National CF Conference + Cali Baby

This year, Phoenix hosted The National Cystic Fibrosis Conference. We were so fortunate to be invited to attend the volunteer sessions, as well as one of the plenary sessions, which had over 4,000 attendees, most of them were scientists from around the world. The night before the conference kicked off, we were invited to a cocktail hour and dinner that was hosted by our Arizona Chapter. We love our director, Nicole, and the whole team of people that work so hard for our boys. Our chapter has evolved over the eight years since we joined “the club” are we’re so thankful for the great strides that have been made locally, as well as nationally.

The three days that we spent involved with the conference were such a blessing…and a little overwhelming at times. Jeremy and I kept saying, “I can’t believe we get to be here right now.” The conference had an added emotional tenor, because Dr. Robert Beall, the President and CEO of the Foundation was handing the baton onto Dr. Preston Campbell. We were at three different parties where he gave his “farewell” speech, and there wasn’t one that we didn’t have tears over. When you hear stories about how a man has sacrificed his own life and poured his heart into the science behind something that will maybe one day give your boys freedom…words of appreciation feel petty. But, truly, our hearts are so thankful for this man and all he’s done to plow the road, and lay a firm Foundation for his successors.

We left the conference with real hope. We pray this hope becomes a reality. Like. Tomorrow.

After the conference, we took off for our family vacation to San Clemente with our friends. San Clemente will always be a special place to us, as we now have so many years of memories wrapped up into that little beach town. Heading into this trip though, right after all of the emotions of the conference made things a little more challenging. The amount of equipment, supplies, medicine, food, and consideration the boys need to manage the disease is a lot. While we were there Asher’s new vest ripped open, Asher’s airway clearance machine started malfunctioning because of the humidity, and I spent a lot of time on the phone with pharmacies and our insurance because we forgot one of the boys meds. The reality of the disease quickly set in, and the feelings of hope and things being different for our boys felt so far away. We were still so thankful to be able to have this trip, and we filled our buckets with awesome memories together! Sometimes there’s an ebb and flow to the emotions in caring for two children who are chronically ill…but we will not let this disease stand in the way of our boys having wonderful childhood memories…and God’s grace is sufficient. He always carries us through.

The weather in Cali was hot, but it made for beautiful ocean temps, and gave us a plethora of gnarly boogie boarding memories!

God gave us a beautiful sunset for our sunset walk on the pier!

We took a little trip to ride the fairy and visit Balboa Island. So quaint and cute!!

We told the kids that we were going to take them to Knotts Berry Farm before we left for California. That led to watching videos on just about every ride they have at the park…multiple times. Beck was convinced, and beyond excited to ride the “Octopus Ride”. That’s all we heard about for 40 days. Asher was just looking forward to riding all of the big rides, because he was going to be tall enough to ride all but a few. We had to make countdown calendars for the boys. Here’s Beck, trying to be patience for the Octopus Ride :).

What’s crazy is that after all the build up, we finally get to the Octopus Ride, and it was closed down! Thankfully we only had to wait a few hours for it to open back up…and Punkie’s dream was made :). He was stoked!