Sunday, April 24, 2016
My neighbour's boy, Jayden, drew a picture for her beforehand. It is a picture of them out at sea on a boat enjoying the day.
We went out and didn't think of how to end with the drawing. One of us made it into a paper boat. We tied balloons of Kaelyn's favourite cartoon character to it.
We dropped off flowers, set the paper boat off and reminisce as we watch the paper boat sail away.
Truly grateful for the friends that remembers her. Also very proud of my girl in the way she left impressions among people who interacted with her.
A year later after we laid Kaelyn to rest, it still hurts when memories of us together flood my head. Time heals all wounds they say. This statement is a lie. This wound never heals. It will only be buried by the hustles of life, but never healed.
Also written at KiwiNinja
Tuesday, February 16, 2016
Friday, August 21, 2015
It is a 4 episode series featuring babies/toddlers who require special care.
This documentary series was aired on Channel U
Kaelyn initially wasn't supposed to be featured that much but for some reasons, she got more involved and was featured much more than we had expected.
She passed away 4 days after her final filming session.
Grateful for the production crew and the chance that Kaelyn got her story told.
The YouTube links are below. For some reason, some portions of the videos are silent or lack background music, which are not production fault.
This is a day where they remember the sons and daughters under the care of Starpals, who have earned their wings.
Kaelyn will be 3 1/2 years old exactly tomorrow. However she isn't around anymore.
She passed away on April 23rd 2015 due to Spinal Muscular Atrophy Type 1.
We have been invited to share abit on this day as we remember our kids who have been around.
Discovery of her illnessKaelyn was born normal but at age 6 months, we were told she have muscular atrophy type 1 by a neurologist.
We didn't know what it was. We went home checked the Internet about SMA Type 1. It sounded and is horrible and terrible as those affected will lose control of their muscles and will atrophy.
Anything that requires muscles will be affected. From sitting, moving and even breathing.
And her symptoms totally fit.
We were devastated even though the results had not come back. We waited for 2-3 weeks for the result to come back.
GriefWe grieved about her diagnosis. It was like a death sentence for her. We've been through the stages of grief.
DenialWe try to tell ourselves it may be other reasons why she is so weak.
How can it be this genetic disease when we do not remember of any family history.
We keep thinking she could be slow in development. Or she is taking her time to grow stronger.
AngerThen we were kind of angry. How could it be? Who could play such a joke on us.
BargainCan I give up years of my life for a normal life for my girl? Pretty please whoever is up there.
DepressionWhenever we thought of her diagonsis, we would tear up. Why does this little child of mine have to suffer from such a disease.
After 2-3 weeks of waiting, we received her result. We cried and cried that day.
AcceptanceBut that was the day when we tell ourselves that Kaelyn young as she might be, will know and feel the mood.
We shouldn't let her think that why is she always making her mummy and daddy sad.
We told ourselves that we should simply keep her happy, and at the same time treat her as normal kid as much as we can.
Our daily lifeTake away the BiPap, milk pump and other equipment, She is just a normal little girl.
She wants to munch on food, even when she is tube fed from 10 months old onwards.
She wants to watch her TV shows.
She loves dolls.
She loves to paint her nails.
She loves to go to the playground. And she throws tantrum if she feels she haven't spend enough time at the playground.
Insert medical emergencies now and then, and physio session everyday, we try to give her a normal life.
As long as she's happy. We told ourselves.
Lesson learntIn the documentary where Kaelyn was filmed. We were asked if we've learned anything.
I did not really have an answer. As it happened quite fast
But we think now we have.
Think positiveWe are encouraged by her positive outlook of her life.
She has been tube fed for most of her life.
One day at the playground, we asked her if she wants porridge when we get back home, she did a HAHA! Because she knew she is tube fed so no porridge for her.
At the playground, she is very content to watch kids play. Though I believe she deeply desires to be able to run up the slides, slide down, and then do it repeatedly.
You could say this was the only life she had. Immobile and tube fed. But we cannot deny that she has a always been cheerful and contented most times of her life.
Sharing and encouragementKaelyn most times is willing to share what she has, or what she knows.
In one of the hospital stay, Kaelyn was going to do her chest physio and cough assist.
A young doctor happened to be around and asked what's a cough assist.
Mummy asked her, Doctor don't know what's a cough assist. Can you show him how we use it?
Kaelyn answered loudly yes! She went on bravely to do her coughs and suctions, as if she was doing a product demonstration.
We were encouraged by her to share her story to encourage anyone in a similar boat.
Her passingHer deterioration came as sudden as lightning. After few days in ICU, We had to let her go.
We had been mentally preparing for such a day to come. But when it came, we still weren't prepared.
It's like we had a dream of 3 years 2 months and 7 days.
A poem I came across, Author unknown
A butterfly lights beside us like a sunbeam
And for a brief moment its glory and beauty belong to our world
But then it flies again and though we wish it could have stayed...
We feel lucky to have seen it.
ClosingOn this day, we remember our little angels, who have departed prematurely in their lives.
Ultimately, their lives are much shorter than normal.
How long? we don't know at that time. We know we just want our kid to be happy.
Though unwilling to be apart, we rejoice in the hope that Kaelyn has a whole body, and is free from the shackles of her old body. Now she is free to run, hop and play.
Thursday, May 14, 2015
One of the few celebrations we had for her birthday. Happy times...
Tuesday, May 5, 2015
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.
Tuesday, April 14, 2015
I had to drop by the hospital as I have arranged to meet the parent of Chloe to pick up some things.
They are one of the family in our support group.
I was there as the nurse was attempting to set the IV plug on the wrist for Chloe’s treatment.
This is a weekly event for Chloe.
The nurse tried 2 or 3 times to find the vein but couldn’t.
I left. But they did eventually set the plug successfully on the other arm
I thought of Kaelyn resting at home nursing her infection. It’s been 12 days since she started having intermittent fever.
We are contemplating hospital admission but don’t wish to risk any other form of infection (although you could say she already is)
We have increased the intensity and occurrence of her chest physio daily in the attempt to keep her lungs clear and open as her mucus generation increases following the onset of some form of infection.
When she’s sick, her schedule are like this 1. Wake up 2. Start nebulizer 3. Chest percussion (this could take awhile) 4. Cough assist and suctions 5. Rest/play 6. Nap
Repeat the above for 3 times during the day time.
Our coughs, percussion and suction could take quite a while (as long as 2 hours sometimes) as we try to clear her airways properly.
We jammed up 3 suction catethers attempting to clear her single nasal airway yesterday. It was thick and sticky even after the nebs.
The treatment/therapy takes out a lot from Kaelyn. She looks dead beat after that.
As a parent, I believe it hurts for parents to see their child go through such pains of probing and piercing, let alone on a regular basis.
We could only try our best to console the kid as they undergo the treatment/therapy to get them better.
Making them undergo treatment/therapy are sometimes between the devil and the deep blue sea.
If only pain is transferable.
We don’t wish to but we have to. Sigh.
Note: I understand there are individuals that may ask why put them through more pain in their life. Of course this question definitely comes to the mind of the parents of special needs kids. But that would be another topic for another day :)