A Mother’s Reflections

Meet Naomi, mother of a child with Crohn’s

Concerned and worried teachers
Called to voice their fears.
I was sick with worry,
Feared the worst of nightmares.
My child was losing weight,
At a rate you won’t believe.
When I saw it plotted on a chart
I felt sick, my legs almost gave way beneath me.

Something was terribly wrong.

My child’s face looked gaunt
He’d lost his youthful chubby cheeks,
His colour pale and see through
No energy to play, hardly ate now.
Sleep once his sworn enemy
became his dearest friend,
And I felt terribly guilty
I’m his mother, couldn’t I see?
Even though it happened gradually.

My child, he has Crohns.
If what it meant I had only known,
I would have understood,
When the doctors face
Turned ashen,
Sent my child from the room,
Looked me in the eye
And told me with gentleness,
Your child, he has Crohn’s.

My heart took a dive
Went on strike,
When I saw his face fall.
Your child, he has Crohn’s.
With relief, my mind called out that’s all?
I knew not what was in store.
If I’d only realised,
What it meant,
To mother a child who has Crohn’s.

Now began a string of tests
Each unpleasant in its own way,
Some were sore
Others embarrassing.
My child so brave
Wanted to sink through the floor.
For one he needed to take preparatory medication,
He wretched, he swallowed, he tried so hard
Then threw it all up…..to have to start again.

Hospital stays,
Doctors, nurses, dietitians to meet,
The decision was made,
6 weeks on a specific milk diet
Nothing else to eat or drink.
To help him gain weight,
And rest his poor tummy,
We hoped

It would do the trick.

I learnt how to make up his drinks,
Held my nose while I did,
For the smell?
I can’t even describe.
And my child? He had to drink.
I sat by his side,
Encouraging him sip by sip,
We had to get through the quota
In order for him to thrive.

My child, my champion
Tried terribly hard.
He hated the taste,
Could have given up then and there.
We persevered for two and a half weeks,
It was sip by sip.
Then the amount he could tolerate
Began to dwindle,
The intake no longer sufficient.

Next came steroids,
Knock the inflammation on the head they said.
His sleep patterns went haywire
Spent hours awake at night.
Too tired in the morning for school
I had company at home, yippee!!
He put on weight like a dream,
I couldn’t keep up with his appetite.
His siblings jealous of all he had.

I worried about his schoolwork
Falling behind, what could I do?
Juggling his aggressive moodiness,
And his siblings envy.
I wanted to give them each the best,
Lots of love and understanding.
Then try to help them see
The other’s perspective.
I failed time and again, miserably.

It’s been two years now,
With more hospital stays.
Feeding tubes put down his nose
That he couldn’t tolerate.
He threw them up,
I can’t even describe the unpleasantness,
Of having it put down,
Nor throwing them up.
He has been through so much, my child who has Crohn’s.

Another procedure,
He needs to be put to sleep again.
More preparatory medication
This time I’m wiser, he takes it slower.
It stays down, we’re both relieved.
It’s time to be put to sleep
He resists, he cries, he’s afraid
And I hug him, encourage him.
He gets put to sleep, before I leave, I bless my child.

The results from the exam,
Showed current inflammation.
We weren’t surprised
He’s as skinny as can be.
So we attended the clinic,
With ambivalence heard the report,
He must start on a new regimen,
With the worst of untreatable illnesses as a possible side effect
Would anyone know what to choose?

Between you and me,
I can handle a lot of the stuff.
What’s trying though,
Is watching my child suffer,
His childhood so different
From how I would have sketched it.
Very occasionally with tears in his eyes,
He’ll confide to me “life is tough”
For a child who has Crohn’s.

And I feel so helpless, so incapable as a mother,
To make choices where there are none.
And I learn yet again
As though it’s the first time,
That I am not in charge.
So I pray to the One Above
I trust Him, I know He is listening.
My child, is His child,
It’s Our child who has Crohn’s.