The best laid plans...

Don't you just love how you can plan things, sure that you have covered every possible detail, then life laughs at you and throws you a curve ball?  Yep, that's been my last week and a half.

First some good news.  Connor had an opportunity to do a radio spot for 22q awareness.  He did fantastic!  He and I were interviewed a while ago and a script was written for him.  We practiced it together and when he was in the sound booth he did great!  I haven't heard the edited version yet, if I figure out how to upload it here I will definitely share it!!

The sound booth was a little intimidating, but the staff did a great job making him comfortable!!

We also were given tickets to a Dayton Dragons baseball game.  We had a lot of fun!  The boys and I love going to Dragons games, they are so family friendly!  We wore our awareness shirts from the Dempster Foundation and had 3 people talk to us about them.  Awareness success!

Connor had several appointments, and they were a mix of good/bad.  He saw Genetics and Developmental Pediatrics.  From a 22q perspective, Connor is doing fantastic.  But he is struggling with a neuromuscular problem that isn't related to 22q, it looks like Charcot Marie Tooth syndrome, which is in the umbrella of muscular dystrophies.  It's not a good diagnosis, and it bothers me on a deep emotional level that he would be hit "twice", first with 22q then with CMT.  His Geneticist reminded me that having 22q does not make him immune to anything else bad that can happen to him.  While I know this, it still feels...unfair.  We don't know *for sure* yet that he does have CMT, but his symptoms and his tests are pointing us that way.

On some level it's like starting over with the grieving process all over again.  It's been over 5 years since he was diagnosed with 22q, but this CMT diagnosis is new.

And for the last 6 months (including a good portion of the tests and evaluations for CMT) my husband hasn't been here.  He's off doing some very important work in a different country.  While we are able to talk every day, I wish I had him physically by my side for some of these appointments.

I want my partner back.

Hard to believe it was 6 months ago that we hugged daddy goodbye!  

There's also a bug working its way through our house.  Or perhaps 2 different bugs.  We're experiencing some tummy issues and some cold-like symptoms.  I woke up this morning feeling like razor blades were in my throat.  2 days ago I spent the entire day nauseous.  Gavin has been coughing and Ian has been spending a lot of time in the bathroom.

This isn't what I planned.

You see, my husband comes home in about 24 hours for 30 days of vacation.  24 hours.  We haven't seen him in 6 months, and we get sick in the days before he comes back.  If this guy Murphy and his stupid law could leave us alone, I'd be eternally grateful.

About 12 hours after Jim comes home I am supposed to be leaving for my next race.  A race I'm not exactly ready for.

But I will run.

It might not be pretty.  Assuming Jim's flight comes in on time, I am not likely to get much sleep at all the night before the race.  And if the flight is late, even less sleep.  I will have 3 very excited little boys, a very tired husband who will be thrilled to see us all, a whole lot of luggage to take care of, and possibly a late night dinner out as a family for the first time in 6 months.  Assuming he wants to eat, that is.  Total travel time to get home is 45 hours for the poor man.  

But I will run.

I will run because it's good for me.  I will run because overcoming obstacles is the point of this whole "marathon".  I will run because I can.  I may go slow, I may be sore later, but I won't be sitting on the couch all "woe is me".  Connor doesn't get to give up.  He's running his own "marathon" with 22q and now with CMT.  He can't throw in the towel and say "never mind, I didn't get enough training in, I'm going to sit this one out."  Nope, he wakes up each morning and laces up his running shoes and faces life.  So I will get up Sunday morning, lace up my running shoes, and run.

Oh, and as a "welcome home" bonus for my husband, I got my hair done!!  That's bound to put any woman in a better mood, right?