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.
The journey of an extraordinary girl living with Trisomy 18
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.
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.
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.
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.
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.
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.
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.
|Photo from Ronald McDonald House Charities Singapore|
"A simple child, that lightly draws its breath, and feels its life in every limb,
What should it know of death?"
- William Wordsworth