Limited……..Only by your Imagination…….Truly Living with Spinal Muscular Atrophy….

It has really been a long time since I sat behind a laptop to write a blog entry……………………… It has been an incredibly busy year for us, and with everything going on behind the scenes I rarely have the time or energy to even write about it. Six months removed from Sophia’s unforgettable trip to Disney World, I couldn’t fathom anything coming close to that experience. Our most recent trip aboard the Disney Wonder Cruise ship this past week was just as amazing!

Sophia is a weak type 1 so flying was just not in the cards for this trip. We decided to make the 4 day drive down to Gavelston Texas, the port where the Wonder was leaving from. It was not an easy drive but we stopped along the way to spend time with relatives along the route. Our first stop was Roanoke Virginia to visit with the Virginia Gaynor family clan. My Uncle Richard was a former Dean of Virginia Tech  and my wife Catherine used to sing Opera in Charlottesville. Catherine became a huge UVA fan while living in Virginia and anyone who lives in Virginia knows there is a great rivalry between VT and UVA. Thankfully my cousin Brianna is an UVA alumni while her sister Ashley is a graduate of Virginia Tech so the sides were even……………..The Gaynor family from Virginia has always been so supportive of Sophia and it was a great opportunity for her to stay with them and to meet her 9 week old cousin Landon. Sophia just adores babies! We had such a good time together and Aunt Jeanie and the girls cooked a wonderful dinner for us. The next morning we had a great breakfast together and we were back on the road. Hopefully we can visit again in the near future, we missed them as soon as we left the driveway.

The next day we drove to Memphis Tenessee, stayed at a hotel…..repacked the van and were off to Grandpa’s house in Denton Texas. The last couple of hours on our drive down to Denton was really a rough drive. I had the van inspected shortly before we left for our trip and had the fluids changed. Sophia’s van had only 19k miles on it so I thought maybe something became misaligned on the drive down. When we arrived at Grandpa’s house I decided to take the van into a local mechanic. Upon inspection they realized the tires had began to separate really bad and we were extremely lucky we did not have a blowout……..yikes! The last few hours of driving were on a 2 lane expressway which was a 75 mph zone loaded with trailers. I can’t even imagine what could have happened at those speeds had we lost one of our tires. The tires were Hankook and they had only 19k miles on them. It turns out a few friends of mine have had the same experience with Hankook tires………We decided to upgrade to Micheline…..well worth the money. Hopefully this will be a learning experience for other families looking to travel to take a much closer look at their tires before traveling and not to take things for granted!

We had a great dinner at Grandpa’s house and Sophia and Jackson really missed him. Grandpa flies up to New York once a year to stay with us and see the kids so it was nice for them to visit his house! We had plans to meet up with Avery’s parents Mike and Laura but the shop had to order new tires for us and delayed our trip a day. We stayed at Grandpa’s house another day. So Grandpa took the kids to a really nice accessible playground just a block away. It was great for the kids to stretch their legs a little bit after all that driving. I think Sophia enjoyed the stay the most……the princess was granted the Master Suite of the house and slept with mamma while Jackson and myself slept in the guest room. The next day we had the van back and we had to repack everything. Catherine really planned ahead and had shipped supplies down for our trip. So much of Sophia’s monthly supplies would just not fit with all of the luggage so we replenished at Grandpa’s house for the next week on the cruise and on our way back from the ship for our trip to New York. As soon as we left Jackson was already saying he missed Grandpa!

That morning we left for Gavelston Texas! We arrived late afternoon and unpacked the van in the hotel room. I was picking up Sophia’s girlfriend Kennedy at the airport and had to make room for another little princess and all her luggage and supplies. It was great to see the Swann family again! I had stayed with them in June when I flew out to California for the SMA conference. We had a great time that night and we were all so excited to board the ship the next day.

As we entered the ship they called out our family names to a round of cheers and applause. It is part of the Disney experience and really sets the tone for the entire trip…….you are treated like royalty from the second you embark. We each headed to our rooms to drop off whatever carry-on luggage we brought,  had a quick welcome aboard lunch and headed to the deck for a fun bon-voyage party. The girls were so excited. Kennedy has a brother Jacob who is 6 years old who immediately became Jackson’s best friend…..they shared a bond as SMA siblings to Sophia and Kennedy and it was great because they knew exactly how to interact with the girls. They were so gentle and kind to the little princesses without showing any signs of trepidation. It was a fun party mixed in with frequent visits to the water slide, kiddie pool and sprinklers……..everyone was having a blast. When the party was over it was time to head down to dinner together and then off to the theater for a broadway like welcome aboard show with the Disney characters……..the kids were exhausted by the end of the day and after a quick glass of wine on the deck it was time to turn in.

