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:

I can’t help but think we’re approaching the top of a roller coaster ride right now. Things are really, really good. (Yep, I actually knocked on wood as I typed that.)

We’ve got Cooper’s wish trip coming up. Only a few days until we leave for Walt Disney World! Cooper has been marking days off the Calendar since January 1st.

To say we are thrilled is an understatement.

But that’s not the only thing going on this week – yesterday at the hospital we celebrated Cooper’s 5 year anniversary of being on VIMIZIM, his weekly infusion. And ya know what he got to do? Ring the Warrior Bell. Yes! That Warrior Bell that was only for the kids done with their chemotherapy. The celebration was the brain child of our FABULOUS nurses and child life staff at the hospital. I’m afraid my words and pictures won’t do it justice, but I have to share how loved and special Cooper (and the whole family) felt today. It’s just too good not to share.

If you’ve seen pictures of us at the hospital, there’s a good possibility you’ve seen Cooper playing hockey in the hallway – while hooked up to his infusion and my dad nimbly following Cooper and maneuvering his IV pole through a hockey game. This is Cooper’s favorite activity right now – whether it’s at the hospital, in our basement, in our backyard, in Grandma’s kitchen or Great-grandma’s back porch. HOCKEY ALL THE TIME! So of course our Children’s Hospital friends not only named the infusion center “Cooper Stadium” today, but there were goal creases, two blue lines and a center red line in our hallway today. It worked perfectly, because we brought 2 goals, 8 hockey sticks, Cooper’s set of goalie pads and 20 friends. GAME ON.

Check out the epic Hockey game here

We paused the hockey game for a bit so that our hospital friends could surprise Cooper with the ceremonial silly string, a gift, cake, and even a “Zamboni”!!! Or close enough to a Zamboni – the machine they use to clean the floors. Cooper loved his ride on the Zamboni around the infusion center! (If you look closely, you can see Cooper’s room in the background, with a sign that says “Cooper’s Penalty Box”)

Then it was time to do what has always alluded us – it was time to ring the Warrior Bell. The inscription on it had been personalized for us today. The words were PERFECT.

I’ll spare you the video of me trying to read this out loud, but I’ll promise you it wasn’t easy and the next time, I’m going to go to the bathroom and practice it a minimum of 10 times before it’s time to do it in front of everybody. Then maybe Cooper won’t get embarrassed that mommy is all choked up, and he’ll want to proudly ring the bell instead of bury his head in my arms. But I’m OK with that. It’s who we are and where we are in our journey – still clinging to each other when we are scared.

So we moved on to the cookies mom made and the cake. We laughed and the kids played more hockey and we finally left. As we got into the car Cooper proclaimed, “That was the best day ever!”

But of course we didn’t go home, although I was emotionally spent and just wanted to hide under the couch. We went to Chic-Fil-A because Cooper LOVES it and it just so happens that it was our elementary school’s night there for a fundraiser. So we went and ate delicious chicken, visited with friends, played in the playroom and was immersed in our community.

Even this morning, Cooper came running out of his bedroom, carrying the balloons that were on the Zamboni, singing “I’m so happy! I’m so happy!”. My jaw is sore from tensely clenching at night, worried and anxious for Cooper’s upcoming surgeries this summer. But for now I’m going to be mindful of where we are at NOW and soak in the happiness.