This was something we shared on HCA Starpal’s Remembrance Day 15th August 2015.
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 illness
Kaelyn 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.
We grieved about her diagnosis. It was like a death sentence for her. We’ve been through the stages of grief.
We 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.
Then we were kind of angry. How could it be? Who could play such a joke on us.
Can I give up years of my life for a normal life for my girl? Pretty please whoever is up there.
Whenever 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.
But 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 life
Take 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.
In 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.
We 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 encouragement
Kaelyn 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 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.
On 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.