Day 3|5
Thursday August 2nd

San Diego Zoo + Stage Performance day!

After an emotional day before, it was nice to wake up refreshed and look forward to a fun, relaxing day. They had planned a day trip to the zoo for family’s that were interested and we weren’t going to miss it! This was also the first day that we got to meet more families, most which were traveling in today. They had a zoo day planned out for any families that wanted to go. I remember feeling sad that our trip felt like it was ‘almost over’ until I realized it had just begun! There was still a lot in store for us and we were so excited, but little did we know another and even more emotional day was ahead.

Owen woke up super early (surprise, surprise, Sanfilippo.) I took his cpap mask off and had him jump in bed with me for a bit longer to cuddle. But then he fell back asleep and didn’t want to wake up when it was actually time, ha.

Day 2|5
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.

This year, our local Junior High Cross Country captains have chosen to run this race in honor of Owen and his journey with Sanfilippo Syndrome MPS IIIA. This was their annual Alumni Run. Our Jr. High runners get their first (practice) 2 mile race and they open it up to all of our alumni, friends, family, and the community. This year, they have chosen Owen as their angel to help and they invited the community to come out in support of Owen and our family and wanted to help by increasing awareness.

This was Owen’s first fundraising event and we are so grateful for the people in our life that took the time to come out for an hour or two and be a part of it with us. It was a smaller and more intimate one and we are so lucky to live in this close and giving community. More shirts and bracelets were sold to those who wanted to help spread awareness and we had so much fun with family and friends.

Day 1|5
Tuesday July 31 || Travel Day

We were ‘flying high’ today in Owen’s Story!
Today we have been in route and made it to CALIFORNIA to attend The Symposium for MPS! It’s a HUGE convention they hold every year at a different location (this year its international!) where we get to meet new families, learn even more about our future + be surrounded by ‘our people’ + we are SO excited!! Owen will attend Camp Courage while we are here for 5 days, playing with other peers and people that understand him and his needs during the days while we attend the meetings, spend time together as a couple and with friends. There are so many fun activities are planned!!

One of the evenings we are here, there is a welcoming ceremony and Owen gets to go up on stage to represent MPS III. It is celebrated as a “Superhero day” for anyone who wants to wear a superhero shirt of any kind to represent our amazing babies. You can wear anything, Superman, Batman, Spider-Man, whoever your favorite is… but of course, I couldn’t resist my creative juices that flowed straight into wanting to create shirts for Owen as a superhero!

One of our recent trips this past week to the doctor has included getting Owen’s breathing issues checked out. He’s always been a heavy breather. Always. I remember when he was a newborn, I had to take him to get his hearing checked since he didn’t pass the hospital hearing test. We finally got him asleep, as he needed to be for the test, and they still were unable to do it because he was ‘breathing too loud…’ Um, what?! Sorry that’s just how he was, I couldn’t do anything about that. He has passed all of his hearing tests since then, but 8 years later, here we are.

So, through all of the different types of tests we’ve been doing, one of them was focused on more when I brought it up and then his allergist helped to follow through and started looking into his breathing. Owen has very restless sleep (which is also common with MPS) but I wanted to make him as comfortable as we could so I wanted to look a little deeper. He had a sleep study done a few months back that showed he had moderate to severe sleep apnea for a child. He moves about every 10 minutes or so (as we are able to catch on his camera here at home) and during the study, it showed that he stops breathing for more than 10 times in the night for about 8-10 seconds each time. (Um, yikes.) The doc said with him being monitored, they could measure things that the eye can’t see. Things such as some of the moments that he may look like he’s breathing but nothing is actually coming out for those 8-10 seconds, his airway is about closed. His tonsils were checked out after his sleep study and were not even close to being enlarged, so there was no surgery needed there. We found out his airway is a tad smaller than normal, which makes him breathe heavier through both his nose and mouth to get the extra air in. If I had to describe it to you, at times, he sounds like Darth Vader from Star Wars, ha. Poor kiddo. He would sound like this just laying on your lap watching a movie, and without being able to see his face clearly, you would think he fell asleep. That’s how deep and steady sounding his breathing is.

June 9, 2018
It was a rainy, icky morning. Randy and I woke up extra early to start packing and made everyone lunches. We had to travel about 3 hours to get there, so we were hoping and praying that the clouds and sprinkles of rain were going to subside. There was a whole day ahead of us of walking around the zoo, planning to meet with doctors, listen to a few speakers and it was a great opportunity for us to meet other families. With all of the emotions already building up, all we needed was the sunshine to kick start our day. We packed up the car, woke the other babes up and got on the road! Owen was riding with his dad and was meeting us there, so the other kids enjoyed being able to sleep on the way… and I was of course a bit happier and awake once I grabbed a fancier coffee than my cold cup that wasn’t even touched at home and was able to sit in one spot with nothing to do for a moment, ha.

I’m still numb from it all. But my heart is exploding! I still look back on all of the happiness the community gave to us on that day and it is just beyond amazing. I’m forever grateful of our first year on awareness day, in celebration of our sweet boy.

I woke up feeling like it was Christmas morning. I told Owen the night before that so many people and all of his friends at school was going to wear purple for ‘Owen day.’ And even though he doesn’t understand what is going on, he was so excited. Oh, there were so many emotions. So many. Happy ones, confused ones, devastated ones. You name it, I had it at some point throughout the day. But I kept reminding myself that this day was for a celebration! We made it, we have an answer for him! He is happy and I’ve worked SO hard for THIS day for him!

There’s something so weird and so different and so hurtful that comes with receiving a terminal diagnosis and grieving over your child who is still alive. But at the end of the day, grief is grief. And everyone grieves differently and all kinds of feelings need to be taken into consideration.

We heard the news on Wednesday May 2nd. We saw the genetic doctor and it was confirmed on the 3rd. In the next couple days following, I had set up a Facebook page for him, a YouCaring donations account and signed my sweet boy up for the Make-A-Wish Foundation. I remember naming his page and choosing his profile picture and had to just walk away. That’s all I could do for one day, it was all the strength I had in me. And I know that sometimes all I will be able to do in one day as time passes is a single thing, and that’s okay too. It all happened so fast and was nothing short of a nightmare. I didn’t understand what was happening and I still feel like I can’t wake up from this dream. I can’t believe that it’s even real. No one wants to think about setting this kind of stuff up for their kids. And no one should ever have to. But it does happen and it’s happening in our home, so I’m here to share Owen’s Story with all of you. I keep reminding myself, this is real. This is my life, chosen for me and I can do this. I need to do this, for HIM.

After six years of searching for a diagnosis, we are here. About a month before his 8th birthday. We got the phone call on Wednesday May 2, 2018 at 9:40am. “It’s confirmed. We’ve received a positive result and there is no need for any further testing to be done. This is your final diagnosis.”Those words, ‘This is your final diagnosis.’ Final. Diagnosis. Those are the words I’ve been waiting to hear for six whole years. My heart sank while an entire load of weight lifted off of my shoulders. I felt like I was flying. But only for a moment…

You are capable.
You are worth it.
You are strong.
You are so incredibly talented.
You are the only one who can limit your greatness.
You are enough.
You are the only you.
And goodness, you are way too smart to be the only thing standing in your way.
Let go of that dang fear!

You were created to be outstanding.
Now go and be the best you can be.