This post has been in my draft box for about a year. I write it. Rewrite it. Then delete it again. There are no words that can help you. No words can heal you; not today. But here's what my heart wants to tell you anyway:
You, sweet friend, are thought of everyday. You're in my thoughts. In my memories. And in my love. I think of you.
I think of you when I remember this day.
I think of you when I look at my sweet son.
And I think of you when I look towards the future.
But today, more than anything, I love you. I love you beyond your wildest dreams. I love you because of the beauty that will come from you.
Today, two years ago, I was you.
The tears you are crying, they were my tears.
The confusion you feel, I felt it.
And the guilt. The guilt you hold in the depths of your heart, sweet mama, I know that guilt.
Was it something I did? Could I have done anything differently? These questions cut deep. They're ugly.
But the truth is simple: my son is exactly who he is supposed to be - and yours will be, too.
Hearing the words: Your son has spina bifida, it's life changing.
You've heard the doctors talk a lot about folic acid. You've heard the statistics. You've been given your options.
Dear friend, now hear me. Hear the words that I hold close to my heart.
I know the journey you are just now embarking on, and it's scary. It's hard. But mama, please know, it is so worth it.
These are some dark days - these early days when everything you've been dreaming of seems to be turned upside down.
But know, you are about to discover that your world, even upside down, is beautiful.
You'll put on your research goggles. Your life maps will have to be revised. But the journey, this adventure through parenting, is worth the effort, because that precious life inside of you will amaze you every step of the way.
As my 19 month old tugs on my pants leg, signing for milk and asking for cuddles from his wheelchair, I think of you. I think of how scared you must be of wheelchairs - because that was me.
They're unknown. They come with a stigma.
But what if I tell you, they come with discovery, and learning, and fun? What if I tell you, they are a conversation starter, a friendship maker, a 'cool factor' on the playground?
Our son has learned more, progressed more, laughed more in the past few months since he learned to operate his wheelchair. He is happy. He plays. He is a normal little boy who happens to have spina bifida.
Words can't help you today, but one thing I want you to remember. When the the clouds start to dissipate and the sun starts to shine again, remember these words.
Life doesn't end with spina bifida, a new one is just beginning.
A hard. Crazy. Emotional. Beautiful. Loving. Unique. Worth it. Life.
It's yours to enjoy. So enjoy it, because our kids, just like any others, are incredible.
Today has been one of the mundane, get the housework done, donate a few things here, throw away a few things there.
Lunch from leftovers.
Naps for the kids.
A little whining. A little laughing. A whole lot of contentment.
Like I said, nothing special.
Except today. Today is life changing for us.
Two years ago, which is hard for me to truly believe, was a fundamentally life changing day for, with prayers and thankfulness, our now family of four.
You see, two years ago, we found out first hand how incredibly fragile life is. We found out that even when you take every precaution in the world, do all of the research, and pray for healthy, some things are just out of our hands.
Two years ago, we were told we were having a son - and he would not live.
There are no flowery words to describe it. No dressing it up or wrapping it in pretty packaging.
It was excruciating. It was terrifying. It was all consuming to the point that breathing literally hurt.
In midst of the storm, it was ugly.
But how beautiful the aftermath is.
Today, there have been things that weren't there on this day two years ago.
There have been laughs!
There has been joy.
There has been sibling love and playfulness.
Today, we are thankful that hugs can help our tears and that kisses can cure our hurt.
This day two years ago changed our perspective. Our perspective on many things, but mainly our perspective on joy.
Although the memories are still vivid and the pain can still be felt - we find beauty in them because we know how much joy we could have missed.
Tonight, in honor of Elam, we celebrated with our favorite local pizza and a scoop of ice cream from the fudge shop downtown. As the sun was setting and Elam was pointing out every bird that flew near, I felt peace.
Peace, perfect, whole.
This is where I'm supposed be. This is what I'm supposed to be doing.
Elam's mom. Ellery's mom. Justin's wife.
Oh the joy that we would have missed.
We are thankful for the hard days because it is only through them that we find unmistakable joy
As this year comes to a close, we look back and smile. We smile, not because it wasn't hard, not because we never became discontent, but because we have seen our lives transformed into ones of hope and love and joy in the small things.
Our year was full of learning opportunities. We learned to adjust to the unexpected. We've learned to look past the dreariness of an overcast sky and see beauty in the wholeness. And we have learned that our call to love extends past ourselves and our family.
