Because He Knew…

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I don’t think I’ve shared this story before, but it’s really been on my heart lately, so I guess I’ll start at the beginning…

With both of my children, one hymn became “their song”, and I would sing that song frequently when I was pregnant with them. Tater’s song was Tis So Sweet to Trust in Jesus. I still sing it to her, and it’s still the first song she requests when I put her to bed.

When I was pregnant with Junior, our family was going through some really tough things. I was on bedrest, my mother-in-law passed away suddenly, and my grampa was diagnosed with cancer. One day, the old hymn Blessed Assurance popped into my head. It soon became “Junior’s song.” I sang it frequently to the little one in my tummy, hoping that his life story would be one of blessings from God.

Once Junior was born, I stopped singing. He couldn’t hear me anyway, so we would both sit in complete silence as I held him and rocked him. My heart broken that he couldn’t hear my voice. That those months of singing blessings on him in my womb had fallen literally upon deaf ears.

This is my story, this is my song. Praising my Savior, all the day long.
This is my story, this is my song. Praising my Savior, all the day long.

I just couldn’t understand why God had put that song into my heart and upon my lips if Junior wasn’t going to hear it. Why even bother giving me a song? Didn’t he know that Junior was going to be deaf? It felt like a cruel joke.

Fast forward about a year. Junior’s cochlear implants had been activated recently, and he was on the road to hearing. We opted to get genetic testing done to determine the cause of his deafness. There was nothing definite or conclusive, but we did find out that he has a “variant of unknown significance” on a gene that causes progressive blindness. (Three years later and we are still in a wait-and-see mode about that.)

About a year after that, 2 year old Junior was hearing pretty well and was starting to say words. He enjoyed listening to our voices, and one day when he was dozing off in my arms, Blessed Assurance popped back into my head. His ears were still on, so I sang it to him. I sang that hymn for the first time in a very long time.

I reached the second verse, the melody having put him to sleep, and it clicked. The words made sense. I finally understood why God gave this song to Junior.

Perfect submission, perfect delight,
Visions of rapture now burst on my sight;
Angels, descending, bring from above
Echoes of mercy, whispers of love.

Visions of Rapture. Echoes of mercy. Whispers of love.

God knew that we would be worried about Junior’s vision. He knew that our little boy’s ears wouldn’t function the way they should. He knew this path we were going to walk, because he gave me this song before our son was even born. He knew that eventually Junior would be able to hear sounds, whispers, and voices.

Echoes of mercy, whispers of love.

Junior can hear my whispers. Sometimes I whisper across the room, “I love you”, and he whispers back, “I love you too, momma.” That song was a foreshadow. A reminder. A promise.

God knows your journey. He has always known the path you were going to walk. The ups, the downs, the valleys, and the peaks. The road you are traveling was not a random, luck of the draw event. He knew. He knows where you’re going, where you’ve been, and He just wants you to rest in the promise of His whispers of love.

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“It’s Not a Big Deal”

Baby Junior

I really grieved when Junior was first diagnosed as being profoundly deaf. I cried, I moped, I thought about how the life I envisioned when I set out to have children was suddenly so much different than the life I now had and it just wasn’t fair. I thought about his future, the challenges he was going to face, the bullies he would have to ward off, and the stares he would have to endure.

What was worse than a few months of grieving, however, were the well-meaning people who made me feel guilty for grieving…made me feel like deafness just wasn’t “bad” enough to be upset about. One morning a few weeks after Junior was born and had already failed three hearing tests but hadn’t yet been diagnosed, I was really struggling with my postpartum emotions. I went to my doctor and explained the added stresses I was facing on top of the normal hormones of a recent birth, hoping to hear some encouraging words, but do you know what she said to me?

“So what if he’s deaf. It’s not a big deal. Just learn a little sign language.”

It’s been 3 and a half years since she spoke those words to me, but they are still as fresh as the moment she opened her mouth. I didn’t have the wherewithal to protest at the moment, but those words burned. I didn’t need someone with typical, healthy children telling me that I wasn’t allowed to grieve because it was “no big deal”.

As I told friends about Junior’s recent diagnosis, I heard many of the same sentiments:

“It’s not like it’s cancer or anything bad.”

“At least he’s not blind too.”

“He’s just deaf. He’s fine!”

“It could be worse.”

Yes, I knew things could have been worse. There were plenty of people in more difficult situations than us. But, that didn’t mean I wasn’t allowed to grieve. It didn’t mean that his deafness was “no big deal.” Especially when those comments came from people who had never been in the special needs world, had never experienced the pain of knowing their child was going to have added struggles in life.

I had to grieve before I could move on. I had to accept the reality before I could become his loudest cheerleader, biggest supporter, and strongest advocate. I had to go through all those emotions, because it was a big deal. It was my child, and I was scared of an unknown future.

At just a few weeks old, we were making decisions for Junior that would affect him for the rest of his life. When I was supposed to be settling into the hectic, sleepless world of having a newborn and toddler, I was spending 20+ hours a week at or traveling to doctors or therapy appointments. We were planning his life weeks, months, and years down the road. It was a big deal.

The comments that were said to make me feel better, only served to make me feel worse. Not only because I felt guilty for grieving, but also because I realized that compassion and empathy is rarely found in those who have not traveled the special needs path.

Looking back, the grieving process was a short but crucial part of our journey. Without it, I wouldn’t have forged lifelong bonds by reaching out to others who had walked this path, and I wouldn’t have realized that the valleys make the peaks that much more triumphant.

I realized that no matter what they’re going through, our beautiful children are a big deal.

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Update on Junior: Fall 2015

IMG_7725I can’t believe it’s already Fall. Summer really did fly by…between our family vacation to the beach, Tater’s and my journey to Canada and seeing family in New York, Junior’s therapy, house projects, and school (Tater started 2nd grade in August), I feel like I’m finally coming up for breath.

