Wednesday, April 24, 2013


Last year, our plans included a couple of week long family vacations. What wasn't in the plans when we scheduled these trips was the additional 30+ days of work I'd miss due to hospital admissions for Jack. Given the events of last year, I've been hesitant to make any vacation plans this year. However, the guys I work for made it clear that I was to take vacation time and not worry about how much time I was off last year.  Needless to say, they didn't have to twist my arm to get me to comply.  To date, I've only taken a few days off - limiting my vacations to long weekends.  

We've now made it almost to the end of April without a hospital admission or any significant issues with Jack.  I don't really get why Jack is doing so well at the moment given he's dealing with the same issue he was dealing with this time last year.  The only difference now is that he is on a couple of new meds and we've increased his water intake significantly - which, apparently, are working to keep the pain he experienced last year at bay.

Because Jack is doing so well, I took a leap of faith this week and booked a bunch of flights to several different events taking place later this year.  I sure hope I didn't just jinx myself!

I plan to attend the Cure CMD family conference that will be held at the NIH in July.  I'm excited to meet the CMD families who live on the East Coast. I'm also going to take advantage of being so close to a couple of my trach-mom friends.  If things go as planned (Ha!), I hope to finally meet my friend Christy!  Christy lives about 100 miles from the NIH - which is nothing compared to how many miles apart we are now.  The only potential hiccup in our plans is that Christy's daughter, Harlie, will be having major jaw surgery at Boston Children's a few weeks before I'll be out there and it's hard to know how long she'll be inpatient following surgery. But, the way I see it (as I see most things in life these days), is, if its meant to be, it will happen.

The kids (sans Jack) and I plan to travel to New Jersey for my niece's wedding in October.  I also have plans to hike the Grand Canyon in May and I'm doing the Disney half in September.  I have a few other trips on my wish list, but haven't booked those yet.  My schedule is full.  It feels good.  To feel like I can actually make plans beyond next week is such a feeling of freedom.  You have no idea (well, some of you do) what it means to just be able to make plans, let alone actually carry them out, when you have a child that requires the level of care that Jack does.  There is always an element of fear - fear that the best laid plans will come crashing down around me at any given moment. But, I'm trying to not allow myself to be held hostage by all the "what ifs" and to just go for it. 

Right now - at this moment, life is good.  I'm taking it and I'm running with it for as long as I can.  At least that's the plan. 



Christy said...


I REALLY hope it works out that we get to see each other! I'm so excited! If that doesn't work out, maybe I can come to NJ? I'll do whatever I can!

I am so glad to hear how supportive your work is for you to get some time off. Love that!

As far as Jack doing well right now - you just need to ride the waves when they come. And enjoy it while it lasts. Love to hear all the exciting stuff you have going on (especially considering some of it includes me!!). ;-)

Love ya!
Christy ox

Melisande Statz-Hill said...

Good news, Anne!! We'll take that anytime we can get it! <3


Susan said...

Ann I'm really glad you are able to make some plans and have the stability right now to be able to stick to them. What a great thing!I hope one day that we too will get to meet up.