When FIRST (the Foundation for Ichthyosis and Related Skin Types) announced their biennial National Family Conference in San Diego overlapping the same weekend as our first trip with the Children’s Miracle Network Champion Ambassador program in Washington DC, we let our disappointment drive our ambition and wondered “can we somehow do both??”
Illinois to California to Washington DC over a 9-day period? Why not?!
Traveling across the country with two kids on a plane had me all kinds of nervous, I have to admit. We’re more driving kind of people, because driving lets you stop when you want and bring what you want, and as we discovered, TSA agents can get a little sensitive about a medical bag full of Aquaphor.
But thankfully Connor and Brenna traveled by plane so well, I’m now asking “where can we fly to next?!” 🙂
We arrived in San Diego on a Tuesday afternoon with a few days of leisure before the FIRST conference started. It was wonderful to have a little down time to sight-see as a family before diving into our busy conference schedule and socializing with all of our amazing ichthyosis community.
One of the best parts about San Diego for us ichthyosis families was the weather! Every day was a beautiful 75-degrees with a perfect breeze. We did absolutely everything outside – outdoor activities, outdoor dining, even standing out on our balcony when at the hotel!
At the top of our must-do list while in town: the San Diego Zoo!
Brenna was particularly excited to wear her animal prints, and when we got to the snow leopards, she asked “Hi Leopard, do you like my shirt?!”
The San Diego Zoo was very admirable – all of the staff and volunteers were incredibly friendly, and it was obvious they all care deeply about the animals. Brenna’s favorite exhibit: the pandas munching happily on their bamboo. Connor’s: the reptiles, particularly the Komodo dragon!
The next day we got to put our toes in the sand!
Connor and Brenna were able to see the ocean for the first time on this trip – and being at the gorgeous La Jolla beach area, they got to experience one of the most beautiful ocean scenes in the country! The weather could not have been more perfect, and it was such an ideal day all around. With no agenda and no specific plans, we sauntered along, stopping to play in the sand or check out the sunbathing seals whenever we felt like it and grabbing lunch in a cute local cafe.
The Pacific waters were way too chilly for Brenna’s liking, but she enjoyed seeing her brother play in the sand and jump the waves. Connor, on the other hand, had to be torn away from the cold crashing water!
After a relaxing day at the beach, it was time for the conference to begin! Our evening was really special because we got to meet Daniel’s amazing family! His mom almost made me cry as she reflected on Daniel’s birth and adoption, and told me she believes that my blog is a big reason that Daniel is with them today. Reading about Brenna, she said, helped Daniel’s medical staff to realize that survival with Harlequin was possible and that he could have a chance at a good life. What joy it brings me to see Daniel grow up with an incredibly loving family – and such an outgoing and handsome boy he is!
The fantastic thing about being in a rare disease community is that everyone becomes truly like family. Brenna was over-the-moon excited about getting to play with Hunter again – and she even brought up the bond they shared last conference over their eating of scrambled eggs and ketchup!
BFFs. Nose kisses. My heart can’t even take this. I get all the feels every single time I see this photo.
We were able to ask some questions of some of the adults with ichthyosis that we had been wondering about, and we feel so fortunate to have incredible role models who offer positivity and encouragement for Brenna along the way. Like Bailey! Brenna has become a big Bailey fan after Bailey made a video for her showcasing some ballet moves – they definitely share a love of music and dancing! These two even tickled the ivory together one afternoon 🙂
Our last night of the conference, we got to have a pizza party and take a trolley ride around San Diego. We met in person this lovely family who we had only known online before, and our kids just clicked immediately. Brenna wanted to snuggle with Ava during the ride, and Connor and Ava’s sister Bella (who has a different kind of ichthyosis) were inseparable, laughing and talking together throughout the whole two hours.
We were disappointed to leave while the conference was still going on, but we needed to make an early departure because…we were off to Washington DC!
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