to Cherish

The best gift this Christmas - Vera and Old Mama still here.

10 December 2016

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.

23 November 2016

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. 

12 November 2016

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. 

06 November 2016

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.

19 October 2016

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.

30 September 2016

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.

28 July 2016

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.

27 July 2016

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 unknowablebroadly :  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."