A Million Things – Jess Johnson {special needs}

{New here?  Today begins a series on Special Needs with guest bloggers sharing their hearts and journeys.  We do things like this around here.  It’s good stuff.}

Jess is one of those internet friends I’ve made over the years.

It sounds creepy and totally dorky, but it’s totally true that you can connect with someone through social media.

Jess is my kind of people.  I love her heart.

And after reading her submission, I adore her story, her honesty and her faith.

I know you will too.

* * * *

If you are a follower of Life Rearranged, you are one who loves hilarious, sassy blogs with heart.

My favorite kind of blog to read. My favorite kind of person. I think we will be friends already.

So… hi, it’s really nice to meet you!

I first encountered Jeannett’s site about a year ago, soon after I started my own blog.

I love all that she does here. It overwhelms me on a regular basis.

She allows us to be a part of something so much greater than ourselves.

To take part in all that God is doing through His people. For His people.

I am honored and excited to be a part of her current series.

A series about being the mama to a child with special needs.

Our little girl, Ashlyn is deaf.

She wasn’t born deaf.

She passed her newborn hearing screening.

Met all milestones as she grew.

Up until age 18 months.

She was still saying only a handful of basic words.

Mama. Elmo. Up. All the important ones.

We attributed her limited vocabulary to being the younger sister.

Hearing loss never crossed our minds.

Our pediatrician suggested speech therapy.

Before our first session, she went for a routine hearing screening.

And she failed it.

That’s a day I’ll not soon forget.

Dave wasn’t there.

It was routine. No need. I don’t even think I told him we were going.

The audiologist’s preliminary diagnosis was a severe to profound loss in her right ear.

And a moderate to severe loss in her left.

He checked for fluid, the leading cause of hearing loss in infants.

I prayed for fluid. There was none.

He tried to comfort me.

Referred us to a specialist.

Threw hearing aid pamphlets in my lap.

I took a quick glance.

They were big. And awkward. And ugly.

And my little girl was so pretty.

“They make pink ones,” he said.

That didn’t help.

I knew they would bring about looks and stares and comments and questions from others.

And then I thought about junior high.

Then I was thankful that her dark, thick curls would cover them.

Then I was sick to my stomach.

We left the office.

I remember him calling her name as we walked out the door, with a file folder over his mouth.

Checking for a response.

She looked at him.

We were all so puzzled.

Normal birth weight. Full-term. No history of hearing loss in our family.

On the drive home, I began to mentally catalog her first 2 years.

Every sound overexposure. Even in utero.

Every fall.

Every accidental smack in the head from her sister.

I was overwhelmed. And I felt guilty.

I was looking to place blame.

I wish this wasn’t my initial reaction.

I wish I had been praying on that drive home.

I wish I had run straight to Scripture.

But I didn’t.

I doubted God. I questioned God.

I resented His plan for our family.

I hated His plan for our daughter.

Additional testing, MRI and CT scans followed.

She was diagnosed with Enlarged Vestibular Aqueduct Syndrome.

Kids with EVAS are born with normal hearing that declines over time.

Most don’t begin to lose their hearing until age six or seven.

For Ashlyn, we think the process started at about 15-18 months.

I remember her ENT explaining that it was congenital.

And defining that word for us even though we knew what it meant.

“She was born with it.”

SHE WAS BORN WITH IT.

His words hit me like bricks.

The Lord knit her in my womb.

And for some reason he knit those little tubes in her ears a little larger than average.

And I don’t know why.

But I DO know that He does not make mistakes.

His Word and His promises are true.

He is at work in her little life. He is at work in our lives.

He is at work in her hearing loss.

His strength is made perfect in our weakness.

Shortly after her diagnosis, we attended a conference and heard the most timely sermon on God’s sovereignty.

One I will never, ever forget. One God brings to mind each time I face difficulty.

The gist of John Piper’s message was this:

“When God is doing one thing, He is doing a million things.”

So true, right?

God did one thing.

He gave us a precious little girl with special needs.

But he is doing a million things.

That teeny, tiny mustard seed faith I had in the car ride home that day?

I have grown. Tremendously.

God has used this experience in my life to draw me closer to Himself.

Not to say there aren’t hard days.

Doubting days.

Worrying-about-junior-high days.

But even my worst days are different days.

Better days. More faithful days.

Those hearing aids that I dreaded?

They make life easier for her.

They are so much a part of her.

I can’t imagine life without them.

They are cute. And pink. And sparkly.

I’m ashamed that I was ever ashamed of them.

She is just as beautiful with them, if not more.

The Lord has been at work in those around her.

Our loving family and friends.

So patient with us as we make and change decisions on her method of treatment and learning.

Ready to tackle sign language courses.

Going away to college and majoring in Communication Disorders.

Researching hearing aid and cochlear implant options with us.

Our sweet church plant has incorporated sign language into morning worship.

And they are mindful of certain limits associated with her speech delay. And so patient with her.

So loving towards her. In prayer for her. For us.

We’ve been able to come along side other parents who have received news like ours.

News that takes them on an unexpected journey.

And offer support. And prayer. And share our hope in Christ.

We now know what it means to trust Him fully. And wholly.

Despite our earthly circumstances.

And God knew all of this.

At her conception. And as those tubes were forming.

On September 14, she will be undergoing cochlear implant surgery on her right ear.

We are excited and anxious and thrilled to see how God will continue to use her.

How He will use something that was initially so devastating to bring glory to Himself.

And isn’t that what God does best?

I think of His Son on the cross.

Nothing more devastating.

Nothing more glorious.

Be encouraged, parents of special needs children.

God is good. God is working.

Be encouraging, friends and family of a special needs child.

Come along side them. Support them. Love them.

Remind them that God is good. God is working.

Look for the million things that God is doing.

And look in the unexpected places.

Like here.

Would you be willing to donate?

Even just a small amount?

You are not reading this by mistake.

$59.50 buys a wheelchair for a child in need.

FIFTY. NINE. DOLLARS.

The cost of one meal out for our family.

Change a child for a lifetime.

Be a part of the million things He is doing.

* * * *

That was amazing wasn’t it?

Told you.

In conjunction with each series, we also host a fundraiser…in this case, it is for the Free Wheelchair Mission.

Please consider giving.

$1.

Or more.

But truly.

$1 from each person who visits this blog…it’s way too early for math, but I know that we would provide dozens of wheelchairs to sweet souls around the globe.

A single buck.

Do it.

It’s a fabulous way to start your Monday.

• Bio
• Twitter
• Facebook
• Latest Posts

jeannett

I'm a mom to four. A wife to one. I believe in story. I love telling you about mine and would love to hear yours. There's really no sense in wasting our suffering and not sharing in each other's joy. We're all in this together...even if it doesn't always feel like it.

@jeannettg

Follow @jeannettg

jeannett

Latest posts by jeannett (see all)

• Dirt in a Jar, Laundry Scientists, and Clean Water - October 20, 2015
• Because Cake. - October 11, 2015
• How to design a luxury bathroom for less - August 12, 2015