Road Trip

When Ron and I first dated we took a few short road trips together. We never thought that road trips would become our only way to travel but it has. This is always one of the areas of our life where the fact that Dylan has SMA can't be ignored. We love to travel and although Dylan's SMA has not stopped us, it hinders us from showing our children certain things we would love for them to experience. A trip that should be a 2 hour flight ends up taking us 2 full days of driving. The amount of equipment, backup equipment, medical supplies, etc for Dylan just makes the thought of flying overwhelming to us. Not to mention the horror stories we have heard from other families of baggage getting lost or wheelchairs getting broken. In order to not have any of that happen we settle for driving. I think I know every rest stop along I-95 (thank you Heather). We are starting to see we need to take a deep breath and let go of some of our fears related to Dylan and SMA.



Celebrating Orestes's 80th Birthday

This Road Trip was a special trip as we visited Florida to celebrate Ron's Father's 80th Birthday. We had a nice time celebrating with Ron's family and the kids enjoyed spending time with their cousins. It was a nice surprise to see Ron's cousins Lissette and Hiro who came in from Tennessee with their children. Hiro was the first person from Ron's family who I met and let me tell you there is not much not to like. He is so much fun to be around, tells the best stories and he's a Yankee Fan. What could be better than that. The kids got to see their first official pig roast at their Uncle Andy's house. Heather had all kinds of questions about seeing the pig which I deferred to her father. We also were able to celebrate the engagement of Andy & Adriana and the birthday's of Michael, Danny, Dylan & the Big H (does this kid's birthday ever end). Ron and I also celebrated our 9th wedding anniversary. It was one big celebration weekend in Miami. Also while we were in Miami we had the opportunity to see Jennifer and her daughter Madison who are part of our SMA family. I love Jennifer. She is such an amazing mom and such a great SMA Advocate.

Playdate with Madison

 

Dylan and Heather at Jacob's Park with Shaina

As we made our way back up north we were lucky to be able to take Dylan to Jacob's Park in Boynton Beach, FL. Jacob's Park was built by the amazing Rappoport Family to honor the memory of their son Jacob Isaac Rappoport who was lost to SMA. When Dylan was first diagnosed Jacob's Website was one of the first ones I viewed. Shaina and Adi were so inspiring to me, doing so much for SMA families while dealing with their own heartbreak. It was very exciting for us that Shaina met us at the park and gave us the grand tour. Dylan and Heather both enjoyed playing at the park. It was especially nice when one of the classes came out and joined in with playing with Dylan and Heather. We were even able to meet Shaina's youngest son, Sam. We had an amazing and unforgettable time and can't wait to visit the park again.

We then took the kids for a surprise trip to Disney. The kids really enjoyed our time in Disney (ok the big kids did too). Dylan and Heather both really love Halloween and had an absolute blast attending Mickey's Not So Scary Halloween Party. Heather was pink Supergirl and Dylan was A-Rod. Of course Heather told Dylan that he needed more of a tan to be A-Rod which made all of us laugh. I think one of the most special parts of the trip for me personally was the fact that Arthur (Dylan's nurse) was able to see his oldest son, Tim, who is currently doing an internship in Disney for college. Many of our nurses are truly family to us instead of people who just work here. I know they not only love Dylan but Heather as well and will bend over backwards to help make our life easier. Throughout the years Arthur has sacrificed so much to help our family. He has really dedicated himself to Dylan many times putting our needs above his own needs so it was great for Ron and I to be able to see the joy on Arthur's face when he was able to see and spend time with Tim. Tim is such a great kid or I should say young adult, a true testament to being raised by two amazing parents.



Supergirl & A-Rod



Arthur & Tim



Dylan and Heather being Heather



There are certain rides at Disney that we can just wheel Dylan's chair right on and one of us sits with him but then there are rides that Dylan would have to transfer out of his chair and sit on one of our laps which is not an easy task and one we have never done. As Dylan is getting older (almost 7) he is starting to get out of the Winnie the Pooh, Small World rides and wanting to go on rides like Haunted Mansion and Pirates of the Caribbean. Of course the Haunted Mansion and Pirate rides are transfer rides. Even though it was a bit of work and stress we made it happen. I sat in a Disney Manual Wheelchair and put Dylan on my lap (vent and all, suction and ambu in tow) and Ron wheeled us down to the ride. The Disney staff was very helpful and stopped the ride so we could get on with all of Dylan's equipment and we were able to go on the ride. Dylan kept saying, Mom,I love you, Mom, this is awesome and it really was. Just to be able to see his eyes light up and know that he accomplished something he really wanted to do made all of the effort worth it. It just goes to show us that sometimes Ron and I have to let go of our fears to allow Dylan to do certain things. It doesn't go without stress but it is so worth it. As Dylan gets older Ron and I need to remind ourselves not to treat him like a baby, we need to do age appropriate things with him even if it is extra work for us and brings us out of our comfort zone.

Another successful Cuevas Family Road Trip accomplished...

On another note, there are so many sick SMA kids out there right now. Seems as though Cold & Flu season has started early. Praying everyone stays healthy and has an easy winter season.