Better, Together

Our little girl was only about 10 days old on that first trip to the pediatricians office.

As we sat in the waiting room, having no clue of the coming storm, a couple of fellas sat in the waiting room with their guitars. They sang and strummed; we listened. As a mother, I soaked it all in - every feeling of anxiety, every move my little daughter made, every interaction with our 18-month old, conversation with my husband; everything around us seemed to stand out and make an impression on my memory.

It took a long long while for me to discover what song these guys sang, but eventually the connection was made: Jack Johnson, Better Together

There is no combination of words I could put on the back of a postcard
No song that I could sing, but I can try for your heart
Our dreams, and they are made out of real things
Like a, shoebox of photographs
With sepiatone loving
Love is the answer,
At least for most of the questions in my heart
Like why are we here? And where do we go?
And how come it's so hard?
It's not always easy and
Sometimes life can be deceiving
I'll tell you one thing, it's always better when we're together

Mmm, it's always better when we're together
Yeah, we'll look at the stars when we're together
Well, it's always better when we're together
Yeah, it's always better when we're together

And all of these moments
Just might find their way into my dreams tonight
But I know that they'll be gone
When the morning light sings
And brings new things
For tomorrow night you see
That they'll be gone too
Too many things I have to do
But if all of these dreams might find their way
Into my day to day scene
I'd be under the impression
I was somewhere in between
With only two
Just me and you
Not so many things we got to do
Or places we got to be
We'll sit beneath the mango tree now

It's always better when we're together
Mmm, we're somewhere in between together
Well, it's always better when we're together
Yeah, it's always better when we're together

Mmm, mmm, mmm

I believe in memories
They look so, so pretty when I sleep
Hey now, and when I wake up,
You look so pretty sleeping next to me
But there is not enough time,
And there is no, no song I could sing
And there is no, combination of words I could say
But I will still tell you one thing
We're better together

----

The days have grown into weeks which have now become years; and this past week it has been four years.
And it has not always been easy.
But it has always always always been worth it.
We're definitely Better Together.

First steps

I'll never forget the moment where the reality of diagnosis began to sink in. Through the fog of disbelief a thousand questions began clamoring for attention. Among the few that rose to the surface:

What does all this mean?
What does the future look like?
Will we be able to handle all this?
Where do we go from here?


Through the weeks and months that followed, I wrestled with these questions and fear of what the future would be like. My highly creative and active imagination provided much fuel for the fire and it was not an easy time. Through this, however, a phrase began to take hold and grounded me in the moment:

While a diagnosis provides a framework for dealing with a particular set of circumstances, it does not define who we are or what we are capable of.


It is helpful to have a framework in order to understand, and effectively manage, the things that life brings our way.
It is not helpful to be limited by a definition or a label.

This brought a tremendous sense of freedom as we began to seek out a balance in our circumstances. Each of us has potential, and it is a joy to share in each other's journey. Milestones became celebrations rather than looming goals to attain. Laughter returned, a healthier perspective set in. The diagnosis became a tool rather than the rule. It was a big step toward acceptance and an abundant life.

What is normal, anyway?

Anyone who has ever had the opportunity to become acquainted with the ups and downs of life with additional considerations will inevitably be asked... "What is "normal" anyway?" Usually this comment comes with a sincere, underlying desire to ease the anxiety that "anything outside the typical mold" is cause for alarm.

It is true that each individual grows and develops according to their own unique biological clock. It is equally true that on occasion, a deviance from what one can typically expect at any given stage is an indication of something concerning, something requiring further exploration. The challenge is to find the balance in considering the two realities.

We tend to equate "normal" for "no need to worry." For those who face a life that is "not normal," who overcome additional challenges and considerations as they develop into the person they have been created to be, the difference between "normal" and "not" can feel quite overwhelming. Perhaps it creates a loneliness, or a maturity that is not matched by one's peers. Or, it can mean the difference between a "predictable life" and one filled with doctor appointments, good and bad news, waiting and test results.


The illusion of "normal" - or rather, the absence of worry - may seem very appealing indeed!!

Perhaps it is best to embrace this tension by suggesting that what is come to be expected for one child or one family can be (and usually is) different than what is typical for another. What is "normal" for one is different, yet perhaps no "better" or "worse," than what is "normal" for another.

How do you define normal?

Welcome to the journey!

Parenthood. It's among the most amazing, the most stretching, the most beautiful of life's experiences. It's exhilarating, and exhausting, consuming and rewarding; it takes all you've got, and then some :).

Welcome to the journey!
Nothing quite prepares you for it.
Nothing quite compares to it, either.

Now, perhaps things didn't go exactly as planned.
Maybe, during pregnancy, you discovered that additional challenges lay ahead.
Or, during birth, it became apparent that this was going to require even more than you ever thought you had it in you to give.
Or, as the weeks and months and years rolled by, the challenges became intense, worry set it and before you knew it you were wondering just how different "different" going to be.

Welcome to the journey of parenthood.... with a few extra considerations.

Some are now grappling with terminology that, prior to this, only applied to other families.
Specialists and therapists.
Cognitive challenges like development delay and learning disabilities.
Physical considerations and special equipment and exercises.
Therapy and milestones.
Social concerns and inclusive learning opportunities.
Regressive. Progressive.
Medical needs and appointments and procedures and tests.
The list goes on.

And underlying all of the tension and waiting and wrestling is a heart-aching question:
Will life ever feel safe and "normal" again?


You are welcome to join in the incredible journey of life with different abilities. Let's explore, celebrate, discuss, share ideas and swap stories together!