Nicky’s Wish

OK, so this blog is a lot longer than I intended to… but how do you sum  up the time of your life? This is a trip we’ll never forget. Thanks to everyone that made it possible!

As many may imagine, Nicky’s life is full of pain. Medications to alleviate pain, to soothe the skin, to help bowel movements and to relieve itching are only a part of the puzzle. There are the nightly bandage changes, the difficulties of walking due to his wounded feet, and the nightly g-tube feedings. Everything is difficult. Everything is a challenge. Then, of course, there is school, Doctor’s appointments, Iron infusions, trips to CHLA… and the list goes on. How do you give a child in this much pain some joy?

We had used our ‘Make-A-Wish’ 11 years ago when Nicky started kindergarten (which I talked about in my last blog), so I never thought we could benefit from it again, until… a woman from the Scott Ward-Schofield Memorial Fund contacted me. This Charity was formed to raise awareness for Epidermolysys Bullosa and arrange and pay for holidays, short breaks and special days out for sufferers and their families/carers. Until there is a cure for EB, they want to provide lasting memories for these special families whilst there’s still time for them.

Nicky on the Rhapsody of the Sea still docked in Seattle before we sailed.

I was happy to help this woman spread the word about her foundation and then several months later she asked me if Nicky had in mind a place to go for a vacation. “Oh, I don’t know” I told her. Nicky was having his hand surgery at the time and things were hectic with my school, so I kind of let it go, but when she asked me again several months later I went and asked Nicky if there was a place he wanted to go.
ITALY was his answer. Oh silly boy! I know trips to Italy are not exactly cheap, but the reason why I can save for them fairly easily and afford to go somewhat frequently (every few years) it’s because the airfare is the only thing I have to worry about. Once I get there there is no hotel to pay, or even food to buy as far as that goes. That’s the perks of having your family live there. Actually, Nicky (and Connor) want to move there, and we will once Greg retires, but that’s a whole other blog.

I told Nicky I was already saving for our trip to Italy in 2015, we were going no matter what, so ‘where else you would love to go’? His answer, with a serene expression on his face was…. ‘somewhere COLD please!!! Somewhere COLD!’.
Somewhere cold… hmmm… We live in California so the closest cold place to us would be Alaska. As I thought about the logistics of the trip itself I honestly felt a cruise would be the easiest thing for him to do. He would not need to get out of his chair at all until he went to bed. He could cruise the whole ship in his wheels. He would not need to get into a car to go from point A to point B, even in and out of the ship would be a breeze if we got a shuttle with a wheelchair lift. He loved the idea, so we put in the request, which was approved a few months later. We were ecstatic!!

Nicky with the head waiter that was so wonderful to him

I could write a mini-book about our trip and I posted a TON OF PHOTOS on Facebook, but let’s see if I can explain what this trip meant to Nicky and to us as a family…
For starters, I could go on and on about the staff. We were on the Rhapsody of the Seas which is a ship from the Royal Caribbean fleet. Everyone was amazing. The waiter spent oodles of time making sure Nicky got what he needed, and they were more than accommodating in the Windjammer Buffet area (they would even bring drinks to us which is not something they usually did), bring extra garbage bags for bandages and Nicky’s stateroom which he shared with his dad was very wheelchair friendly, even bigger than his own bedroom in our house! When you think that the stateroom I shared with my husband and Connor was so tiny he could not even get his wheelchair inside, you may understand how comfortable his quarters were, and I was immensely grateful. Because Nicky shared his room with his dad, most of the nightly routine of getting Nicky ready for bed fell on his dad’s, which I appreciated immensely. We alternated bandage changes so some nights I did not have to do bandages at all and allowed us time to go see the various shows on board, it was an amazing relaxing time.

I must say we all got a really great good night of sleep and the beds were very comfortable! I don’t know if the lulling of the ship had anything to do with it but it was great! The only real TV channel that we could watch was CNN, and to be honest, I avoided it. I wanted NO NEWS! I only wanted peace of mind. I kept checking to see if Kate (Middleton!) had her baby and that’s about it. What I thought was hilarious was that on the channel lineup in the stateroom one of the channels was in Italian! Some E! News Italian channel of some sort. You mean I have to be in the middle of the Pacific Ocean to get an Italian Channel? LMAO!

Connor had a great time as well. After a few days we felt comfortable having him move around the ship for brief periods of time if he went to get something nearby or to go where Nicky was. He had his own stateroom key and was so proud of it! He even insisted on making coffee for me because he stated ‘I have to learn’. He has tons of energy and I am glad I had him to do things with because Greg was not up to do much running around the ship due to his problems walking and with his arm, so Connor and I would go around to the various Art Auctions, Shops, to get Ice Cream and swim in the heated pool. Nicky mostly hung out with his dad and spent time playing Bingo and in the game lounge on the top deck.

Nicky in Juneau, Alaska!

What to say about the Ports of Call? Alaska this time of year has 19 hours of daylight so it seemed that night never came. For our first port, Juneau, we did the Tram and it was wonderful. It was a chilly rainy day and Nicky LOVED IT! The guy that drove the shuttle that took us to the tram thanked us for bringing warmth to the city and he wasn’t kidding! He said it was usually colder than this and rained harder. Ha ha. At the top there was a nice trail area but we mostly watched the movie which was spectacular.