From start to finish, 2014 was a bumpy road. We have seen our share of disappointments. We have found ourselves throwing pity parties and eating a pint of ice cream while wearing sweat pants (okay, maybe that one was just me). But from this side of the struggle, I can see how the pain changes our outlook, humbles our hearts, and teaches us to look beyond our current situation to see that blessings are not always wrapped up in pretty packaging.
However, please do not think I mean blessings are always messy or that ours have all been that way. I do not believe that for a minute. This has been a beautiful year of perfectly timed friendships, wonderful new beginnings, and countless answered prayers for wisdom when nothing else would do.
2014's beauty didn't come from monetary value, it came from quiet humblings of our hearts - lessons on love and purposefully choosing to see the good.
Life with a three year old keeps us on our toes. Life with our 18 month old keeps us grateful. And life with each other just keeps us happy.
Three and a half years ago, when we moved to McComb,
Mississippi from my home state of South Carolina - away from family and all of
the friends I had ever known - I cried. With my hands on the steering wheel and
my eyes focused on the rearview mirror, I cried out because of fear. Because of
the unknown. And because I never thought I’d find friends like you.
During our short time here, in the little bungalow on
Virginia Avenue, Justin and I have changed a lot. We’ve grown up a lot. Our
comfort zones have been stretched, and our trust in God has never been more
necessary. The tests we have faced have brought us such special memories: memories
that you’ve each helped shape.
We have welcomed many changes here, and with each transition
came friends to see us through to the other side. From figuring out a new town,
to becoming new parents, then on the roller coaster ride of our second child – and his spina bifida – you guys have hugged
and prayed and laughed with us. You have cried and shown more love than we are
deserving of. For that, we will be forever grateful, and forever indebted. You
have been exactly what we needed through each new stage.
Many of you have lent your homes at meal times, baby clothes
for our sweet ones, and your hands when our own simply weren’t enough. You have
lent us your hearts, and you have touched ours in a forever-changed kind of
You have loved us. You have loved our babies. The love that we share as a family was
nurtured with the love that you have shown to us. We are joyful because of your
friendship, and we are thankful because of your kindness.
As our time in Mississippi comes to a close - as we prepare
for more transitions and more of the unknown - we look at what you’ve taught
us. You, our friends, have taught us that great friendships can come from the
unexpected and from the brand new. You have shown us that it doesn’t take blood
to make you family, and it doesn’t take history to make best friends.
So, as we head towards the Florida line, my hands will be on
the steering wheel, and my eyes will be focused ahead. Not because we won’t
miss your presence, your hospitality, and your generosity, but because you all have
taught us how to face change without fear. You have all played a part in the
special memories we have made here and have helped make this an unforgettable
time in our lives. We are grateful for each and every one of you. From the
bottoms of our hearts: Thank you, for all you’ve done.
'Do not disdain the small. The whole of life - even the hard - is made up of the minute parts, and if I miss the infinitesimal, I miss the whole.' - AnnVoskamp (One Thousand Gifts)
The light speckles the ground, falling through the green leaves and triumphant tree branches, leaving beautiful 'sun puddles', as the toddler calls them, scattered throughout the front yard.
A surprise autumn day has shown up in the middle of summer, and my hair blows gently in the cool, sweet breeze. It's refreshing, and needed.
I am thankful. My pen scratches the paper as I acknowledge my blessings. I hear the etching sound created as my thoughts tumble from my fingertips. It is beautiful, the sound of thankfulness. And it's eye opening.
We are outside this morning and my Ellery is singing along with the birds. She's longing to climb a latter and rescue one of them from his perch on the powerline above us. She's wearing rainbow pants that she picked out herself. They're on inside out and backwards, but she did it. And she's proud.
"You're impressed, mom!" She tells me.
She has heart. And spunk. And independence.
I am thankful.
I watch it all from the rocking chair on our front porch. From the corner of my eye I see the porch swing swaying back and forth as the wind chime, played by the wind, creates a melody for it to dance to.
The swing is light blue, and it's my favorite thing about our porch. It is not exceedingly comfortable, and I do not use it all of them time - but it is special.
It has a cut out of a tulip resting in the center of its back. It was created and uniquely designed for me, with love, by the one man who holds my forever in his heart.
For this, I am thankful, always. Even when I fail to acknowledge it.
I am thankful for this love. This forever. This one man and his heart.
I have reminders all over my house of the love that radiates from the center of it all. Reminders of God's love for me.
This love shines through the light in the eyes of my children.
In the way my husband adores me.
And the way nature sings us a beautiful song, with sun puddles and sweet chirping.
But this love, the irreplaceable, glorious, undeserving love shines the brightest when I take the time to acknowledge it. To acknowledge the big, but maybe more importantly, acknowledge the easily overlooked, the everyday and routine.
