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Friday, July 10, 2015


I've grown to hate the word perfect. Since the day Hunter was born, the word perfect made me cringe. People all around me were having babies, and of them was Except for mine. Mine wasn't perfect, at least not in the formal definition: "having all the required or desirable elements, qualities, or characteristics; as good as it is possible to be."
As little as my mind was during my mid-twenties, it took almost a handful of years to be able to accept the word perfect back into my vocabulary. Even a year and a half ago, when Harrison was born, I never ever ever used the word perfect. My thinking was that I didn't want to offend anyone who had a baby with a disability who wasn't able to describe their tiny miracle with an adjective like 'perfect'. Not that people were offending me by using the word, I was quietly taking offense against myself (if that even makes sense) when other people described their babies as perfect.

But if you look carefully at the definition of perfect, the last leg of it states "as good as it is possible to be", and that's the part that I wasn't looking into enough.
Hunter was born a healthy baby with all of his limbs, that's as good as possible. All we had really hoped for. But in my tiny little head, he still just wasn't fit for the word perfect.

What a shame for me to feel that way about my son. Why couldn't I ever call him perfect to my family and friends? Because he was perfect to us. He was perfectly born to the perfect family to fit HIS perfectly planned out needs.
Blair and I aren't perfect. We are very far from it. But we are perfect for each other, and we are perfect for Hunter. And by perfect, I mean perfectly learning from our everyday mistakes, perfectly trying to improve ourselves, our habits, our daily lives and perfectly loving our kids to the best of our ability.

Every day I go around noticing imperfections about myself. My hair, my body, my diet, my attitude, my work, my memory, my love for God, my organization (or lack thereof). And then one day, I saw Hunter taking pictures with my phone, and I heard him whisper, "Oh no, that one is not perfect" and I stopped in my tracks. I had no idea where he had heard the word perfect (except for maybe if he was inside my head) and I wasn't even sure he knew what it meant. But I decided from that day forward that I needed to give the word perfect another chance by giving it another meaning. And that new meaning for me is being perfectly created in the image and likeness of God. Because in God's eyes, we are all perfect. Flaws, wrinkles, weaknesses and all. We were created uniquely perfect, and that's good enough for Him.

I don't want my kids to grow up comparing themselves to the rest of the world and thinking that everything they say and do and see has to be perfect. I just want them to know that they were born that way. And when I look at Hunter's baby pictures, I know he was perfect, even though I wasn't willing to admit it. I know he was created perfectly by God and placed into the family that could perfectly give him what he needed (with our imperfections as well.)

So welcome back to my vocabulary, perfect. You are beautiful and allowable in my world again.

Ps. I haven't gotten that perfect family of 4 shot lately because half the time my 4 year old is hoarding my phone or my 1 year old has "hidden" it somewhere, so here are a few others (photobomber included)

Annual CI Mapping & More Updates

We traveled to New Orleans a few months ago for Hunter's annual mapping update and to visit a retinal specialist who spoke at the Usher Symposium in Baton Rouge back in October. I apologize it's taken me so long to post an update, but the update is boring. And I have to say, I am a big fan of boring when it comes to these kinds of things. We don't want any road blocks thrown our way, we don't want any unusual results or problems. We LOVE boring, "he's doing very well, keep up what you've been doing and see you back in a year". AMEN! Thank you baby Jesus!

Here are two videos from his mapping appointments. His ears are hooked up to the computer and when he hears a beep, he has to put the banana in the bucket. It's interesting to watch and learn about. I say interesting, but I should say miraculous!

The retinal specialist sees a good number of Usher Syndrome patients, including children, and we wanted to be a part of her practice so that we can start seeing her on an annual basis, on top of his normal ophthalmologist. She took lots of pictures, looked in his eyes, and said she also sees the US indications, but that overall the eye health looks better than others his age. Amen! Thank you baby Jesus! She was amazing, and we are lucky to be able to see her. 

And let's just give the Aqua+ accessory another shout out, because it makes swimming lessons a breeze! Hunter is acting like a fish and really learning how to swim well by himself!

Hunter also played his first season of T-ball this past spring. We found a helmet that we were able to cut the padding out of so that his ears could fit without too much trouble, and although things started out a little rough, he was doing SO well by the end of the season. He even started running in the right direction by about the 5th game :) See below. My boy, playing t-ball with his friends. He can do whatever he puts his mind to!


And of course his biggest fan was always in tow...
Here is a picture from Hunter's 3rd hearing birthday!
And the following are pictures from Hunter's LAST day of Pre K 3! It's crazy how much he grew during this school year, inside and out :)


The New Face of Usher Syndrome

When we started this Usher Syndrome journey with Hunter, we said we were going to give Usher Syndrome a new definition, a new face, a new hope for everyone affected by it.
Although the time I spend working with the Coalition and others affected by US is only a very small amount of the time I WISH I could put forth, everyone's efforts are definitely coming together, no matter how big or small.

I am in New Orleans this weekend for the Usher Syndrome Family Conference, and as I logged onto the Usher Coalition's website, I see my baby's face on the home page. A sweet sweet face, with such an innocent look. Big blue eyes that have been complimented since day 1. And he has no idea that his face is being viewed all over the world. Various countries, thousands of people, old and young. He has no idea that his diagnosis gave his mama a new purpose for living. Something to fight for, something to win, a story to share and relate and laugh and cry with. I don't have much experience with this diagnosis just yet, being the Hunter is only 4. But I feel like I've learned more about my family, myself, my friends, my support systems, and about life in general in the past 4 years than I did in my first 27 years of living. As my mom always says about herself, I'm a work in progress, but constantly striving to improve. Finding beauty in the unexpected. Finding joy in our journey to Holland. Learning that as lonely as we may feel at times, there's always someone out there who is feeling the exact same way, whether they share it on social media or not.
The people we will gather with at the family conference tomorrow all have one common goal. One common purpose and that's why they travel from near and far to be here. It's nothing my close friends will ever understand, but that's ok. It's nothing you can relate to until you're dealt the same cards. To be brutally honest, it's freaking scary at times. At times,  I let my fear of the unknown get the best of me. But this weekend, it's a positive outlook into what potential cures are on the cusp. It's a heart-warming gathering that puts our perspectives back into place. That makes us feel a little less alone.

That little boy in the picture has no real idea of what he's coming to New Orleans for. He's mainly concerned with the exciting opportunity to be able to sleep in a hotel for two nights :)
One day he will get it, one day he will realize that his face is the new face to Usher Syndrome. He's going to move mountains, and with great faith and hope, his future will be the new definition of what a life with Usher Syndrome looks like.