What’s next?

There needs to be a 12 step program for moms who have recently completed their child’s wish trip. Yep, I cried when we checked out of Give Kids the World Village. The elderly gentleman handing me my packet of souvenirs and “see ya later” letter told me they were happy tears. He was so sweet. But in my head, I was grieving. We will never have that kind of carefree, joy and surprise filled trip again. Now we go back to weekly infusions, lots of doctor appointments and an uncertain future. We go back to explaining to everyone that Cooper has a rare, terminal illness. We had such a sense of belonging in the Village. The families didn’t talk medical details. We spoke of joy found each day – whether it was at a theme park or in the details of life at the Village. It was magical and special and uplifting and carefree, and we will forever be grateful to Frank at Baking Memories 4 Kids for our trip, as well as Whitney at Children’s Hospital Colorado for nominating us for the trip. I would have never nominated Cooper for the trip. I was too caught up pretending to be a “normal” family.

I unplugged for the trip. I only posted pictures and wrote about what we did each day. No emails. No meetings. No phone calls. It was freeing and I appreciate the time to live fully with my family.

So now I catch up on emails. Catch up on work. Catch up on paying bills. Now I’m processing what just happened, and how I get from here to what’s next.

What’s next? Hammering out details and travel plans for Cooper’s surgeries in June, diving in to what I can for the MPS Society, and organizing our fundraiser. Spring soccer and baseball are starting as well, so we’ll be taking the kids opposite ways two days a week for the next two months. So in that weird way, I’m comforted we are back to “normal”. But I can’t guarantee I’ll be able to hold back the tears Wednesday when Cooper screams in agony as we access his port for infusion. It’ll be a reminder that we aren’t normal, that we deserved the trip, and that we need to plan more time to be carefree and live in the now.

But as Cooper requested, just one more arcade game before we go:

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