From here to there

After finding this quote, I knew I had to have it in my home.
So, I bought a cheap canvas and spent a few delightful hours with my paint and brushes :).

Sometimes I still get too focused on the skills we need to practice.
And still, sometimes I get frustrated by the process.
And sometimes it feels like we'll never get "there" from "here."

And truthfully, some skills we'll master, others will take a bit more time, and still others -- maybe not. We'll see. However, life is not about the achievements, it's about how the time is spent along the way.

Emotions

Feelings.... nothing more than ... feelings.... crooned Morris Albert back in the seventies.

This past month marked our fourth year on this journey that started off much differently than we had anticipated. And as we celebrated, I reflected on all those emotions that overwhelmed me during that first season....

Fear
From the moment there was the suspicion that something might be different, fear lodged itself deep deep within and surfaced repeatedly on a daily basis. What if.... how am I going to handle the extra responsibility.... what type of impact will medical issues have on our family.... what if I'm caught in a situation and I don't know what to do.... Questions circled around and around and around, often spinning wildly out of control. I overanalyzed every doctor visit. I dreaded appointments, but lived for each one, hoping for positive information. I found it hard to leave the kids (we had two girls at the time) even for a little while. If I did leave, and found myself running late, I had to remind myself not to panic, that 10, or even 15 minutes wouldn't make a big difference. In short, I had to learn how to be a parent all over again. Those first two years, really, were about recovering confidence that had been shattered, about facing stuff you never thought you'd have to, and finding that not only is it doable, but can be very rewarding too. Fear still comes knocking, every so often. And sometimes I even entertain it for a while. But then I remember how far we've come. And how far we'll go. And I take a deep breath and do it one day at a time.

Frustration
We have some wonderful therapists as part of our life. Primarily we have occupational, physical and speech therapy. Consequently, though, there has been tremendous focus on development, emphasizing learning and growth, and often with a nagging sense that someone was watching over my shoulder. I remember, way back at the beginning, when I was trying to figure out how all of this was going to fit into our days. It seemed so overwhelming at the time. Trying to encourage developmental play was so frustrating for both of us!!! It took me a while to realize that there is a BIG DIFFERENCE between forcing and facilitating learning. In my anxiety, I tended to the former, trying to keep things as "close to normal" as possible. Now, four years into this experience, I still get frustrated when I realize that my expectations are out of line with what is reasonable at this point. It is a learning process, for both of us.

Fatigue
An issue that we have dealt with, and it continues to be a struggle, is fatigue. It is well known that children with development issues often have problems sleeping well at night. Our little sweetie is no exception to that rule!! While the details of that are another post for a different day, it is suffice to say that learning how to absorb all of this, with very little sleep, is a challenge.

Grief
How does a parent come to terms that their child may never say their name? May never utter "I love you"? May never run like the other kids do or play one step behind because these precious little ones just don't understand the social rules? The severity of our situation is not nearly as challenging as was first predicted, for which we are thankful, but every so often we get glimpses into this ache of the heart. When our little one lags behind, or the words just won't come or there is simply something we just cannot understand. Instead of trying to absorb the whole picture (which we never know anyway!), I move through one day at a time, giving space and dignity to each sadness that comes along, and ensuring we celebrate the victories.


Love and a deep sense of joy
Our little one was only weeks old. I sat on our bed, holding her, thanking God for each special, intricate part of her being. It was not easy, this moment of acceptance. But it was beautiful and freeing. Whatever life held in store for us, we were going to do it together. I had the honor of being her mother, of participating in her life story, of witnessing a million miracles unfold that I would otherwise take for granted.

Oh, the emotions ran deep and strong, and in many ways still do.

What did you experience as awareness dawned and the unforeseen became a reality?

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.

"Jack"

We'll call him, "Jack." The little fellow that has captured my daughter's attention.

With a mild-moderate speech delay, our little one is not a gal of many words. Short and sweet is best, in her books :). However, even after a morning at preschool, I never fail to ask her how her day was, what things she took interest in, what the kids were doing.

You'll never know what'll come out, some day!

One particular lunch time, after a morning at preschool, I was trying to encourage her to say, "I love you." Three simple words. For those who are familiar with language delays and challenges, three words in a row is a lot! However, these particular three are delightful and encouraging, and when we hear them it'll be music to my ears!

Anyway, I was encouraging her to repeat after me.
"I. Love. You."
Smile. "Jack."
Jack!? JACK!!? Yes, I've heard this name before. He's a sweet-hearted little fellow who likes to play cars (the one-on-one worker has informed me). He's gentle and inclusive and was delighted one morning when he heard our sweet little girl say his name.
"Do you love Jack?" I ask, in a sing-song kinda voice!
"Mine." More smiles.
"Is Jack your friend?" The grin she gave was enormous. Friendship, in all it's shapes and sorts, is a beautiful thing. My heart soared.

Often often often, we pray for the friendships our children will have. Special people to enjoy life with, to swap secrets and stories, to have fun (but stay outta trouble!!!). However, for our Sweet K, I also ask that there is always someone in her corner who is willing to take life at her pace. A little slower, a little sweeter. It has blessed me time and again to see God honor that request. I know that there will likely be struggles ahead, but so far, she has always had someone who was willing to play at a level that she is comfortable with.

Evidently, Jack is one of those fine folks!! So he has a special place in our hearts, indeed!!

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!