We had a Handicap accessible State Room for the trip which worked out great. The doors were big enough for Sophia’s stroller and there was plenty of room and it was actually pretty big for a ship! Catherine and Sophia shared the Master bed, while Jackson would sleep in the couch that rolled out to a bed, and I slept in the fold out bunk above him. Sophia requires a lot of equipment so there was plenty of room alongside the bed for her vent, suction, feeding pump and humidification chamber. The room had two 3 prong outlets, so we brought our extension cord and power strip and had plenty of power to charge batteries and run equipment. The bathroom was spacious with plenty of room to bathe Sophia. The shower area had a fold down bath chair that we put plenty of towels across to make it comfortable for Sophia. ( Thank you Swann family and Ami for the bathing tips)

The second day was an 8 AM sit down character breakfast. Mickey, Minnie, Goofy and Pluto would come around to the tables as you ate and you could see the excitement radiating from the kids. It was so much fun for everyone but we had to run back to the room after breakfast for a quick treatment……..Sophia and Kennedy would be meeting all the Disney Princesses for the first time at the center lobby area. The girls lit up as they met Cinderella, Snow White, Ariel, Belle and Tiana……….to be quite honest the Disney Princesses lit up even more meeting our princesses. Ariel said  “Oh look it’s Kennedy and she has brought a friend”!………….Kennedy went on a Disney Alaska cruise in August and they all remembered her. There was so much teamwork going on between the families….one of us would usually leave dinner, lunch or breakfast early in order to get on line for the meet and greets. Kennedy’s Grandma Claire and Aunt Ami were invaluable on the trip and helped make many of these things possible……they always put the kids first and sacrificed so much to make all of these things possible. When we finished treatment we would head to the spot in line where they were holding for us……The character manager saw the girls waiting on line and came over to our families…….they brought the girls around to the other side so they could meet the princesses first which was an incredibly kind gesture by the Disney crew.
The boys also got lots of kisses from the princesses and after everyones hearts were content we headed to the deck for lunch. After  lunch we headed back to our rooms to get all dolled up for Formal night. The girls put on their gorgeous gowns. Jen had spotted a boutique in in her town in CA that sold beautiful children’s dresses and wanted to pick up 2 dresses for formal night for the girls. After speaking with the shop owner and ordering, she was told that after learning about Kennedy she was so touched she decided to donate the dresses to the girls, Thank you so much Frox and Frolics.  The boys matched each other and Moms and Dads put on their fancy shoes. It was a great dinner and although there were only a few restaurants onboard the menus were different every night. So much of the trip revolved around eating and the wait staff  had welcomed us with their motto “Eat what you see”…….which meant everything and the food was spectacular. After dinner it was Golden Mickey night at the theater which was a red carpet event. Everyone enjoyed the show and were exhausted by the end of the night………time for sleep…..the next day was our first port arrival!

The third day we arrived at Key West and departed the ship for our excursion. We were provided with a handicap accessible bus to bring us all to our excisions. The girls went to a Butterfly Exhibit where one of the butterflies landed right by Sophia’s face and would not leave her side for 20 minutes! When it was time to go the butterfly was reluctantly removed. The boys went to the aquarium, shipwreck museum and lighthouse! We all did alot of walking on Key West and decided to head back to the ship. The boys were starting to get stir crazy so we decided to bring them to the pool for a bit. It worked……they became our sweet kids again! The Disney cruise lines have 2 great areas for the kids….. Oceaneers Lab and Kids Club. Kids Club is a secure onboard park with slides and games where parents can check their kids in to play with all the other kids on the ship. Each kid has a GPS ID wristband and plenty of faculty in the enclosed area. Kids can only be removed from the room by swiping the parents matching room key and by confirming a secret password. I was worried about separation anxiety with Jackson but as soon as we got there to check him in there was no turning back he got a handful of soap and took off racing to the bathroom (they make all kids wash hands upon entrance). He never looked back… be honest it was a little sad for me but I knew he was happy. Across the hallway was the lab which was also a fun area but was more educational with computers and other learning activities such as crafts. Jackson and Jacob would often request to be dropped off during our trip and staff would escort them between facilities if the child requested, upon notifying the parents through wave phones. Whenever the kids wanted to be picked up we would receive a text from the staff. These amenities were great for the trip. If the kids would not sit through dinner we would order room service for the boys and then drop them off so the rest of the family could enjoy dinner together. The boys loved the space………..We enjoyed dinner and picked up the boys for the evening show at the theater.

The next day was Disney’s private island Castaway Cay. The entire Island was gorgeous……crystal clear turquoise water where you could always see the bottom. Fish were perfectly visible as they swam around your feet at the beach. Catherine and Kennedy’s mom Jennifer went for much deserved 75 minute massages in the cabana on the beach where they listened to the ocean as kinks were worked out. When they were done they met up with us all for a BBQ on the beach. After a beautiful and relaxing day we headed back to the ship for dinner and the Woody and Buzz show at the theater. I do not know of a more pristine and relaxing Island than Castaway Cay…….Disney once again knocked it out of the park!

The next day was the final port arrival at Nassau in the Bahamas. The site was gorgeous as you pulled into port. Once again beautiful and clean water surrounded you. It was very emotional for me to look out from the deck and to see this Island. When Sophia was diagnosed I never imagined she would ever set foot on the Bahamas. I never thought I would be able to call her my Bahama Mamma. We have done so much in her short life but I thought we were restricted to doing everything we could do in the continental United States. That since Sophia cannot fly we would only get to share with her the world that we could drive to. That all changed when I looked out from this ship………my girl was in the Caribbean! We had handicap accessible vans waiting for us at the port and we headed to the Atlantis resort. We had a surprise waiting for the girls. They started to realize something was up as we put them in wetsuits. We all got dressed and headed to the beach………..The girls would be swimming with Dolphins………….want to see a grown man cry?