In Skagway the next day the sun was shining! We were warned that the White Pass Railroad train would be a bit too bumpy for Nicky so  we opted for the Motorcoach/Bus. When it came down to it, Nicky was tired and didn’t feel like going on the tour with us, so he opted in spending time with his dad in downtown Skagway which is a dead ringer for a frontier town! If someone had dropped me in Skagway and asked me to ‘guess’ what country I was in, US would have been my first and only choice!

The Dawes glacier the following day was absolutely stunning and Nicky’s favorite stop. Well, the ship kinda stopped. As it slowly got to it then started making 180 degree turns so everyone could see it. I could not believe this enormous ship could just do 6 revolutions like that!! Blew my mind!

Our last port of call was Victoria, BC (Canada). As we were docking into the port I could not help but think I KNEW I wasn’t in the US! Being an avid fan of Europe (naturally!), I knew this had an European flavor and I loved it. For this stop we got a bus with a wheelchair lift and the driver took us around the major spots. I must say, I would have loved to get off the bus in the downtown area and walk around for hours. The area was so amazingly beautiful, I was mesmerized! There was so much to see and do, but there was no way I could force my husband-or Nicky- to do this and promised myself to come back here at some point in the future with ‘girlfriends’. Someday.

Nicky and Connor on the Space Needle, Seattle.

We docked back in Seattle early Friday Morning. We got on a shuttle to the hotel and planned to spend the next couple of days exploring the city, with our flight leaving Sunday afternoon back to Los Angeles. The hotel staff was really amazing, they told us that the cheapest way to get into town (since we didn’t want to pay the $95 fee we just paid to get to the hotel from the port) was to take their free shuttle to the airport and then get on the rail. A roundtrip on the rail for all 4 of us was $15!! While it wasn’t the most pleasant of rides, we made it through, but the first day Nicky got blisters on his bottom due to the bumping. The next day I put a thick soft blanket on Nicky’s chair when we went to the Aquarium and that helped immensely. Both our trip to the Space Needle on Friday afternoon and the Aquarium on Saturday were tons of fun and the manager of the Cafe’ at the Aquarium even offered us a free meal! I wanted to cry. Part of me is thankful beyond words, others I think how pitiful we must look. Nicky’s all bandaged up, my husband can barely walk, I guess I should care what people think, but I just don’t have that kind of energy. It is what it is and I am always grateful when people show they care by buying lunch for us, but also for those that stopped to ask me personally about Nicky. One British guy approached me on the ship and asked me, very politely, if I didn’t mind him asking me what was wrong with my son. Nicky wasn’t even with me at this moment, so I asked him if he meant the one with the bandages-he said yes. When I told him he was amazingly gracious. Another guy at the airport approached me while security was checking Nicky and asked me about him and he said that his son had some kind of disorder and he felt for us. He kept saying ‘wow’ with an amazed look on his face and tears forming in his eyes.
It’s at these moments that I feel our lives mean something. We matter. Nicky matters. I don’t know how long I will have him for, but he matters.

Nicky and I at the Dawes Glacier, Alaska.

As fun and truly grand this trip was, logistically speaking, for me, it was a little bit of a nightmare. LOL. I laugh about it, because it’s all I can do. I wanted my family to enjoy the trip (I ordered everyone to have fun and I had a rule of not complaining about anything, ha ha) and if I am the only one that can pack bags for 4 people including worrying about the airline rules, carry all the luggage and become Julie McCoy (that’s what Greg called me. Get it? She was the cruise director of the Love Boat, ha ha) and plan everything we go and everything we do, I do it and I am going to enjoy it, damn it!!! Nicky does not call me SuperMamma for nothing I guess, I only know I do what I gotta do.
However, I did have help. The Foundation paid for 4 (very expensive) cruise tickets and in the end I wanted my husband to go as well since he ‘could’ go now (he could not go when I requested the wish for Nicky and I would have felt horrible leaving him behind now) and that’s when my BFF Jodi and the Butterfly Fund came in to rescue us. You see.. my biggest fear, once the wish was granted, was that we could not actually afford to go. An extra ticket was over $1,000, plane tickets to Seattle (which was the closest cruising to Alaska point to us) were about $1,500, then there were hotel costs in Seattle along with spending cash for souvenirs and excursions. I started saving money like crazy, but it was clear there was no way I was going to make it. I panicked.

I posted something on FB about it and The Butterfly Fund did a little fundraiser for us and they were able to raise enough money to pay for the extra ticket and the hotel costs. Jodi did a fundraiser of her own and got our airplane tickets plus extra spending cash. I figured that, with my savings, it would be enough. And it was. All in all, this is a trip we could have never afforded to go on our own, never.

So, a BIG Thank you to the Scott Ward-Schofield Memorial Fund, the Butterfly Fund and to my amazing friend Jodi Champagne who also took the time to give us rides to and from the airport and for the amazing book about Nicky she is working on to raise EB awareness. I will be forever grateful to you and I don’t know how I deserve to have such a wonderful friend. I love you!