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.