We had planned for Junior to begin preschool at a local church two days a week to help him learn good speech habits from his peers, but at the last minute, we decided with his speech therapist and OT to keep him home until he turns 4 in May. So, he’s starting to do “school” while Tater does. It’s taken two years of therapy, but he’s finally learning to sit still and focus on a single task. It’s so incredibly exciting to have him color or play with blocks for a solid 10 minutes while I work with Tater when this time last year he wouldn’t sit still more than one to two minutes. It’s the little things :)

As far as his speech, he’s starting to understand a lot more (receptive language), and is starting to say more words (expressive language). His receptive language is close to age level (he’s behind by a couple months), and his expressive language is about the level of a 2-2.5 year old. He’s doing pretty well, although his enunciation is lacking. In true little brother form, he can often be heard telling Tater to “go to timeout” when he’s mad at her, and has started saying “Bless you, momma” when I sneeze. So, he’s up to 3 word phrases. We’re hoping to get him saying full sentences soon!

Thanks to LeapFrog Letter Factory he’s started running around the house singing his ABCs, and can count to 20. He also sings Amazing Grace every night before bed, which brings tears to my eyes. Every. Single. Time. His cochlear implants conked out a couple times this summer and had to be replaced, but we were grateful that he was able to wear his backups so he didn’t miss out on any hearing time.

Junior received a big boy bike for his birthday (with training wheels), but just recently started riding because we had the hardest time finding a helmet to accommodate his cochlear implants. We finally had great success with the Giro Raze Kid’s Helmet (affiliate link) and it’s been fabulous. He can keep his ears on and keep his head safe! He also enjoys pretending to play golf and climbing whatever play structure he can find. Junior is so sweet, but all boy. There is never a dull moment with him!

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10 Reasons Why Having a Child With Cochlear Implants is Awesome

10 Reasons Having a Child with Cochlear Implants is Awesome

10. They are the envy of all other children who do not have the ability to stick things to their heads.

“Why yes, I do have a magnetic personality.”

 

9. You don’t have to worry about vacuuming while they sleep.

Or, you’ve ever accidentally woken up someone else’s sleeping child because you forgot they can hear. Oops.

 

8. You have your own secret language.

To some, an Audi is a car. To us, they have magical sound powers. Both cost about the same.

 

7. If there’s ever bad language in a movie, you can pull his ears off.

Uh oh. He can lipread…

 

 

6. Every other cochlear implant family is an instant friend.

They just “get it”.

 

 

5. You have a reason to smile every single day. 

“Mommy” is the most beautiful word you’ll ever hear.

 

 

4. They can take their ears off whenever they want.

Husbands have been begging for this technology for centuries.

 

 

3. You’ve gotten really good at responding to dumb strange questions.

“Why yes, our toddler has her own Bluetooth for all her business calls.”

 

 

2. You have to laugh at some of the things that come out of your mouth.

“Don’t you dare throw your ears out the window!”
“Your ear is stuck to the refrigerator.”
“Please get me a pair of tongs. Someone threw their ears behind the bed.”
“Why are you beeping?”

 

 

1. Your deaf child can HEAR!

It hasn’t been easy, but they’ve come so far, and so have you. From diagnosis day until now, they have worked hard, overcome, and become an inspiration. They’re your super hero.

Start with Junior’s Story, Read about Diagnosis Day,  and see my list of “You Know You’re a CI Parent If…”

 

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When Hard Means Good

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I collapsed onto the couch at the end of another long day. Both kids were finally in bed, but Junior was still making a  vocal protest about having to sleep, as he does every night.

“Why did God give us such a challenging kid?” I asked my husband, as I thought back on that day of another meltdown in therapy, a screaming fit in the car, and an emotionally draining afternoon trying to reason with an overtired 3-year old that consistently refuses to nap.

“What do you mean?” he responded, though still engrossed in ESPN.

“My friends all have easy kids. They sleep, they understand the word “no”, and for heavens sakes, they go to the grocery store and actually hold onto the cart!”

He must have sensed that my question held an underlying insecurity, because he turned to face me as he considered a response.

“Why do you assume that easy means good?” he asked thoughtfully.

Huh?!? Of course easy means good! Easy means sleeping more than a 4 hour block, it means going on an airplane without stressing for weeks that he’s going to have a meltdown 10,000 feet in the air, it means going to the park and playing with friends instead of going to therapy again, it means never having to explain why your child is different…

But then, suddenly, something in my brain clicked. Easy might be good, but that doesn’t mean that challenging is bad. No, challenging is good in it’s own special way…just like Junior.

When he wakes up in the morning and says “ears!” because he wants his cochlear implants on…that’s good! He has had to work hard for every sound he hears; hundreds of hours of appointments and therapies in the last 2 years, but the pride I see when he completes a listening task is better than good. It’s a miracle.

When he sits in a chair and plays with play-doh instead of throws it…that’s good! Yes, it took 3 months of OT to get him to sit still for 5 minutes, but it was worth it!

When he goes up to his sister and hugs her instead of hits her…that’s good! It only took 327 times of saying “we don’t hit” before he finally got it (this time, anyway), but it’s still progress.

If I’ve learned anything in the last 3 years, it’s that the harder you work for something, the more obstacles you face, and the more sacrifices you make, the more you appreciate it.

My life with Junior isn’t ever going to be easy. But my perspective about his special needs has shifted. I appreciate the little milestones more than any typical parent is capable of. I don’t take those baby steps of growth for granted. I know how much hard work, sacrifice, tears, and sleepless nights have gone into every ounce of progress, and that means everything. And, at the end of the day, I guess I don’t want an “easy” kid, I just want Junior.

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