Another noble story...
Frequented to hospital since 2008.
A mother gave up her work and started to concentrate on taking care of this little cute girl.
A girl with an extraordinary disease named: Rapid Obesity with hypothalamic dysfunction, hypoventilation and autonomic dysregulation,
in short, ROHHAD syndrome
I bet you never heard of this as I think she is the only one in this country diagnosed with such disease.
Just a few being diagnosed worldwide and she is one of the unlucky guy.
Sadly,
she cannot breathe as normal people.
She depends on oxygen supply from oxygen concentrator, a bulk machine that her mother has to carry to anywhere she goes, school, hospital, home, just to name a few.
With her permanent tracheotomy for breathing purpose, she frequented to hospital due to minor infection. But it is serious to cause her ill as nobody.
You could not believe that mother was moved to KL
and stayed inside hospital KL for 2years when her child was sent to KL for very first diagnosing and treatment.
A hard time for mother for these past 2 years.
Giving up job and fully taking care of her child.
Mother told me, ' I'm bored to being isolated inside the room. I could not go anywhere.'
but yet I could see form her eyes that she was not blaming for anything.
In a morning after ward round finished, I went to her room checking her medications.
And we started conversation.
Mother shared her stories with me.
Mother spent a lot of money and time, buying the feeding machine and learning everything she needed,
Suction-helping to reduce the phlegm and food particles which may block airway
Feeding-mixing milk, blending juice and putting them into the feeding bag before operating it
Giving medications-administering the right drug and dose, especially during crisis
Operating oxygen concentrator-learning by herself in which doctors do not even know how to switch it on...haha
just to name a few.
Basically, mother learned to be a nurse,
a pharmacist,
a physiotherapist,
a doctor, perhaps
a multitasking mother! Thumbs up!
Mother knows medications well.
She knows her child developed allergy to a few medications.
She knows what to give at the right time.
During the conversation,
I noticed that mother suddenly slapped gently at the child's cheek when the child was lazy to give response to mother.
I was surprised at first.
and I knew how stress the mother was.
She was not intended to hurt the child,
soon she hugged the child tight, saying: Sayang ('Oh Dear' in Malay)
with tears
Without her notice, I leave the room.
Sometimes,
we could not understand their feeling
we might feel empathy
but this is true love between mother and child
Cherish your every moment with your dearest mother.
My two colleagues and me gathered after 5pm.
