We just got back from a whirlwind trip to Los Angeles and I feel like everything that happened was all kind of surreal.
A few weeks ago our short film
Joubert Syndrome: The Unexpected Journey was picked up by the Love What Matters Facebook page. This was a big deal to us because that page in particular has over 2.6 million followers and people that view the page. What a great platform to raise awareness worldwide! And so far there have been over 66k views of our video!
Shortly after that, a producer from The Doctors TV show reached out to us to see if we would want to come on to raise awareness and have a national platform to share our story. We jumped at the opportunity, and before we knew it, Nick, Parker, Lane and I were on an airplane heading down to LA. We left Elyse with grandma for the weekend since we wanted to make sure and focus on the boys and their needs during the trip.
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| These Ninja Turtles came in clutch on the airplane! |
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| Layover in Portland on the way down. |
We've felt a passion and a calling that God has given us a story to share and whatever doors he opens to do that, we would follow. Not only are we wanting to bring awareness to a rare genetic condition, but also hope to people facing unexpected circumstances. We all have things in our lives that are different than we imagined or "unexpected" if you will, and we feel that it's important to share that there is good that comes from the unexpected and hope through it all.
So the night before we left, we were packing and I looked at Nick in such a surreal moment and said "Is this really our life?!" It just seems like we have been wanting something like this to happen for so long, that when we were really doing it, it felt so surreal!
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| Breakfast our first morning. Coffee Bean & Tea Leaf is my fav! |
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| All snuggled up!! The boys shared a bed the whole trip and did amazing!! |
They put us up at the Hollywood Roosevelt hotel, which is a hotel right in the middle of Hollywood. The sidewalk outside the hotel is literally the walk of fame with the stars in the walkway and a lot of the iconic Hollywood places are right there. You could even see the Hollywood sign from our room. That was all pretty fun!
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| View from the window |
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| Exploring Hollywood |
I have to say though, Hollywood in general is pretty underwhelming. It's all very close together and packed and a lot of the production and things that you see on TV are not nearly as glamorous in person as they are on TV. But we enjoyed the novelty of it all and a chance to have a once in a lifetime experience.
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| Outside our dressing room |
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| Behind the scenes in our dressing room |
The morning of the taping, we were picked up in a van and got to the studio a few hours before taping. Hair and makeup came in to touch us up and make things look good for TV, wardrobe came and grabbed our clothes and got them ready, and then we signed papers, talked through the script and got mic'd up for the segment.
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| Even Nick got makeup! |
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| touch ups! |
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| Had to get a close up of my Stella & Dot I rocked on the show |
I have to say, when they mic'd us up, I felt like that was the weirdest thing ever. Like we were so official or something! The boys even got mic'd up with these little bitty mics..it was pretty cute! The boys did pretty well with all the people coming in and out and were surprisingly calm and cooperative with all the commotion.
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| With my handsome Lane! |
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Parker getting mic'd up
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| Auntie Hannah keeping the boys entertained |
They took Nick and I out a few minutes before our segment and the boys stayed in the dressing room for a few more minutes. Luckily, we had my sister in law Hannah there with us so she stayed with the boys and was a familiar face.
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| All ready! |
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| Selfie! |
Walking on set was crazy but I never really got that nervous. I kept thinking I was going to get super nervous but I really had such a peace about everything. We met the doctors who were going to interview us and we got in our seats, and before we knew it the audience was clapping and we were starting. We were probably out there for about 10 minutes but it felt like 10 seconds. The time flew by and there were some pretty great surprises and generous donations to us and the foundation. The segment focused a lot on hope and staying positive despite our unexpected journey as well as on the specific therapies and equipment the boys need n a daily basis.
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| Just a preview of some of the surprises!! |
As soon as we were done, we took some pictures, packed our bags and were headed back to the hotel. We had some friends come up for the taping and we all went out to dinner after and then spent a few days after with family and friends in the area.
We loved our experience and are so thankful to have had this incredible opportunity. Nick and I love being able to do this together and cannot wait to see what the future holds for us and the boys as we continue our journey.
Thanks to you all for following our journey and supporting us through it!
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