Saturday, December 10, 2016

Only Jesus

“Jesus, only Jesus.” 

I closed my eyes and smiled as I took in his voice.  Joseph was singing two rows behind us, and I just knew the angels listened through their tears.  His passion, his worship, reached deep into my soul.  Cerebral Palsy claimed control over Joseph’s body, and his words were difficult to understand.  Except for “Jesus”. 
I could hear Jesus. 
Emmy was being shy and not excited about mingling, but she had eyes for Joseph.  She peered over my shoulder and I could see her in my peripheral, smiling and waving, like she’d always known him.  I looked back and saw him smiling and her, and I was filled with such love.
Jesus, only Jesus.

Before Emmy, I think Joseph might have made me uncomfortable.  I didn’t understand his intellect.  I wouldn’t have been able to see his heart.  I didn’t see how strong his parents must be or how much they so obviously adore him.  Before Emmy I didn’t know this immediate bond that is passed on every time a child with special needs is born.  This admiration we, as parents, have for each other.  This mutual defensiveness, this fierce loyalty.  And I wouldn’t have been able to fully appreciate Joseph’s song.
Jesus, only Jesus.

I smiled and waved at him.  I caught his mom’s eye, then his dad’s.  They were smiling at Emmy with the same smile I had given their son.  They understood us.  I wanted to talk with them, to soak up the knowledge and wisdom they’ve gained over their years with Joseph.  I wanted to ask them how they deal with stares and questions. I wanted to ask what they do when people point or when kids ask what wrong with him.  How do they handle the fear when he gets sick or questions of what his future holds?  But I didn’t.  Instead I continued listening as Joseph sang.  And I knew the answer. 

There was only One who held my answers.  He’s the same One who gave us perfect treasures to cherish.  He’s the same One who gave us our children to touch the lives next to us and fill a place in our hearts that’s missing from most.  He’s the same One who holds their futures and dispels our fears and wraps us in the simple things, like a beautiful song…
Jesus.  Only Jesus.

Monday, December 5, 2016

To My Fellow Rockin' Mama

I think it will always be easy to go back to that day.  The minutes ticked away relentlessly as Matt and I kept checking the clock.  The girls excitedly looked at us to why it was taking so long.  We had no idea what was behind those doors.  It took only moments for our forevers to change.

I remember the doctor at the door.  I’d never seen him before.  I’ll never forget him now.  We were told the girls would have to stay in the waiting room.  The scheduled sonogram where they would see their sibling for the first time would not take place.  The doctor needed to talk to us in private. 

I remember the hallway seemed so long.  The room seemed so small.  My heart was breaking before I heard the words.  I knew.  We both did.  As the doctor closed the door and asked us to sit down, my world started falling down. There was something wrong.
Trisomy 21.
Down syndrome.
I’m sorry.
The nurse held a box of tissues, but even then I knew I was representing life.  I would Not cry.  This was our baby.  Our priceless child.  Our little girl.

The days ahead were filled with denial, anguish, depression, and fear colliding with trips to the grocery store, birthday parties, and church. 
I remember the tear soaked pillows, the inability to sit up, the desire to disappear, the countless forced smiles.  But what I remember the very most was the loneliness. 
Deep, penetrating, all-consuming loneliness.
How do you go through something so painful without support?  Without one person in your whole world who understands.  Without anyone to talk you through your irrational moments?  Without anyone to tell how much I was going to love her, or how she was going to complete our world?
If only I would have known you then.
My fellow Rockin’ Mamas.  I never could have imagined caring so much for people I’ve never met.  I never could have imagined loving your children so very much - celebrating their accomplishments, praying over their trials.  I love to see their faces on Facebook and watching them as they grow.  My heart breaks when we go through the grief of having to say good-bye.  This is a bond that can’t be described, but can be felt every time in every post.  We are a tribe.  We are family, united by the most precious of souls. 

So, thank you.  And thank you for Down Syndrome Diagnosis Network who brought us together. Because of you, I’ll never have to go through difficult times without support.  Because of you, I’ll never have to go through this life without someone who understands.  Because of you, I’ll always have someone to talk things through, to seek advice, to gain perspective. We will carry on advocating for our babies by showing our society how much they are loved, and how they complete us wholly.  
I can’t wait to follow your children into their futures.  I can’t wait to see those smiles and the videos of their laughter as they become young adults.  I can’t wait to see how many of our babies grow up to marry each other and beat all the odds others have set against them.  Not only have we started out together, but we’re going to continue on to change the world for the benefit of our babies.
And for all of that, I am so incredibly grateful for You.

