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.

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She wasn’t born deaf.

She passed her newborn hearing screening.

Met all milestones as she grew.

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Up until age 18 months.

She was still saying only a handful of basic words.

Mama. Elmo. Up. All the important ones.

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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.

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“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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.
jeannett
jeannett

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Comments

  1. 1

    I have a 4 year old daughter with Down syndrome. Looking forward to reading the posts this week!

  2. 3

    am the co-guardian of a dear single mom firends special needs daughter.. She wasn’t expected to live after birth and is now 23 yrs old and a true loving spitfire of a young lady. My ex’s new baby girl has Down’s Syndrome and her 20 and 17 yr brother’s love her very much. Special Needs only means Special Love and God gives you that when one of his special ones cross your path to become part of your life. — great post.

  3. 5

    amen. thanks for sharing, jess. god is indeed at work on a million things, and i am joining you in finding them.
    love you and your sweet family. what a testimony of clinging to jesus, even when he chooses what we would never. praying for you!

    thanks, jeannett for another powerhouse series. to god be he glory! xo

  4. 7

    Thank you. I just got a new understanding of Romans 8:28. God is at work on a million things, so many of which we don’t understand. Somehow they ALL work together.

  5. 9

    Thank you, Jess! That was so honest.
    I felt every word.
    I also remember feeling exactly the way you did when you said,
    “I resented His plan for our family.
    I hated His plan for our daughter.” when Ella was born.
    It took me a long time to see what God wanted me to see in His plan.
    Love to you and your beautiful family!

  6. 11

    this is beautifully written. my heart screamed yes at many points. i have no doubt that God’s love will be more evident because of you and your beautiful little girl.

  7. 13
    Marilyn Holeman says:

    When my daughter met a young man at a Christian camp who was deaf–and only one person in the camp could communicate with him, it re-directed her life. She started taking ASL (American Sign Language) courses in college. She’s now a missionary in Mexico, living as a dorm mom in a Christian school for deaf children, and using LSM (Mexican Sign Language!) God works in mysterious ways!

  8. 15

    Love this girl. Love this mama. Love the priveledge of being in their lives. Seeing God work in Ashy is a joy, and in her mama and dad is incredible. He is
    Truly working in and through the Johnson’s. Excited to see what He does through this series and those wheelchairs! Thanks for your servant heart Jeannett!

  9. 17

    What an amazing story…wow. she is gorgeous!

  10. 19

    Thank you for sharing your wonderful story. What a beautiful, precious little girl you have! Truly, you are blessed.

  11. 21

    Thank you for allowing me to tell Ashlyn’s story. Love you. Love all that you do here. LOVE LOVE LOVE that you allowed me to be a part in such a huge way.

  12. 22

    Smack smack smack! Your words have hit home with me in such a powerful way. Thanks so much for sharing your story about your beautiful daughter. I will pray for her (and you!) as she undergoes surgery. My almost 5 year old is autistic and, like you, this is NOT what I planned for my little guy, but GOD’S plans for Nolan are far superior to mine. Oh, how these special children are loved by us, but even more so by their Father.

  13. 24

    Completely touched by this.

    And in encouraging parents and family and friends of special needs kids, you also encouraged a special needs kid herself. I am that deaf kid too.

    God absolutely has a plan in this. He wasn’t one bit surprised by any news you received from any doctor, or any of your guesswork in how you could have done anything differently. So thankful that He can bring good out of pain and grief.

    You’re right, she looks beautiful in her hearing-aids and I’m praying for her cochlear implant… God has big things for her!

  14. 26

    So early in this series and already you’ve got me crying!
    My daughter was born with moderate-severe hearing loss – I remember the day we found out for sure. Thankfully for us we had almost three months of wondering/worrying/planning/preparing before that diagnosis. My little girl is three now and about to start preschool – purple sparkly hearing aids and all! I’m thinking of learning sign too… no idea where to start though (other than the alphabet).
    I’ll pray for success for your daughter’s CI! :)

  15. 28

    what a beautiful little lady! my father in law is legally deaf and had a Cochlear Implant about 6 years ago and it really did change his life. he was so surprised to hear new things like the sound of his newspaper page when he turned it and his dog’s tail excitedly thumping on the floor. where he used to miss out on the bulk of conversations, he hears pretty much everything you say to him now. it really is a miraculous thing! good luck to you all as she heads into this phase!

