Tuesday, September 4, 2012

New Year

The air in this house is electric this evening.  After one unforgettable summer it's time for school.

Both girls struggled to fall asleep tonight.  Before I went in to retuck them for the third time it was funny to listen to them chatter back and forth about school.  Paige was giving Gwyn the rundown about what to expect on the first day of kindergarten from a kid's perspective.  The sisterly talk between them was just really sweet.  When I went in to get them settled, Paige confided that she had some second grade jitters.  She just was so worried that her teacher would not be nice and the homework would be hard.  For a second I almost laughed, yet both are valid concerns for a seven year old to have.  After the reassurance that teachers really are nice if you do your job as a student and the fact that her mean mommy made her do tough homework throughout the entire summer so how could anything from school be that bad, she was reassured that second grade would be just as awesome as first grade.  Not long after, both girls finally drifted off to sleep.  

Like them, I've struggled to fall asleep the past few nights.  Even though I have been tired, even fallen asleep on the couch, when I have gotten to bed, I have just lied there, awake.  Then, I don't know if this has happened to any of you, but once I'm out cold, I've been trapped in one of the most exhausting dreams.  When I'm worried or stressed, I usually have one of two dreams, either the restaurant dream, where I am working, totally slammed, and just cannot keep up with what is going on.  The other is the back to school dream, where I'm just frantically trying to get everything ready.  Lately my dream is different, I have been juggling Cole and all his gear at the airport before being bounced like a super ball from appointment after appointment.

Perhaps my panic dream has changed because of where I am these days, or because of what is ahead.  While we knew we might be headed somewhere else, now that it is finally in motion the entire situation feels surreal.  Late Friday, we received a call from our immunologist's office.  They had finally heard from the expert in Texas regarding Cole's tests.  He wanted to look at Cole;s blood himself and was sending us a consent form of some sort, we were to read it, then, come in to discuss and ready to sign in a few days.  Unfortunately, the fellow could not share any additional information with us as she was merely calling to let us know it was on the way and to clear our schedule for a particular time.

Throughout the night and next morning I restlessly checked my email, digging through messages as if I were looking for treasure.  Finally, I decided to check once more before heading to bed.  There it was.  Due to the rarity of Cole's condition, he's been invited to join a study regarding his nk cell deficiency.  A great deal of this test will look at the various pieces of Cole's DNA in order to understand the variables in his genetic code causing his condition.  Luckily, from what we understand, the researchers will look at all aspects at this level that could be related to nk cell function and share necessary findings with our physician.  We will not have to wait for approval for various studies, just the information.  According to the consent, we will have to travel, however we don't know when or for how long.  Yes, we have a few questions, but our boots are on, ready to hike down this new fork in the road.

Pathology does not lie, so I know Cole is not 100%, yet at times I just don't believe all of this.  More than ever, he has seemed just like my other kiddos, normal.  Receiving the consent just reminded me of his reality, that no matter how typical some of our days are, he is one special little boy.  I'm hopeful that this new path will not only give us answers and options for Cole, but hope these researchers learn enough to make a difference for some other kids and their families so their journey is a little lighter.

It's going to be a week of many beginnings here.  Each one is full of promise.  I'm ready for them all to be outstanding!  

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