Tuesday, November 8, 2016

To the Mother at Wal-Mart

We were in the snack aisle when I came across you and your little girl.  She was tearing things off the shelves quicker than you could replace them, and your frustration was growing just as fast.  When you took the items from her hands and told her to stop, she yelled back at you, “No!”.  She ran to your cart then back to you, and I could tell your patience was being stretched. 

I wanted to tell you that I have a little girl about your daughter’s age.  I wanted to tell you that my daughter has Down syndrome and doesn’t walk yet.  If I’m honest, some days I feel like she’ll never walk.  I wanted to tell you that I look forward to the day when she exerts her independence and even runs crazy in the store.  I wanted to tell you, but I started crying.  You left, completely unaware of my tears.  But I had so much to say.

Your momentary trials in the throes of toddlerhood should be cherished.  You know that in another year, your child will go to a sweet little preschool to prepare for kindergarten, while I’m left wondering if I’ll ever put Emmy in school, terrified that a bully could harm her.  Your daughter will go through elementary, middle, and high school with the usual accolades and awards, while I worry that my girl will be the one on the sidelines, always looking on.  Your girl will go to college and meet a nice boy and one day she will place your grandchild in your arms.  And I have to admit that I can’t clearly see the future for my daughter. 

I have beautifully high expectations for Emersyn.  I do believe she will go to college and get married.  I do believe she has more to contribute to society than I can imagine.  She is pure joy, and my life is filled with contentment, laughter, kisses, dancing, and happiness.  She is Never a burden.  She is Always worth it, and she fills our lives with all that had been missing. 

But that doesn’t mean it’s always easy. 

I went home after I saw you and I was rewarded with the tightest hug any itty bitty could give.  I kissed her cheeks, because they are so incredibly squishy, and we played until it was time to nap.  I held her on my lap and then carried her up to her crib.   I kissed her again and put her down, watching her little eyes grow heavy. 

During quiet time, I prayed for too many of her precious friends.  Several have seizures, one’s going through cancer, one’s starting chemo, one’s recovering from heart surgery.  One sweet friend is touching the fingertips of Jesus, while another had taken full grasp of His hand and journeyed home.  Their mamas don't get to hold them free of wires.  They don't get to play on their floors and sleep in their beds.  So much heartache.  So much perspective.

It became obvious at that moment that we have more in common than not.  Every day is a gift.  Every day is a struggle.  Every day is another opportunity to do it right and feel blessed.  Because you are.  Because I am.


If I see you again, I won’t cry.  I will tell you about Emmy and that even though she’s not walking, she’s crawling like a maniac.  And even though she doesn’t pull things off the shelves, she does go for light sockets and anything breakable.  She doesn’t say “No!”, but she has some pretty remarkable tantrums.  And though she doesn’t run the supermarket aisles, she runs circles around our hearts.

Yes, we’re more alike than not, you and I.  And we’re stronger than we feel.

Thursday, September 29, 2016

8 Reasons Why I Overshare

1.  Because it’s my purpose.

A few things happened when our story spread over social media this past summer.  First off, I got pretty sick of myself!  I’m a homeschool mom, Sunday school teacher, and girl’s youth leader.  It’s my sole responsibility to put Christ in the center my life and the lives of those I teach.  The spotlight is hot for a reason - we shouldn't get too comfortable.  However, the most important lesson I learned from that time is that God has given me an amazing purpose in this world.  His plan is so much greater than anything I could have imagined.  The tragic truth is that babies are dying by the thousands every day.  Horrifically, inhumanely, meaninglessly – Dying.  If our story or video speaks to one momma, and saves one life, then of course it was worth it.  It will always be worth it.  So I’ll keep on. 

“For I know the plans I have for you, declares the LORD, plans to prosper you, not to harm you, plans for a hope and a future.”  Jeremiah 29:11

2.  Because I know who cares and who doesn’t. 
This is a fortunate and unfortunate by-product of oversharing.  I’ve been hidden, ridiculed, and deleted, but the funny thing is that I understand.  I do.  If someone isn’t invested in me or my daughter, than I’m sure my crazy amount of pictures and videos can get quite annoying.  The positive side to the hiders and haters is that I know who does love us.  I know our supporters and I know our encouragers.  And YOU, my precious friends, are Loved and Appreciated.  More than you’ll ever know.

“A friend is always loyal, and a brother (or sister) is born to help in time of need.”  Proverbs 17:17

3.  Because her milestones are a big deal. 
Her milestones are huge!  I have lived under these suffocating blanket statements since before her birth.  She’ll never do this, she’ll always do that; her tongue this, her eyes that; she’ll have this; she’ll never have that.  I’ve simply had enough.  By sharing in her milestones and her accomplishments, I’m cutting holes in all those blankets.  Pretty soon there will be nothing left of those statements but a bunch of hot air. 

