Thursday, May 9, 2019


First I was a girl
Then I met him and I became a wife
I held our firstborn in my arms, and I became a Mom
We became a family

I worried about a sniffle, a cough or a tumble
He grew, but at a rate that didn’t seem quite right
A Mother’s instincts are stronger than facts

We longed for more love
So we had another son
As I held him in my arms
Many questions surfaced

The day I heard “diagnosis” was a new chapter of sadness
My worries grew and grew
I felt unrelenting guilt as I gazed into his blue eyes
The gene came from me

I prayed to God for some kind of resolution
If only I could do more
I knew if I did more that it would cause a cure

No cure came
But the behaviors and challenges did
I saw my sons as a representation of Fragile X
Long face, prominent ears, speech delays, motor delays
It defined my every waking moment

I didn’t know how to love this
I had to redefine my expectations

I quickly learned to always have the green Gecko shirt clean
Then I learned to buy 5 of everything
Then I taught him to do his own laundry

Waiting was especially hard
So I hurried at everything
Then I taught him how to wait
This took a very long time

I was consumed by all things Fragile X
School meetings, therapies, strategies, approaches
Each day was a learning experience
How to dress, how to learn, how to care for their every need
Then I saw that they could learn some things
And do some on their own

As the years passed, we continued to learn together
I focused on tasks and jobs and life skills
They rose to unexpected heights
They taught me patience and perseverance
I am still learning those

Together we learned how to live together
I learned how to cope with my own expectations
They learned how to tolerate me

Then, finally, we learned how to live
It took me a long, long time
I had to give up the traditional definition of Mom

We had to learn how to spread our wings
And fly together
In an unconventional path

Now, I almost never think about Fragile X Syndrome
I like to think about quality of life
Sometimes it’s a quality of life without me
Without Mom

I’ve learned that it’s ok to think
About their life without me
Life without Dad
Life without family

It allows a new realm of thoughts to emerge
New thoughts about reality
New difficult questions
Who will care for me and Dad
What about our own retirement

These question bring about worry
But it's also forced us to act
Action has brought about peace and contentment
We are able to breathe deeply
We are able to feel encouraged

I found out it can be ok
We are making plans
Transition plans
Quality of life plans
Difficult plans

The best things can happen when
I allow myself to think ahead in a positive way
To take action instead of worrying
The good people come through
They emerge when I least expect it
This has taught me to have faith

Nothing has ever or will ever be perfect
That’s part of my own learning
But they are perfect
And I am their Mom

I’m glad I’m their Mom
Even through all of the really hard parts
I’m grateful for all of the learning
Mostly for learning to cope

I’m forever a Mom
To two amazing sons
The learning will never be done
I will make mistakes
But they love me anyway

At 28 and 30
They still hug me daily
They still call me “Mom”
My love could not be any deeper
I will always be their Mom

To learn more about Cindi Rogers, her book or follow her family, please visit mrsrogersworld

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