March is trisomy awareness month. The most common trisomy is trisomy 21 which causes Down’s syndrome manifested by learning difficulties and classic facial features. This poem describes a woman’s younger brother born with Down syndrome.
Even though I was only four years old
I sensed something was wrong without being told
My baby brother was about to be born
My mother told me with an expression forlorn
That he would be “extra” special, little did I know
The “extra” was chromosome 21, that came as a blow
To my parents who were visibly upset
Of course I did not know who we would get..
*
Then you were born, and unfortunately
Tears flowing down my mother’s cheeks incessantly
You looked so beautiful, I could see
That you were extra special for me
I thought you were coming home but no
You had open heart surgery to undergo..
*
When you first entered our lives we were tense
And terrified, but gradually your presence
Brought unbridled joy in our household
Your cheerful demeanor was able to mold
All of us, we were used to being fast and impulsive
My son (who had recently penned a story based on the Chernobyl disaster in Ukraine from two children’s perspective) has been really distressed to see the Russian invasion of Ukraine, and the perceived inability to stop it. This poem is for our children who take in everything.
We take bullying very seriously
We try to discipline a bully
And the ones who are bullied, protect
We teach our children self-respect
So with being bullied they learn to deal
Now they see how bullying is being revealed
On a world stage, as a megalomaniac drunk with power
Bullies Ukraine increasingly by the hour
And all the adults who sit in positions prominent
Watch haplessly at a devastating war imminent
They had told the children to not tolerate
Bullies, when faced with one, instead,
Of trying to fight they stand back
Placing worthless sanctions, without the nerve to hack
The unbridled aggression unleashed by the bully
The plight of the bullied Ukrainians our children see..
*
The world is manipulated by people with power
Is unfortunately the narrative of the hour
We tell our children to pray for the oppressed
But we fail to show them how the bully obsessed
With demonstrating his power we can restrain
I hope we can change the narrative again
And tell our children that bullying is neither going to be
Tolerated in school, or tolerated globally
(Sunflower is the national flower of Ukraine, hence the image)
Trigger warning- this is a painful poem that describes the anguish of a parent who needs to give consent for a life-saving procedure for her child, something like a transplant, that is the child’s only chance to live, but comes with a long list of potential complications.
In a meeting room with walls that are bare
I sit, wringing my hands anxiously, aware
That as parents we are expected to pay attention
To take notes for reference, ask questions
But I am a nervous wreck as with my husband I wait
To be explained the life-saving procedure to change our child’s fate
This is the process of informed consent that we must go through
It suggests we have a choice but I don’t think we really do
*
The team before us seems well-versed in their spiel
Although the tone suggests the procedure is not a big deal
They go through major, sometimes life-threatening complications
In much detail, as I try to absorb the implications
Of undergoing this procedure- I wonder how other parents
After hearing these details are able to give consent
When so many things can go wrong, how do you choose
What is supposedly life-saving, when life you can almost lose
Especially for your child, how do you make this decision
How would you forgive yourself if there arose a serious complication…
*
As the information session comes to a conclusion
One message rings clear through this confusion
We are caught between a rock and a hard place
We cannot wish the disease away, we have to face
The reality that the choice is between death and a chance to live
And what parent on this planet would not that chance give
To their precious child, so our decision is made
We sign the consent and prepare to wade
In turbulent waters for the future foreseeable
We have to get through a challenge formidable
*
All the complications that in the realm of possibility reside
I clear from my head, I hope luck shall be on our side
I concentrate only on the procedure’s benefit and pray
That my child shall live to see many, many more days
In a world where we are still masking (especially in hospitals and clinics), sometimes not seeing someone’s facial expressions hampers interactions. I am strict about masking, but there are times seeing someone’s smile (or pursed lips as an expression of disapproval) helps. Oh, I know our eyes can convey smiles too, but sometimes botox hides the laugh lines around the eyes!
Did I miss something when I did not see
Your face, I did subject your uncovered eyes to scrutiny
Did the non-verbal cues I would otherwise perceive
Get missed, am I right when I believe
That our interaction was inadequate, incomplete
Despite both of us trying our best to repeat
Our words, to make sure we were understood
Changing our tone and inflection so we would
Be able to convey everything we wanted to
We used our hands, as a substitute too
As I prepared to conclude our encounter, dissatisfied
You removed your mask briefly, and gave a smile wide