Finally ReConnecting

Why does it seem like the vacation days go by so much quicker than work days?

Patrick, the boys and I took a break and headed to the desert for almost 10 days. We headed out to see the Grand Canyon hoping all the plans for accessible travel were what they said it would be (everything was planned before Wyatt really went off his feet). And it did not disappoint.

Our trip included a train ride from Williams on Route 66 to the canyon rim and 2 bus tours one on the north rim and one on the south rim. The tour guides were amazing and made a point to ensure Wyatt was comfortable and safe. Obviously, not everything at the canyon was accessible but most of it was and Wyatt was able to see all of the beauty the canyon had to offer. Wynston and I even carved out some time to hike down the canyon side a bit. It was amazing!

After the family connection part of our trip, we took the back roads to Scottsdale to join our extended family at the PPMD Connect Conference. Most of our "old friends" were not able to be there with us but we made new connections and were able to be in many of the sessions to learn more about DMD and the hope for new treatments.

I would definitely say the highlight of the conference was Wynston and Wyatt connecting with the younger participants at conference. Wynston found his "sib posse" on day one of conference. Him and 3 girls hit it off and hung out all day everyday. They were even interviewed by one of the pharmaceutical companies. Each of them was asked about what being a DMD sibling means to them, what they have learned from their brothers and what they think about conference so far. Hearing them say that they found their people, the ones who already know the story so they don't have to explain all the daily challenges of having a DMD brother, brought tears to my eyes. My heart was full hearing them each say we have each other's back and we know that we can call each other when we have a hard day because we all understand. All of this strong connection in just 1 day!

Most of the time Wyatt hung out with the "sib posse" too because in Wyatt's words he "wasn't ready" for the teen/adult DMD sessions. It was nice to see Wyatt want to join the group and form a connection with them. It was hard not to push Wyatt to go to the teen/adult DMD connect sessions. I had to dig deep and let him make the decision and the only way I was able to do that was because I heard another mom of an adult DMD boy say, "we as parents have to let them lead and if they aren't ready for something then let him be independent enough to make the decision." So I let go and he chose to go with Wynston and his friends instead and made their own connection. Patrick and my hearts were bursting with happiness.

The 4 kids checked on each other the day they all got home to make sure everyone was able to make it back. They even started planning a meet up later in the year. Those kids found out in just 4 short days what it is to have a tribe that understands and will be there through the hard times which are sure to come. I'm so happy for all of them.

Everyone needs some kind of connection and it was nice to be back in person with our DMD family. Being able to hug, cry and vent in person with those in the same boat has always recharged me for the next year. Not having in person conference for 2 years was hard but it made being back together in person even more meaningful. It reminded me of how important personal connection is with those who are going thru the same things. Next year we will be in Dallas and hopefully all of our friends, new and old, will be there and our new DMD friends from LA will be joining us. We are all stronger together!