  16. 30

    So touched by your post. I have been working with deaf children and adults as an interpreter for 20 yrs. With so many parents refusing to sign (and doctors telling them not to), it is so wonderful to see parents who meet their deaf child where they are, as visual communicators. I have had a deaf/type 1 diabetic little one in my life for 7 yrs. He has bi-lateral implants and an insulin pump. His gear weighs almost as much as he does, but it doesn’t slow him down! (you can read about his trip to Sea World here: http://little-altars.blogspot.com/2011/07/sea-world-world-of-misadventure.html ). I’m eager to follow your blog and keep up with your sweet family.

  17. 32
    Carrie R. says:

    Loved every single word of this post. Our oldest son was born with a cleft of the soft palate. I’ll never forget being so overwhelmed with questions and information those first few days. That first year was so, so rough. At 5 months he had tubes put in his ears to drain fluid and he was able to truly hear the first time. At 17 months he had his palate repaired and spent a week in the hospital. He’s 4 now and is starting Pre-K in a couple of weeks. Looking back now, I can see how God carried us through it all.
    We questioned a lot why our son was born this way in the beginning, but like you said He makes no mistakes. He forms every child perfectly according to His will and purpose. Thanks for such a great post.

  18. 34

    Jess, your little girl has come along way :) I knew the story, but reading it all over again just opened my eyes to seeing how glorious and gracious our God truly is. I can’t wait to see what the Lord has in store for her in the future. Just picture it, when I get back from college, I won’t be able to get her to stop talking, like I can even do that now. :)
    I’m thankful for God in putting your family in my life. Through everything, God was glorified and your family made sure of it. Thank you for being such an encouragement to me.

  19. 36

    Jess, I have been so blessed to have your family as such a big part of my life for so long! This post gave me a totally different insight into the journey you guys are going through, we have had conversations about it…but hearing it like this showed me a whole lot more. Not only about you, your strength and dependence on the Lord, but about God’s sovereignty (sp?) in all of it. Ashlyn is just another small piece in the puzzle that is contributing to my life and when things are tough and I’m not sure if I’m cut out for this…I think of all the kiddos God has blessed me with and it gives me strength to push through and reminds me of why I am doing this!
    You, Dave and those precious little girls, God is using you in huge ways…and has big plans for that little girl! Love you and look forward to seeing where God takes you guys! :)

  20. 37

    I feel so blessed to know this wonderful little girl :)

  21. 38

    I just found your blog today . I will be sure to come back to it on a regular basis. To the mothers who have Deaf children let me reassure you that whatever dreams you had for your child- they can still do! The only problem might be in VOCALLY singing. But then my hubby can hear perfectly well and can’t sing much either. WE have spent the past 15 years connecting people who are looking for Deaf Ministries. In the process we have met/connected with Deaf who are doing the following
    Bible Translations- on every continent
    pastors
    teachers
    medical professionals
    Choir leaders
    Drama teams
    Writers
    media professionals-video-Tv etc
    artists
    airplane pilots
    you name it and they are doing it. If they have a dream of doing something don’t discourage them because somewhere someone has done it. If looking for something specific we can point you to people who would know people who know people. smile.

  22. 39

    Hi,
    I just discovered Life Rearranged a couple of days ago and I’ve been blown away by the “Special Needs” series. This was such a beautiful post – I cried and thought of my sweet 2-year-old girl and the new little sister due in May, how God ever so lovingly knits them together to be just as He purposed them to be. I love love love what you said about how when God is doing one thing, He is doing a million things. Just beautiful. Before I became a stay-at-home mom, I was an elementary special ed teacher, so this series is so right up my alley! Thank you so much for sharing your sweet words.
    Kat´s last blog post ..switching to wordpress

  23. 40

    Jess, I recently stumbled across your blog through Meg. As I reading your story my eyes filled with tears. My 26 month old daughter was diagnosed with moderate hearing loss in her left ear. She is wearing a pink sparkly hearing aid as we speak. I struggled for weeks on end about what she would look like, would the kids make fun of her. All so shallow. Thank you for the reminder that my daughter was knit this way in my womb. Unlike your daughter she never passed a hearing test in her left ear. I am so thankful for the hearing aid and the possibilty that it provides my daughter to develop normal speech. Thank you so being an inspiration to me. I can’t wait to watch your daughter shine with the cochlear implants.

  24. 41
    Melinda says:

    Jess, how special that God picked you to raise a beautiful deaf girl. Whether she hears or speaks with her implant is not important. The fact that you are raising her to be a spiritually whole and healthy child is what God wants. I pray that God keep you close on this journey. I have been privileged to help start a church for the Deaf in our area (I am an interpreter) and see how God uses the Deaf to teach us “hearies” how to rely on Him.

  25. 42

    The knowledge is extremely unique.
    Full Report´s last blog post ..Full Report

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