Wednesday August 1
We slept well, woke up being silly and in a happy mood. Today was the first big day of our trip and we came earlier than some families to be here for this day. Today’s conference was ‘Sanfilippo day’ and since Owen’s type of MPS is one without treatment and a little different than some of the others, it was nice to have a day that was dedicated to learning more and just concentrating on us before the rest of the week’s knowledge came rolling in.
The boys sat on the porch for a couple minutes while I walked around the room and gathered some things together for the day ahead. I peeked out to see them looking like this and just watched them for a moment. After O was giggling I walked out and asked what they were pointing at and he thought it was silly that the moon was still awake in the morning.
Fun fact: Owen loves the moon. He always has.
We had some time before we needed to be down to the conference room to start our day so we decided to take a nice, long walk around our marina area. It was still so early and cooler out before the mid day hot sun hit and I can’t remember the last time I’ve gotten to go on a walk. I wanted to keep walking all day, it was just so enjoyable where we were.
Owen walked most of the time, but it was nice to allow him to ride along after a while so that we could go even further and just take it all in.
After our long walk, we went back to the hotel to freshen up for the day. I ran to Target with a friend to get some groceries for us to have in our hotel room so we didn’t spend a ton of money on food through the week. While I was gone, the boys ate left over pizza for lunch, rested a bit and got ready for the day.
Today was the only day that they didn’t have Camp Courage for the kiddos to attend, so we were a little nervous how Owen would do during the conference having to sit with us the whole time and listen through it.
Lucky for us, he was still getting used to the time change, and after that long walk, he was tired in minutes of entering the conference room. He ended up sleeping the first whole hour and a half and was content the last half hour.
They showed a film some parents and producers put together on Sanfilippo Syndrome that they showed to start off the conference, and of course I cried during the whole thing. I am thankful that Randy took these photos of us here. It was a very emotional moment and Owen had already fallen asleep on my lap. I remember looking down at O and looking over at that wall beside me many times throughout the film so that all the other parents in the room wouldn’t see me ugly cry as tears rolled down my cheeks, lips and neck.
But then I remembered that we were all there for the same reason…
After our bestie Leslie woke Owen up (hahaha just kidding Les!) we made our first friend of the trip during a short break, Lulu. She is five years old and has the same type (MPS IIIa) just like Owen. They became best friends instantly and saw each other multiple other times during our trip together. Owen just adored her.
After taking a break, we sat back at our table and got O all settled in to sit for last few minutes of today’s conference. Those headphones, again, are a genius invention… except when your child can’t hear himself sing his favorite songs. So everyone in the room heard bits and pieces of his favorite show’s theme songs once in a while and there was nothing we could do but smile and try to quiet him down a bit.
They all get it. I didn’t have to try and explain. And I think it made some of them happy to hear too.
He colored his new friend, Lulu a Toy Story picture to take home with her too.
After our meeting was over, we met up with a few friends in the halls to mingle a little and got to meet some more families.
Kris is one of our good friends that we’ve made and has been so helpful through our MPS journey thus far and her son’s favorite friend was Barney. She takes him everywhere with her on these trips as a memory of her boy. Owen loves Barney too, so now whenever we see Kris, he always asks to see him too! Since George got to come with Owen on our trip, him and Barney became good friends too.
The other friend we got to meet today day was Luke. Luke is 18 and was also there for Sanfilippo Day. It was just so fun to watch these two interact and talk to each other. Your mama heart just melts when you are able to see your child connect with someone else and not be judged. They loved Owen’s laugh and Owen thought a lot of things that Luke said was funny! It was a fun afternoon and so nice to get to know this family. But seeing Owen so happy and smile so often was the most comforting thing. It reminded us constantly that we were right where we were supposed to be.
After everyone parted ways, we walked around the marina outside for a couple minutes before we decided to go swimming. I got in the pool as well, but the boys were having so much fun together that I called this ‘the boys night at the pool.’ They were so cute to watch and the sunset to end our first full day in Cali was perfection.
Day 2 had me so excited to see what the rest of the week had to offer.