There was some real anxiety leading up to a four-hour drive to Washington D.C. Taking two children, one who is neuro-typical, and one who is disabled, requires A LARGE quantity of “STUFF.”
That was the least of my worries- fitting all of the stuff into a suitcase, into a car, for a long drive together.
There was so much more that was packed into this bag- the “what-if” or “just in case” stuff. What if one of them gets sick? Bring the Motrin. What if Hailey has a respiratory issue? Bring the inhaler. What if she throws up in the car? Bring a few towels and extra wipes.
But what did not fit into our suitcases, were the worries jam-packed into my head. There was no way to fold it up neatly, pack it away until later on…instead it was just rattling around in my brain, uncontrolled and without any rhyme or reason.
There are so many things in life we cannot plan for, as I have learned the hard way. I planned on having two healthy children. I planned on doing things a certain way and living a life that was always written down in my invisible planner.
The last two and a half years have been the biggest life lesson- you literally cannot plan for anything.
My child was premature by 5 weeks. Covid confined us to our homes, confused us, and scared us for years. A rare disease changed the entire trajectory of our lives. I, along with so many others, certainly did not plan on those things.
As I prepared for this weekend getaway, I was unsure how I would feel being in a different city, a different state, with people who just did not know us.
Stopping at a rest stop was my first moment when the anxious feelings crept out of my suitcase. It followed me all the way into the changing room. Were people looking at us? Did they wonder how old she was? Am I projecting these worries? Do people even notice?
We then arrived to the hotel. The sweetest, most personable and hospitable gentlemen greeted us at the door and commented on how cute and little Hailey was.
“How old is she?”
“Two and a half.”
“Oh, wow.”
And that was it. 10 words. 10 words! And my mind started racing. Do I explain to him that she is small for her age? Do I tell him she has a rare genetic syndrome? Do I just walk away?
Naw, I thought to myself, as I literally pushed my suitcase up the ramp. I’ll unpack these thoughts later.
The trip resumed. We had dinner with our family, a friend, and the night was a success. I tucked away some of my inner struggles and had a good time. See, I thought to myself, I can pack pretty well. My invisible backpack was hidden.
The next day, we had a delicious breakfast and planned on doing a little sightseeing and touring some museums.
As we were strolling down a street, out popped a family. It took me a minute to adjust and realize that we had run into a family we had met previously at the Jordan’s Guardian Angels conference just weeks prior.
No, they did not live in DC, they were just visiting. No, we had no idea they were there.
It was like the stars aligned. I had just spoken to so many people about how I truly missed the families we met at the conference. I had felt so connected to them and such a sense of comfort. The weeks after, I had felt somewhat of a disconnect to the world, and felt ill at ease when out and about.
But right in front of our eyes, was this wonderful family who we had only met once in person, but I felt so connected to through our understanding of being a rare disease family.
We spoke for a little while and went our separate ways, but I could not stop thinking about how rare, how ironic, how crazy it was that of all the streets in DC, of all the places to be, we ran into each other.
While this trip made me feel anxious leading up to it, I realized that you can pack everything you need, but sometimes, you may be missing something intangible that you cannot add to your suitcase.
I took a lot away from this trip. I realized that sometimes, you don’t realize you need something until you get it. I didn’t realize that I needed something so beautifully random to happen, whether it be fate, destiny, or chance. I needed that random run in with that family.
I felt alone and like no one would understand us in a new place; that our daughter with this rare disease would not fit in and people would wonder. But, running into this family, who have literally walked the same path as us, only showed me that we truly will never be alone in this journey. We will never be alone in this walk towards a treatment, a cure, and mere acceptance of our daughter’s path.
Our suitcase came home with some dirty laundry, some souvenirs, and tokens from our trip. The suitcase was a little messy, messier than before we departed, but it was a suitcase well-traveled. Our suitcase will follow us as we navigate these new territories, new discoveries, and happy and sad times.
While we can plan endlessly for a trip, it may come with some derails and surprises along the way. While we set our expectations high, we need to keep them at bay. Some trips will teach us the hard stuff, but some will show us beautiful things that we never would have seen had we not followed a detour along the way.
