Sunday, April 23, 2017, I had the honor of keynoting the annual Charles Tillman Foundation’s TendHER Heart Luncheon. This spring 250 mothers of critically and chronically ill children attended a special brunch, which honored them for the sacrifices they make in caring for their ill child. The brunch provided these women with the opportunity to “take a minute” for themselves and enjoy each other’s company and support.
Here are my words from the luncheon.
We all have a story.
A story that started with a dream.
A dream of a baby.
For some of us, journey to baby has been long and difficult.
Full of struggles, heartbreak, miscarriages, and waiting.
For others of us, the journey to baby was the easy part.
But one day, we found out we were having a baby.
Months of waiting, hoping, nesting.
Some of us, years of paperwork, court dates, home visits, and birth mothers.
And then, one random Tuesday, we held our baby.
Could anything be more beautiful?
For some, this is where our plans changed, robbing us of our dreams.
Days measured in heart beats and breaths, ounces and inches.
Maybe the first time you held her you knew the journey ahead.
Maybe the first time you held him you had no clue.
But we all remember the first time.
Sleep deprived, but we remember.
Love was birthed through us, within us.
We became a mother.
And mamas—I see you.
No matter the beginning, our story all has one.
A beginning, that is.
And we all had dreams of the future.
Maybe dreams of walking our daughter down the aisle.
Watching our son play sports.
Some of us will still have that-but we will be grateful in new ways.
Some of us had it and it was taken away.
Others of us buried those dreams on diagnosis day.
Life —doesn’t always go according to our plan.
We watch them grow.
Some of us still completely unaware.
Some of us already years into a different script.
We begin filling our photo albums and Facebooks with pictures.
But whenever we heard the words,
we remember where we were when we heard them.
The first time we here it, it sounds like, “supercalifragilisticexpialidocious.”
A word that would change our life-
but most certainly didn’t cause us to celebrate.
Some of us blame ourselves.
Some of us blame someone else.
A few of us blame God.
Others of us wish we had someone to blame.
The woman on your right? It took her child’s diagnosis months or years to name.
For the woman on your left, it may never go away.
For me, it’s Mucopolysaccharidosis.
For me, it is genetic, terminal, and has no treatment or cure.
For me, it is a word that will steal my son.
For me, it is a word that will steal my daughter, too.
We all grieve.
Grieve what we wanted for her, for him.
We grieve what could have been.
We grieve what is.
We grieve what will be.
Of course God gave us more than we can handle.
Who was made ready for this?
We feel lost, overwhelmed, scared, and numb.
Of course we will see the silver lining, we will rise, but right now, we grieve.
It is here in the ashes we decide who God is.
And what we decide, changes everything.
It is here we surrender.
We pray with groans, with yells, and with questions.
It is here we begin to question God’s character.
“God if you are good, why? This doesn’t feel good.”
And then, one Tuesday we get up.
We begin, we are not sure how, but we start.
Moment by moment navigating our new normal.
One foot in front of the other.
We ask questions.
We become advocates, nurses, doctors, educators, therapists, fundraisers, public speakers, event planners, case managers, chauffeurs, and dragon moms.
We fight for IEP minutes, for more tests, for second opinions, and more ideas.
We think outside the box.
We go to doctor appointments.
Oh! The doctor appointments.
“No, my address hasn’t changed.
Yes, my phone number is still the same.
B-O-Y-C-E, Jayden 7.25.06
No, he doesn’t have allergies
Yes, I look familiar-we’ve come here for the last eight years.
Yes, he has a sister with it too.
Two sisters, actually.
But the one you are referring to?
No, they are not twins.
No I don’t want to take a seat, but I have no choice.”
So I wait.
We learn where all the bathrooms are.
Where to park, and what to pack.
Amateurs eat at the cafeteria.
And we find out real quick where the Starbucks coffee is.
We find ourselves doing things we never thought we could or would,
and we feel so alone.
Does anyone see me?
Oh mamas, I see you.
A village begins to form.
People begin to show.
Lots of people.
People that we never thought or never knew.
And a sting, from the ones we thought would, that don’t.
There are always people watching.
We know we can’t hoard our baby’s light.
They are here for a reason.
So we go.
The world needs to see her.
Our village needs to hold his hand.
Sharing life becomes a dual blessing for those special people that enter in.
Our story is too important to keep to ourselves.
Without even trying, people notice our strength.
That light in us, shining.
But we just call it Tuesday.
Because we know
it is by the grace of God we are standing.
We have received the dirtiest comments.
We have given the toughest glares.
We have endured the stares.
“No, he’s not the special needs kid, he has a name.”
“No, this is not like the time your dog had surgery.”
“I know. I don’t know how I do it either, but you can, and you would.”
Somedays, it’s easier to hide.
But it’s in these moments, we are given a choice.
Bitter, or better.
A choice to show up anyway.
A choice to be an ambassador of grace or hate.
And grace, is always the better choice.
We join the club we never knew existed.
A membership we never wanted.
A club that doesn’t talk about the weather,
but can forecast our hearts better than our childhood best friend.
A club we soon realize, doesn’t just contain a similar diagnosis,
but contains some of our deepest friendships.
Where we all lay our burdens, our stress, our worry down
and circle up around it.
We lift our arms to hold one another as we acknowledge what is decaying at our feet.
We don’t compare.
We don’t try to one up one another’s story.
Pain? It isn’t a competition here.
We just watch it decompose and turn into our fuel.
“I see you,” we say one another.
We grieve some more.
But we have also been here before.
We know how to rise.
And we know waiting always comes before the rising.
Normal becomes a setting on our dryer.
