I WILL ALWAYS BE THEIR MOM

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

Thankfully

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, read her full story at Becoming Mrs. Rogers