I edited this fully, leave it in my phone and didn't upload it until recently.
One of the few celebrations we had for her birthday. Happy times...
Thursday, May 14, 2015
Tuesday, May 5, 2015
Epilogue - Kaelyn's Journey
It's been slightly more than a week. I come home from work and home's quieter than usual.
There is no beeping sounds from the oximeter, humming sound from the oxygen concentrator or sound of air gushing through the BiPap machine.
The most significant absence is the sound of Kaelyn and mummy's playtime, the constant bantering between Kaelyn and our helper whenever they are together, and Kaelyn calling me as I walked past her room to mine to drop my stuff down after work.
It will take a while to get used to the lack of these noises.
This is the new usual, it seems.
It all seems like a dream.
We bade farewell to Kaelyn almost 2 weeks ago. She earned her angel wings.
Though the journey with her short, it was also intense.
Her diagnosis of SMA Type 1 at that time was like a bad dream.
But I do know the time spent together is very real.
Since her diagnosis, we have tried our best to keep our promise of keeping her happy for as long as she lives.
We are prepared for this day to come, but we are never ever prepared.
Until her last conscious day, she was still cheerful and playful as always.
She remembered all the story telling, dancing moves and the singing by those that drop by and visit her. She loved it all.
She really digged the photo shoot by Portrait from the heart. She wasn't fussy and in between shots she would take a break, just like a diva would, except she puts on her BiPap for some breath and to clear her secretions, then snap some photos once more.
Most importantly, that was our only proper family portrait, which we cherish it dearly.
When she was well few days before the acute incident, we've contemplated about few issues on change of a different feeding tube, quality of life issues and her comfort.
Our helper was thinking of heading home and ending her contract at year end. That will need mummy to stop work and/or find a suitable helper to hire at home.
No firm decisions were made at that time.
Kaelyn is always decisive about her choice of playtime, clothes to wear or cartoon to watch.
On one warm day after her bath, she decided it was too warm to put on clothing. she FaceTime her noon time call list, wearing only her diapers, and seemingly proud of her playful defiance.
Refusing all appeals to put on clothing, She allowed her helper to dress her only after grandma said anyone walking outside naked can be caught by the police.
This time round, just like her normal feisty self, she seem to choose her way.
There was no need for anyone of us to make up any decision for her.
And it seems like this was actually the best way for her, judging from all the circumstances.
When well, Kaelyn regularly goes to the playground below the block and just look at the kids play.
Occasionally, she wants one of us to play on the swing or work out on the exercise station. It is as if she does what she wants to do through us.
You have always yearn to play on the swings and merry go rounds in the playground.
It has been tough on Kaelyn physically, but she has endured it all, always coming out of situations with smiles and cheerfulness.
I was wrong. You have been brave. You have been a fighter.
Your fight is over now. You have broken free, and with a complete body. Go now girl (still my baby), have an adventure of your own.
There is no beeping sounds from the oximeter, humming sound from the oxygen concentrator or sound of air gushing through the BiPap machine.
The most significant absence is the sound of Kaelyn and mummy's playtime, the constant bantering between Kaelyn and our helper whenever they are together, and Kaelyn calling me as I walked past her room to mine to drop my stuff down after work.
This is the new usual, it seems.
It all seems like a dream.
We bade farewell to Kaelyn almost 2 weeks ago. She earned her angel wings.
Though the journey with her short, it was also intense.
Her diagnosis of SMA Type 1 at that time was like a bad dream.
But I do know the time spent together is very real.
Since her diagnosis, we have tried our best to keep our promise of keeping her happy for as long as she lives.
We are prepared for this day to come, but we are never ever prepared.
Until her last conscious day, she was still cheerful and playful as always.
She remembered all the story telling, dancing moves and the singing by those that drop by and visit her. She loved it all.
She really digged the photo shoot by Portrait from the heart. She wasn't fussy and in between shots she would take a break, just like a diva would, except she puts on her BiPap for some breath and to clear her secretions, then snap some photos once more.
Most importantly, that was our only proper family portrait, which we cherish it dearly.
When she was well few days before the acute incident, we've contemplated about few issues on change of a different feeding tube, quality of life issues and her comfort.
Our helper was thinking of heading home and ending her contract at year end. That will need mummy to stop work and/or find a suitable helper to hire at home.
No firm decisions were made at that time.
Kaelyn is always decisive about her choice of playtime, clothes to wear or cartoon to watch.
On one warm day after her bath, she decided it was too warm to put on clothing. she FaceTime her noon time call list, wearing only her diapers, and seemingly proud of her playful defiance.
This time round, just like her normal feisty self, she seem to choose her way.
There was no need for anyone of us to make up any decision for her.
And it seems like this was actually the best way for her, judging from all the circumstances.
When well, Kaelyn regularly goes to the playground below the block and just look at the kids play.
Occasionally, she wants one of us to play on the swing or work out on the exercise station. It is as if she does what she wants to do through us.
You have always yearn to play on the swings and merry go rounds in the playground.
It has been tough on Kaelyn physically, but she has endured it all, always coming out of situations with smiles and cheerfulness.
I was wrong. You have been brave. You have been a fighter.
Your fight is over now. You have broken free, and with a complete body. Go now girl (still my baby), have an adventure of your own.
Thank you for God for the peace and serenity you've granted her in her last days. May you watch and bless your fellow little fighters.
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