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.