One day, a few months ago, I was at Ochsner, riding the elevator after one of Elam's many doctor appointments. It was raining and we had just heard some discouraging news.
Elam was riding in the Ergo, snuggled closely to my chest, I kissed his forehead as the elevator descended downward.
From over my shoulder an old man asked how old 'the cute little boy' was. And when I answered his first question, he then took the opportunity to ask about the braces Elam had on his feet.
With 7 more floors to go, I mentioned he had spina bifida, clubbed feet, and lack of movement in his legs.
I smiled, kissed Elam again, and reassured the stranger, "We couldnt possibly love him any more than we do, and we're learning life doesn't end with Spina bifida."
As I was finishing my story, the elevator came to a stop.
When it opened, the old man nodded, again mentioning Elam's cuteness as he tipped his hat in farewell.
After he exited the elevator, I then noticed stares from a women to my right. Stares I did not understand. She was with her teenage daughter. She hurried out, with her hand on the small of her daughter's back, encouraging her to move a little faster.
She stopped just outside the elevator, making sure to keep me within earshot.
Then she said,
'See, honey. That is why you take your prenatals, so kids like that don't happen. People like her shouldn't be allowed to have kids if they can't even take their vitamins.'
I'll let you think about that for a second.
'...so kids like [Elam] don't happen.'
[ I shouldn't be allowed to have children.]
To this day, my heart hurts when I tell this story. It hurts for Elam, it hurts for me, and it really hurts for people who judge without knowing someone's details.
This woman judged me on something she knew nothing about. She determined I was unfit for motherhood because of the physical disabilities of my child.
I challenge you to realize we all have our details that others may not know about.
It is easy to judge when you think it is something that couldn't happen to you.
It is easy to judge when you think you take every precaution to 'do everything right'.
Sometimes, it is just easy to judge.
But we need to stop.
We need to stop belittling others in this journey that isn't always easy.
We need to love. Love despite mistakes, love because of mistakes, love because none of us are perfect.
I reach for the milk in the refrigerated section of the grocery store. I look down, kiss Elam on the forehead as I turn to place the milk in the cart.
Elam is happy to be riding chest to chest in the Ergo, smiling and babbling at me. He's wearing a jumper, with his legs completely exposed to the air. It is 80 degrees outside and humid here in Mississippi, so he's not wearing socks.
As I turn the shopping cart towards the produce section, checking my list to see what else I need, I hear, "Isn't your baby cold? He should be wearing socks! Shame on you!"
Looking over my shoulder, not believing what my ears just heard, I see an older lady still semi-shaking her finger at me.
My immediate response was to smile and say, "No, He's fine and happy, thanks though."
She scoffs and walks away.
I stand there for a couple of seconds, looking around to see if anyone else witnessed this.
I proceeded to get the rest of my things, and head home, but couldn't shake what just happened.
I am usually pretty good at letting unwanted advice go in one ear and out the other. I am experienced enough as a mother to know that the decisions I make are made to benefit my family in the best way possible.
This shame placed on me because someone doesn't know our story, doesn't know my reasoning, really bothered me.
What this lady doesn't know is: Elam spends most days in braces. He sleeps in braces. Our morning out of the house was a good opportunity to let his feet air out.
What this lady doesn't know is: we avoid wearing braces to the grocery store to avoid unwanted looks and questions about Elam's feet.
What this lady doesn't know is: her comment hurt more than she will ever know. It brought up the fear in my heart that I try to suppress about Elam's future. About judgemental eyes, not caring about the whole story and picture. About the stigma that will come along with Elam's handicap.
This journey with Elam has given me a perspective that I failed to have before him. A perspective that keeps me trying my best to avoid judging others.
You see, we all have our stories. We all have our problems and reasons. Although our hardships may look different, we are all just trying to make it.
So, before you judge me because of my sockless child, please try to see my love for him, and how it dictates my every action.
When you see my son, try not to judge him because he was born with a hole in his back and your body happens to work better than his. Instead, see his smile and the beautiful light that shines from it.
And when I see you, I will look for the good, too. I will try and look past your bad attitude, giving you the benefit of the doubt, assuming life isn't going quite you expected it to today.
This is important.
Not just to me, not just for Elam, but for us all.
We all need grace to be an action.
Maybe we need our advice to be rationed to 'when asked for only.' Remembering that we never know when our piece of advice just might dig deeper than we could ever expect it to.
Let's remember not to stare at someone who looks different from you - and not judge just because someone acts a little different, too.
Remember there's a story behind it all. God's grace covers us, let our grace cover them.