Parenting
nowadays can be really tough.
You
have to compete for milk and diaper brands, pre-schools and kindergartens, then
in later years, to enrol in suitable primary schools, and suffer anxieties over
PSLE and choices of secondary schools before your child brave through the
"N", "O" and "A" levels.
But for Straits Times
correspondent, Amelia Teng, 29, and her one-year-old son, Christopher, tough is
an understatement.
You have to read her article to
fully understand what she has to go through in just the first year of
Christopher's birth. It's in the Sunday Times today A4.
I will not in words or commentary
here do any justice to the travails of this young mother. Neither will I do
justice to her incredible strength and faith and her (and husband's) love for
baby Christopher.
You see, Christopher was born
with a rare condition known as "bile acid synthesis disorder".
This is a rare genetic disorder
inherited from Amelia and her husband. Both of them share a bad copy of the
same gene.
When Christopher was diagnosed
with this condition, Amelia was told that he is the hospital's first patient.
It is estimated that 5 out of a million children have this condition worldwide.
Amelia discovered it when she
noticed that "a scratch and a prick from a blood test left (Christopher's)
nose and finger bleeding for more than 30 hours."
It reports that "this
disorder interferes with the production of bile acids, such as cholic acid,
which help the flow and excretion of bile from the liver and assist in the
absorption of fat and fat-soluble vitamins from food. Without cholic acid, toxic
bile acids accumulate and damage the liver, causing it to fail
ultimately."
The solution for Amelia and hubby
is the synthetic production of cholic acid.
But cholic acid does not come
cheap. Based on the hospital's recommendation, the monthly outlay came up to
$26,700. As Christopher will be on the medication for life, that works out to
millions.
Amelia even considered liver
transplant to lower the costs, but doctors said that it would result in other
complications.
So, she had to source for cholic
acid elsewhere, and with her doctor's endorsement, she managed to secure a
batch of cholic acid for $5000 a month from Melbourne.
Thankfully, she got a friend to
ship it back for her. She admits that this is just a stop-gap measure.
Currently, Christopher is
responding well to the medication, and Amelia and hubby couldn't be more
grateful and thankful for the prayers and love she had received from loved
ones.
In the meantime, Amelia has to
confront the following daunting and sobering reality.
First, she applied for Medication
Assistance Fund Plus subsidy of the high monthly medical cost, but she was told
that the drug Christopher needed was not listed with the Health Science
Authority.
But to get cholic acid listed, a
pharmaceautical company has to pay $10k. And it will take years to get listed.
No profit-sensitive company will want to do it for only one known patient here.
Second, she was told that her
son's treatment did not fall under those approved by Medisave. Neither did it
satisfy the MediShield Life criteria, thereby closing doors to
government-assist funding.
Third, Christopher was not
covered by any private insurance and again, no profit-sensitive private company
would want to sign Christopher up.
Lastly, Amelia also tried to
admit Christopher into clinical trials, but none were available.
Alas, this will be Amelia's world
in the near future, and with a brave front, she said this: "I knew raising
a child was not going to be easy, but I did not think these challenges would
come so early in parenthood."
Amelia has no delusions about
Christopher's future. She knows the costs and sacrifices waiting for her and
her hubby.
And she takes nothing for granted
because everything she does for Christopher are moments of "life-changing"
experience.
She thought breastfeeding was
painful, but nothing would have prepared her to see her son "confined to a
bed hooked up with wires and drips" and "spending hours every month
keeping hospital appointments, drawing tubes of blood, hoping, then cheering
when (they) saw improving liver enzyme figure."
She thought that spending on milk
and diaper brand, and picking out baby's romper would be a chore, but nothing
would have prepared her for the cost of medication, which would deplete her
savings in the long run. Thus far, she had spent $60k.
And she once thought that having
a second child would be the next logical step to give Christopher a sibling to
play with, but nothing would have prepared her to receive "counselling
about alternative options for conceiving a second child, who has a one in four
chance of inheriting the same problem from (them)."
Amelia added: "The first
year of parenting was nothing like what we thought it would be like. It has
been like a storm, forcing us to rethink priorities and perspectives. We accept
that our son was given to us for a purpose that we do not fully understand yet.
But the joy he brings is also beyond what we expected."
This is the joy Christopher
brings in return for a parent's unconditional love and devotion as tenderly
described by his mother:-
"He was just 2cm when I
first saw him on the ultrasound, and heard his heart beat. I could hardly
believe I was carrying such a precious eight-week-old gift.
Now he has crossed the one-year
mark, and we love all 10kg and 74cm of him. He squeals, laughs, smiles and has
a lot of personality. He is a cheeky monkey, loves music, and big open spaces
where he is free to crawl at full speed.
He cries like he is being
tortured in anything that confines him, like the car seat and the high chair.
He hates it, but is a champ at taking medicine after months of training."
She concluded: "My son is
not an error - he was made special beyond measure. It's in his genes."
Lesson? Three, and it is in
Amelia's own words. She recounted:-
"I told a friend recently
that this first year has been so eventful. "Life-changing," he
corrected me. That is a much better word on second thoughts.
Because of the lessons my son has
made us learn - to be more resilient in the face of chaos, to cling onto hope
when life springs hurdles, and to be thankful for little blessings along the
way."
1) "More resilient in the
face of chaos".
I recall in Job 5:7 these words:
"Yet people are born to trouble, as surely as sparks fly upward."
But there is another part to
that, and it is that people like Amelia will rise up to the occasion just as
sparks fly upward. That's the devotion of a parent, and it is indeed life
changing for the parent, the child and the people around them.
And the resilience of a parent's
love is that it grows together with the trouble, and at some point, it outgrows
the trouble.
2) "To cling onto hope when
life springs hurdles."
I believe that people who hope
are like bridge builders. Where some people see only huge gaps, people like
Amelia and her hubby see vision of bridges (even when none could be seen
between the gaps).
But these visions of bridges do
not come prefabricated for easy assembly. They are built over time, with
perseverance, brick after brick.
And with every brick laid with
tears of labour and joy, the bridge builder draws closer to the goal, until one
day, he find himself on the other side.
And,
3) "To be thankful for
little blessings along the way."
It is said in first Timothy that
"everything created by God is good, and nothing is to be rejected, if it
is received with gratitude."
I always believe that one can
never be happy, fulfilled or content if he or she is not grateful.
Like hope, gratitude will not
make everything perfect or smooth, but it will surely make all things imperfect
meaningful.
In other words, it somehow
transforms sadness to gladness, tears to joy, mourning to dancing, adversity to
overcoming, and pain to growth.
Gratitude does not make life
bearable, but it makes it surmountable, and in eventually surmounting trials,
this life promises meaning, deep resilience and boundless hope.
Amelia's love for Christopher
arises from such perspective of gratitude. She does not see her son as an error
but a gift, not perfect but perfecting, and not normal but simply "special
beyond measure".
Thanks
Amelia for such priceless lesson for the close of 2017. Amen. Cheerz.
