Born @ 27 weeks
2lbs 7oz

Sunday, April 26, 2015

To The Mom Crying At Swim Lessons

To the Mom Crying at Swim Lessons:

And on the ski slope...

And during parent/teacher conferences...

And when your son pumps his legs on the swing...

To the Mom over-exuberantly waving, blowing kisses and giving silent affirmation through a thumbs up each time her kiddo turns toward her...

I get it. I know you feel lucky.
I know because that's me.

Thanks to five simple words.
You see, a few years ago, someone tried to deplete us of hope for our child and future.

This very educated and respected doctor showed us an image of our son's brain and said these five words: Your son 'may not walk or talk'.

Although asking her to repeat those five words several times, they seemed to drip slowly, like a poison, from her lips.

And then they came again.
And again.
And again.

The blows seemed almost too much to bare, though they seemed to flow so effortlessly, without caution or remorse from her tongue.

She was a Neurologist after all. Knowing her stature and accreditations, she seemed omniscient.

I glanced around at the decorated walls and suddenly felt very small. She not only knew things about our son's brain that I couldn't begin to comprehend, she now knew his future - our future. As she looked into the Richter's crystal ball, she took something with her from all of us that single moment: our hope.

Sometimes I wonder if Dr. H knows her power - the power she has at the moment of diagnosis. Does she know that the words she is delivering will shape a family, mold their future? Does she pause to consider she is about to say can make or break a marriage? A sibling's fate? Do the Dr Hs of this world lie awake at night reviewing the dreams they may have crushed that day? Do they picture the moment the Mom calls their spouse and tries to recall (verbatim) what hand they have just been dealt?

I realize Dr. Hs are exceptionaly skilled and wildly calculated decoders. Ultimately, they have chosen their specialities to improve the lives of families like mine and change science as we know it. 

But the delivery. 
Sheesh. The delivery. 

They are Neuros after all, which basically puts them at the top of the Medical Food Chain. (Personally, I'd like to be a fly on the 'Wall of Competitiveness' between the brain and heart guys....)

While the Dr. Hs are absolute about what they know clinically and share it so matter-of-factly: "See this, Ms. Richter." As we stare blankly at an MRI scan,  "This is all white matter in your son's brain. This matter is dead. Brain matter does not rejuvenate."

What about what happens outside of the textbook? Isn't why we are sitting in this neurology room today because of a birth that wasn't textbook?

I composed myself in her room, that day. I remember looking at my cooing, beautiful baby (oblivious to the machine he was tethered to), and not wanting to believe her words.

How dare she! 
What does she know about his future?

I fought back the tears, to fake being a 'strong Mom' - one that has the capacity to become a special needs mom in that moment - with those five words.

It was at home later, when I found myself sitting at the end of our dining room table, head buried in my hands. The only other sound to be heard over the screaming whitenoise-litered-baby monitor were the sobs of my husband in the next room.

Those five words..That night, my husband and I 'mourned' the life we had dreamed of as a family. 

I think that is okay. 
I can't be sure.

But I think it's okay to think of your child and wonder what challenges he/she will face, to think of their siblings and how their life is forever changed. We thought about people making fun of our child - cruel children, ignorant parents . We thought about their hearts hurting and our hearts hurting. We mourned the dreams we had - just moments ago, changed with five words. We felt protective. We felt sad. 

And we cried.
And yelled.
And cried, for what felt like days.

For some reason that night - regardless of how empty and shallow it sounds - I kept thinking, "We will never have a family ski trip." (I know. I'm ashamed to type it. But it's true. I never spoke it allowed, but for some reason it would pop up again and again throughout the course of this particular night. I knew it was ridiculous and not important, but I it just kept resurfacing in the blank spaces in my mind).

While I had never grown up skiing with my family out west, Michael is a tremendous snow boarder and it is something he and I have loved together. We often talked about taking our kids out west for Spring Break. We even had traveled and talked with a few friends about purchasing something in the mountains to create these traditions with our family.

Extremely petty - at least I'm saying it out loud.

I don't know why that seemed so important that night.

And then it was over - the 'mourning'.

We saw our beautiful babies again remember how far we had come, how different life could be and how blessed we are to even have them!!

And those five words continued to have an impact on our future. I sorely underestimated where and how those words would influence our lives.

With those five words that day, our lives changed forever:

I become a stay-at-home Mom. 
My marriage would be put to the ultimate test.
One of our sons would transform into the most empathetic and protective sibling.
Our son would defy the doctors and write his own story.
Our family would learn alternative ways to 'get down a mountain' - and appreciate them immensely.
Our respect for other challenged families and friends would infinitely grow. 
Our dreams would become rich with appreciation and less about accomplishments.
Our lives would shaped into better stewards to our community.
Granted, I will never forgive the delivery of those five words.  I would never wish to rob someone of hope for their child or for their family. For so many, that may be all they have.Today, I am eternally grateful to be sitting poolside and see my son frantically kicking, just barely making it a few feet. He is working 100x harder than the sweet kiddo beside him. And when I'm the Mom on my feet, cheering, pumping fists and tears streaming down my face in each swim class, I can thank the Dr Hs for instilling a drive in our family...

To the Mom crying at swim lessons, I applaud you and for being there, no matter the capacity and challenges you may still be overcoming! And I thank God for the Hope and the mighty families that don't lose it.


My favorite 4 year old

Hot chocolate. That makes a good ski day.

Cowboy Shaw, "Easter Bunny brought me a lasso and spurs. I'm a lawman."

Family Chair Lift! :) :) :) :) :) :) :) :) :) :) 

From top to bottom (with a little carrying) Nevertheless, he/we made it!


1 comment:

Bhavna Khanna said...

I love your writing candace, it's beautiful and raw and full of emotion and gets me every time. Thank you, you remind me about gratitude.