And time becomes something we measure by moments instead of milestones.
We wish things would be different.
Then again, we don’t.
We learn there is no way we would be who we are without this.
“If we could just have the beauty without our child suffering,” we ask.
Our babies teach us.
With childlike faith, we find ourselves learning more at a bedside than we would on a playground.
More on our knees than on the bleachers.
Our dreams start becoming more about character than ability.
New normals become Tuesdays.
Fundraising and foundations, advocacy and awareness.
We get assigned a color.
We buy the ribbons, we wear the t-shirts, we make the Caring Bridge page.
We shake hands, kiss babies, and give our speeches.
Then we pack up the tickets, the programs, and the purple, and head back to Tuesday.
But in the quiet, we wrestle.
Everyone else gets to take off their t-shirt, but us.
It’s our baby’s face on the can. It’s our life.
But then the rising.
We exchange jealously for gratitude.
Keeping up with the Joneses? It even happens here, in Holland.
Do you see my baby?
Do you see the beauty and the pain, all tangled together in our story?
Do you see…. me?
Sweet mamas, I see you.
And then in the midst of it all, we see her.
We see him.
Our baby’s eyes.
We hear a laugh and it’s as if time stops.
It’s as if all the pain, all the sleepless nights, all the caregiving, made this moment worth it.
We hesitate to even think, we wouldn’t change our journey at all.
And then, there’s Tuesday.
A bad test result. A missed milestone. A hospitalization.
And we want to change it all.
We get a bracelet.
The death sentence of hospital admission.
And our routine is no longer controlled by calendar reminders
but by the beep of a monitor.
Mothers and children stacked up floor by floor.
We love our baby,
but we feel tension.
We feel spread so thin
because there’s only one of us.
Because we are also a wife, we have other children that need us at home.
Oh, how do we begin to navigate the impact this has on our anything but typical children?
Because this journey doesn’t exist in a vacuum.
We have sisters that need us.
Friends that need us.
Co-workers that need us.
And we need them, too.
We are just human.
We are creative, educated, full of passion and talent.
And we are
We lose our patience with ourselves, our children, their siblings, and the very people that are trying to help. And somehow, in the midst of all of this, we still find time to worry about our weight, the adult acne we still get, what people think about us, and what the Kardashians are wearing on Instagram.
We are just human.
We sacrifice so much
and at times it feels like we are dying inside.
And in the same moment, it feels like we’ve been given the greatest gift.
Did I mention dad?
How we divide and conquer?
Hoping this won’t divide and conquer us.
Some of us still find time to fight with our husbands over things that don’t matter.
Because we need to talk about anything else but the things that do.
And then on some random Tuesday, just as our ships pass in the wind,
we are gently reminded he is human, just like us.
The only one who gets it, just like us.
The only one who loves our baby, just like us.
It is here we realize, there is no one else we’d want to do this with, but him.
Others of us,
Dad’s on a different page, maybe a different book.
And we wonder if we have it in us to try.
Perhaps, it was too much and he left.
I am so sorry he left.
I see you.
I see you, mama.
Not even giving yourself a moment to breathe.
In fear if you stop, for just one moment,
you may shatter into pieces that will never fit together.
Mama, you can break.
You have a Heavenly Father waiting to put the pieces back together.
And to my mamas,
who refer to their babies in past tense,
I see you.
I weep with you.
I will be you soon.
I see you through the cards and casseroles, the sea and the fog,
being tossed about haphazardly through your Tuesdays.
Air being sucked out of you when you least expect it,
the guilt you may feel the first time you laugh.
The emptiness that just seems to settle that can never be filled.
We never get over our baby, our grief.
Just more Tuesdays.
And mamas, we rise.
We always rise.
And there’s the hidden voice, the voice we call fear.
The one we all keep buried.
The one too dark, too destructive to even whisper.
The one that can’t be trusted.
It whispers, “you can’t do this.”
“Run. Leave. Give up.”
“Things would be easier if your baby was gone.”
“You will never be good enough.”
“You are so alone.”
But that voice? It’s a liar.
Because love and light and laughter always win.
Because love and light and laughter always shine best though brokenness.
Moment by moment, we all come to a place in our story where we choose.
In this moment,
will I be bitter or better?
will I sink or swim?
will I give up or show up?
will I survive or thrive?
And although this seems it would be all consuming,
We still laugh.
We still smile.
This doesn’t rob of us of joy.
Our story defines joy.
We appreciate moments most people miss.
We are not numb.
We are alive.
It’s as if our lives go from living in black and white to full color.
Now we are experts.
We have studied our baby from the moment we knew her.
We have a front row seat to heaven on Earth.
We know goodness.
We see the best of people.
We have seen the most beautiful things life has to offer.
Because pain and suffering create the best conditions for beautiful things to grow.
What we doubted in ourselves, we realize we have found.
And what we find, is what our children have been showing us all along.
Beauty and strength.
Courage and resilience.
Patience and perspective.
Generosity and compassion.
We are proud, mamas.
Proud of our children.
Proud of ourselves.
Proud of our story.
We had a dream.
A little one.
What we got instead is a gift.
A better plan.
A treasure far more beautiful than we dreamt.
We are forever changed.
Broken open. Surrendered. Free.
We love hard.
That is what grief is.
We acknowledge there will always be ashes,
but we also know it is here, we rise.
We always rise.
We are mothers.
It’s who we are.
It’s what we do.
Are you a mother of a child with special needs?
More Than a Label is a community of mother’s seeking Jesus in the midst of their Plan B. We share resources and prayer requests, do online Bible studies, and encourage one another to keep our eyes on Jesus. Join the conversation today!
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