No Matter What Anyone Else Says…

dress_up

Like many children, I was bullied and teased throughout my school years. I was profoundly deaf in one ear, my legs twisted in instead of out so I walked funny, I had severe permanent skin depigmentation on my neck, chest, and stomach, and I had to wear very strong glasses. Looking back, I also had sensory issues that would have been labeled if I were a child today. Apparently, I was different from all the other kids, and they made sure to tell me about it.

But, my parents worked hard to make sure I never felt different. The things that could have been considered impediments were just a part of who I was. My parents constantly encouraged me that I will always have something worthwhile to offer, no matter what anyone else says. That everyone has a special gift or talent to share with the world. They inspired me to find the things I could do, instead of focusing on the things I couldn’t do.

My parents always encouraged me in whatever activities I wanted to undertake. I had a hard time running for any distance, but baseball became my passion from a young age. I would spend hours poring over statistic books and sports magazines and watching my favorite Major League Baseball team play. I struggled with handwriting and anything that required fine motor skills, but exceled in spelling, eventually reaching the State Spelling Bee twice. My single sided deafness made it hard to play group games on the school playground because it was too noisy to hear, but in carving out a quiet place, I was able to have meaningful conversations with kids who would later become lifelong friends.

My parents told me I was enough, over and over, day after day, even when I didn’t feel like it. They made me feel like I was enough by always encouraging me to find my strengths and offering praise when I improved in any area I struggled in, however insignificant a gain.

Fast forward, I’m all grown up and now the mommy of a precious little boy who is profoundly deaf in both ears and also has severe sensory processing disorder that impacts our everyday life. I desperately want to give him the same gift that my parents gave me. The gift of enough. I want him to feel loved, talented, confident, and full of worth. Even–no, especially–when he realizes that he may be a little different than other kids.

I want to help him find the things that he will excel in, the things that will bring him a sense of accomplishment, and help him focus on those, while instilling in him the courage and tenacity to try to improve in the areas where he is challenged. His limitations can be turned into assets if he has the right frame of mind. He has so very much to offer this world, and I never want him to forget it just because his talents look different than someone else’s.

Despite any limitations that seem to stand in our way, each one of us has some unique and special gift or talent to offer, no matter what anyone else says.

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Top 10 Posts of 2015

It’s somehow 2016, and I know I say this every January, but how on earth is last year already over?

Our family had a pretty good year altogether–if you don’t count a rocky December, but I’ll talk about that in another post. Our year consisted of several road trips, lots of school, and some pretty exciting milestones from Junior.

Here are my Top 10 Posts of 2015…which post was your favorite?

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5.

 

 

 

 

 

 

 

 

 

 

 

 

4.
Niagara Falls and Upstate NY with Kids

 

 

 

 

 

 

 

 

 

 

 

 

 

3,

30 Minute Chicken Tortilla Soup

 

 

 

 

 

 

 

 

 

 

 

 

 

2.
10 Reasons Having a Child with Cochlear Implants is Awesome

 

 

 

 

 

 

 

 

 

 

 

 

 
1. Sharing Secrets…A Look Back at Diagnosis Day

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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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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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