I am a planner by nature — I love to organize. I’m that person who’s closet is organized by sleeve length and color, who’s pantry has a specific place for everything, and who throws out anything I have not used in a year. This “planner” instinct is one of the hardest things to make adjustments for, especially with Scott’s illness. Scott and I love to travel, we’ve been to many places in the world, and as his health has deteriorated we haven’t been able to do much of this, well that and having a toddler! Our vacations are now limited to the states. For many who travel they plan out trips/purchase tickets months in advance. For us, weeks in advance, as we never know if Scott will be healthy enough. So a couple of weeks ago we decided (since he was feeling pretty decent) to schedule our yearly Disneyland trip! I began planning out the trip, what to pack, where to go to eat, what rides Seeley would be able to go on, etc. Three days before we were going to leave Scott started feeling awful; he was having difficulty breathing, a fever, and was coughing up lots of mucus. So in to the hospital he went — of course this freaked out the planner in me. What would we do if he didn’t get out? Go without him? Or eat the money for the hotel? Ugh. End stage Cystic Fibrosis really makes life difficult and unpredictable!
After speaking with his doctors, they decided that they would let him out to go on the trip with IV antibiotics and a daily saline bolus, along with all his other medications and therapy’s, and of course he would have to sit in his awesome scooter. I immediately knew this was going to be an interesting trip to Disneyland — a sick husband and a toddler. Yikes. But we were determined to go, not only because we love to go to Disney, but because we don’t want our son to miss out on life’s adventures because of this disease.
So off we went and the planner in me was pushed to the wayside. Life does not always have to follow a specific, perfect plan. Sometimes you have to let go of all of the little things so you can enjoy the moments. It’s in these moments that I find true joy; when I can let go of the “plan” and live life freely. And because of this we were able to have an amazing time laughing and making memories.
I will say that traveling with a wheelchair in tow can be a bit tedious at times. This time last year when we went to Disneyland Scott was not bound to a wheelchair for short distances and it was much easier to navigate. With that being said, Disneyland is very helpful and accommodating which made this new adventure manageable. Plus Scott was able to tote Seeley around for short durations, which gave me a much needed break! The little guy is a bundle of nonstop energy!
I’m going to leave you with one of my favorite quotes —
We must be willing to get rid of the life we have planned, so as to have the life that is waiting for us. — Joseph Campbell
Enjoy the life that is waiting for you. Don’t get hung up on the plan. And don’t ever take for granted the life that you have been given — there is beauty to be found even in the darkest of places.
Breathing out all the plans and going with the flow,