Finding the extra in the ordinary

So there's this kid.  He's 15.  To his dismay, he may be almost done growing- he's nearly 6 feet tall and currently weighs 185.  He's always had size to his advantage- giving him confidence on the playground, the court, the field, among his friends.  Physically, he's very strong, and more has always been expected of him because of his size.  There are advantages and disadvantages to this... and one thing that is often mistaken about him is that he's a big, mean, cold-hearted kid.  Those of us that know him best, however, know that he is not this way at all.  He's a softie.  But that's suppose to be a secret from the general public, I believe.  Hence the "scowl face" he has adopted as his normal expression over the last year.

So it's moments like this one from last night that choke me up way more than watching him sack a quarterback, steal a rebound from that giant kid from Northwest Christian, or wrangle an ornery steer across the corral.  It's the ordinary moments.  Like when we've gotten home late from a school event-  homework has come out and Kacy is shuffling around in his pajamas.  Kacy walks over to the kitchen island and reaches up for Tyler.  He's scooped up and held while geometry homework is finished.  For Kacy to initiate this is rare but for Tyler to respond is not.  He's always got time for his brother.  And it's these moments that I don't want to forget.  It's these moments that make me realize, it's all good, diagnosis or not.  It really is. 

On the way home from dropping Tyler off at driver's ed this morning, my man, George Strait, sang to me... a song I had forgotten about but one of my favorites.  

"Life’s not the breaths you take
The breathing in and out
That gets you through the day
Ain’t what it’s all about
Ya just might miss the point
If ya don’t slow down the pace
Life’s not the breaths you take
But the moments that take your breath away..."

(side note:  Tyler's a great kid and wonderful brother.  But still grounded for a month in spite of moments like this!  He is very typical in most respects! lol!)

On the Upside...

I've been in the dumps.  Wallowing.  And I was starting to feed off it.  Figuratively and literally.... thank you, Cool Ranch Doritos and Dove chocolates for the 10 pounds I have put on in record time.  

So I decided to distract my mind for a bit and put together a couple of videos for my boys.  Tyler and his love for football -- and Brett and his complete adoration for all things basketball.  The laundry piled up.  The dust bunnies partied in the corners.  The weeds grew tall in the cool, rainy, sunny spring weather.  But the boys loved their surprise and it was worth it!  

Again... a large responsibility of mine is ensuring they remember their childhood as being as much about them individually as it is about them as a Kacy's brothers/protectors/helpers.  And this is just another attempt at doing that.  (If you choose to watch, you'll need to pause the music player at the top of the page or else you'll get a very unappealing auditory experience.... Also, on my computer, it is viewed best on YouTube.  You just have to click the "YouTube" link in the bottom right of the video.)

Love you, boys. To the moon and back.  

Someday, everything will make perfect sense.

Challenging week in our home.  Teenagers breaking rules.  Disappointment in those who seem to disvalue friendship.  Grief over the unfortunate choices of others and how it is affecting those who love them.  Concern over health issues of friends and family.  And an anticipated diagnosis didn't come.  

About six weeks ago, Dennis and I took Kacy to Seattle Children's Hospital where we met with several specialists who encouraged us to do some genetic testing.  A neurodevelopmental specialist basically prepared us for the blood tests to confirm something called Fragile X Syndrome.  For the past six weeks, I have watched the sun come up while researching this syndrome, reading books, watching videos, exploring  blogs written by parents of children with Fragile X, joining facebook groups around this syndrome, and talking with my close friends and some family about it.  The strangest part, for me, was coming to terms with the fact that we didn't have this unique little boy who was writing his own book with his varied assortment of quirks, behaviors, and preferences.  To learn that there were other "Kacy's" out there was strange to accept.   For so long we have felt as if we were isolated in our journey.  Even stranger to accept was that there are some of those children whose appearance so strongly resembles his, they could be his brothers!  But didn't take long before I realized this anticipated diagnosis was actually providing a sense of relief!  Kacy seemed to fit perfectly into this box labelled "Fragile X."  Learning just  how many Fragile X Syndrome characteristics he has and the fact I may now be able to answer, "Pardon me for asking, but what IS Kacy's diagnosis?" brought a peace within me that was ten years in the making.  There is so much about his care that would be simplified by this label.  So many loved ones that could now come to terms with Kacy, the reality of what is going on, and how we need to be handling it.  Support groups.  Mailing lists.  Meetings to attend and clinics that had waiting lists we could get on.  A direction for the care we so desperately want to provide him. 

But in less time than it takes to read this post, that diagnosis was eliminated.  

"The blood tests did not come back positive for Fragile X, or any of the 250 most common chromosomal disorders,"she said.

Silence.  

"Mrs. Kincaid?"

"I'm sorry.  I'm just so shocked."

"Me, too, Mrs. Kincaid."