She can do All things through Christ who gives her strength.  Philippians 4:13

4.  Because someday she’ll understand that I championed for her.

There will be a day when my little girl will look back and see how much her mommy, daddy, and sisters adored her.  She will see how crazy we were about her and how we believed in her from the very beginning.  On that day, she’ll already understand who she is and she will already be confident in our love for her.  But to look back and see that we were always her champions will give her all the more strength and perseverance.

“And let endurance have its perfect result, so that you can be perfect and complete, lacking nothing.”  James 1:4

5.  Because I’m her voice to change perspectives and to inform.
She doesn’t have a voice yet.  When she does, I have no doubt that she’ll use it to change perspectives and inform in her own perfectly beautiful way.  But for now, I’m her voice to show the world anytime she breaks out of an ill-conceived, fragile, or misinformed mold.  Anytime she displays her own personality, her intelligence, her adorableness, I’m going to share it.  The world needs to see that she is unique and perfectly made to fulfill a greater purpose, hand-selected by the God Who created her.

“I knew you before I formed you in your mother’s womb.  Before you were born, I set you apart and appointed you as My prophet to the nations.”  Jeremiah 1:5

6.  Because her accomplishments can inspire. 
Before her diagnosis, I knew absolutely nothing about Down syndrome.  If I did hear anything, it was negative or ugly, filled with low expectations for my child.  Emmy does more at her age than I was given hope for her to do.  I know I’m not the only person out there who has a child who wasn’t give much hope to succeed.  I share because there are no limits with God.  And that’s why I praise Him with every hurdle she jumps, climbs, or even crawls over.  She is His testimony. 

“God is able to do far more than we could ever ask for or imagine.  He does everything by His power that is working in us.”  Ephesians 3:20

7.  Because other mommas need to know that I get it. 
I share because there are countless other mommas out there just like me, and it feels really good to know that there are others out here who understand.  We are not always up.  We face sadness, disappointment, and heartache.  But we are a blessed minority to take every single moment captive and celebrate those little moments, which are never really little.

“Therefore, encourage one another and build each other up, just as you are already doing.” 1 Thessalonians 5:11

8.  Because she’s cute.

Thursday, September 15, 2016

Your Typical Child

He’s by her side…

And it hurts.  No matter how many times I tell myself not to compare, I do.  I’ve watched him all his life, fly past her.  It’s so difficult to admit that sometimes it makes me sad to see him soaring when she’s just finding her wings.  When she was learning to sit, he was walking.  When she finally crawled, he was running.  He was saying ‘mama’, while she was making her first sign.  He reminds me that her future might not be easy, and I struggle to push back the negative thoughts that continue to remind me that this world is not going to always be kind.

But he’s by her side.  

Then I get up the courage to take a peek into the future.  Most of the time that’s very difficult for me, but this time I see them when they’re three years old.  He’s handing her a balloon and they’re bouncing it in the air. He’s holding her hand, and they’re running through the church while the parents are talking after service.  He’s stopping to wait.  She’s giggling, and she runs ahead. They’re singing songs, acting silly.

And he’s by her side.

Then I see them when they’re ten. He meets another child at his school with the same eyes as hers, and he wants to be friends with him because he knows the secret.   The next time he sees his Emmy, he’s excited to share with her about his new friend.  He gives her a hug, because they’ve always been friends, and that will never change.  I see him with his arm around her, proud to make her smile.

And he’s still by her side.

I see them when they're sixteen and he’s defending a boy in his school who’s being bullied.  He tells the others just why that boy deserves to be respected and treated with dignity, because he can’t imagine anyone hurting his Emmy that way.  He can’t wait to see her because somewhere along the way he’s decided that he will protect her and any extension of her.  He gives her a hug, just like he always does, and sits down next to her in church.

Right by her side.

I see them when their grown, and he’s raising his own children to love everyone, no matter the number of chromosomes.  He’s spent his whole life cheering for her and celebrating her victories.  She’s spent her whole life cheering for him and celebrating his victories.  Their friendship won’t just change who they become, it will change others who have the privilege of knowing them.

Because he’s by her side.

Back in this moment, I look in the nursery and it hurts a little less.  He’s playing the drums, and she’s playing the xylophone.  I take notice of the milestones she’s meeting and the similarities they share. They’re smiling, he’s laughing and they're building a bond that melts me.  Because he’s right where he’s supposed to be…

By her side.