This was a major undertaking and all so worth it……an opportunity of a lifetime for most people but beyond comprehension for an SMA child. We planned this one out thoroughly. We brought with us our princess body board which would support Sophia’s head in the water………Salt water and $20k ventilators do not mix very well so we would have to leave Sophia’s machine on the beach. We gently disconnected Sophia from her life support system and carried her to the water. Daddy was kneeling in the water and Sophia was placed in his arms. Mommy would have to use the ambu bag to breathe for her while in the water. Kennedy’s Aunt Ami would help Sophia move her arms and hands to interact with the Dolphin……we were all set and Brewer the Dolphin was patiently waiting to meet Sophia just inches away. Aside from the attention Sophia needed this could not have been possible without Brewer, a very kind and gentle Dolphin who had one quality that none of the other Dolphins had there………he was a shallow water Dolphin. Brewer had the ability to swim up close to shore in less than 2 feet of water to meet the girls. He stopped just inches away from the girls and Sophia with the help of Ami was able to pet him, rub his face and finally…………to kiss Brewer. The emotions cannot be put into words…but I am sure you could imagine…………….. When Sophia was done, Brewer backed up a little and began to speak to Sophia with his voice. It was absolutely amazing. Kennedy was next and that little girl maximized everything. She was so confident and strong in the water…..she showed no fear as she met Brewer, gently petting him, kissing him and just loving on him. Kennedy did not want the time to end…..and she enjoyed everything to its fullest……………..The rest of the family members all spent some time with Brewer and at the end Brewer showed off for the girls with a goodbye swim loaded with jumps and flips……..As we all walked back towards shore…….it was absolutely one of my proudest moments in life……I am sure there were 11 other people who felt the exact same way I did……….this was an experience of a lifetime! After lunch on the Island we headed back to the ship for a dinner and a late night Pirate Dance party on the upper deck. It was an amazing performance loaded with Mickey flying down from the stack to the deck and fireworks at sea (Disney is the only ship with that license)

The next day was Halloween on the ship. We did not want the kids to miss out so we had 4 rooms onboard and the kids visited each room twice trick-or-treating! That day the kids had another meeting with the Disney Princesses and that nights show was the Disney Dreams show. A spectacular show which was probably the best show on the trip!

Our final day at Sea Kennedy was not feeling 100% so spent a lot of the day resting.The family did some “feel better shopping” for Kennedy and dropped off gifts to her room.  Catherine and I did a chocolate pairing with wines and liquors while Jackson was at kids club. Sophia came along for the pairing in a private room with less than 50 people in the room. She was very vocal while we were there…… and always when everyone else was silent……this girl always knows how to liven the atmosphere. The pairing was very interesting and my favorite was a parmesan cheese with a 20 year port wine. After the tasting we had lunch and we picked up Jackson. We headed to a private Tea Party, Kennedy was supposed to attend the Tea Party but family felt she should rest more. We went with the kids where Jackson was chosen to dance with Tiana. Sophia loves Tea Party’s and is very familiar with them since she has them with Daddy all the time! Sophia spent time with Arial and Tiana, it did not feel right without her Bestie Kennedy so she asked Ariel to Videotape a special get well message for her (which she did )  and then it was time to head down to the theater. The kids went on stage for a farewell show with all the other kids from the ship. I was backstage in case Sophia needed any assistance. While backstage the Cruise Director pulled me aside. Prior to the final farewell to the characters, there is a private 30 min party with all of them from the ship. Of the thousands of people on the ship there are only 5 to 6 families chosen by the staff to attend. The staff chooses families that have touched the crew and staff the most during the prior week. Sophia and Kennedy were chosen to attend. It was so much fun and it was great to see the kids light up one last time with those magical expressions in their faces. We were all very moved by the extremely personal touch the characters showed our kids. It was a great way to end the cruise. The next morning we had a quick breakfast and disembarked. We had 4 days of driving ahead of us……….and would not think twice about making that trip again.

We share our experiences in the hopes of inspiring other families to continue to try new and exciting things for their kids. To experience things they never thought were imaginable after an SMA diagnosis. With some preparation you too can make these experiences a reality for your child. . Everything is located right there for you and if you need any supplies or equipment it is a quick trip back to the room. A cruise with another family allows you to bring less equipment……there is not the need to bring back-ups for everything since the other family most likely has the same equipment such as a cough machine in case of an emergency. It also lets you take comfort in knowing there are other people on board who can assist in case of an emergency. I want to personally thank the Swann family for a wonderful time together. Thank you Ami and Claire for all of your help…….we could not have done this without you! We have already booked our next trip for next year and are excited to be bringing Uncle Mike to help us! All in all our girls enjoyed holding hands blowing kisses at each other and sharing all the adventures!!!!!!!!

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