Blog · August 10, 2014

Legoland Love & Sad Reflections…

IMG_3897_skThis past week we were fortunate enough to visit Legoland-a friend who did a fundraiser for us bought us the tickets, of which I will forever be grateful. I wish I could convey in words how much fun Nicky had in this trip and how nice everyone was to us everywhere we went.

For starters, I must say that Nicky has gotten quite hurt in the past when doing rides so he always refused to do the ‘crazy’ ones (as he called them) at Disneyland & Universal Studios. By crazy ones I must specifically mention ‘Space Mountain’ & ‘Matterhorn’ at Disneyland and the ‘Mummy’ ride at Universal Studios. He wants and tries all he can, but sometimes the hardest part is not the ride itself but getting INTO the car/boat or whatever that may be. This time, however, I saw a different Nicky. The rides at Legoland are milder since the park itself is more geared toward young children and not adults (as, say, Magic Mountain is) so he flat out told me he didn’t care if he was going to get hurt, he was going to have FUN!

So… I brought a soft blanket for him to sit on and told him I would hold him ‘good’ so he would not bump too much here and there. A couple of rides were pretty crazy, the ‘Dragon’ and the ‘Project X’, but all the attendants let us through without waiting and held up the ride for us so Nicky could get in. It takes a little while for Nicky to get in and out and I was thankful the attendants did not rush Nicky and told us to take our time. They let Nicky take the power chair up to the ride itself and then had the chair ready for us when we got out.

We also had quite a few people approach us saying nice things to us, such as ‘I’ll be praying for you’ or hold the door open and such. One kid, about 12 or 13, walked up to Nicky with his little sister and asked him how he got his injuries. He and Nicky had a nice conversation, Nicky told him about EB and the kid told him he felt bad. Greg and I were impressed at this young man. Most people just stared, he had the courage of coming up to him and ask. Mind blown.

My husband walks slow with his brace on his leg, so I am sure we looked pretty noticeable out there. Many times he would put his hand over Nicky’s chair to get some help. It was hard for my husband to get in many of the rides as well but he was a trooper and never complained once. He told me many times that if Nicky does not complain, he has no reason to. My husband is a man of few words anyway, I normally have to ask him how his foot is feeling, or if he’s any pain, as he’s not one to volunteer information. After the first day he showed me his foot and when I asked him if he was in any pain he said ‘atrocious’. I would have never known. I hugged and kissed him. After one slow ride Nicky got a nasty blister on one of his feet (which we later looked at the hotel and it was a nasty blood blister which covered a third of the bottom of his foot) and told me he just needed his morphine and wanted to keep having FUN. So, later when we did the water splash ride and was laughing of how much he loved it I just couldn’t help but kissing him all over. I mean, this kid is an angel. All of that he endures on a daily basis and he’s the sweetest, gentlest, kindest guy everyone hopes to meet. Later in the Gift Shop he followed me around everywhere I went. It’s like I have a little buddy I can talk to at anytime because he’s always ‘there’. He’s my angel, plain and simple.

I try to plan something ‘fun’ every year, and it’s true I’ve had help financially from my ex-husband (Nicky’s dad) and various charities and organizations, but to be honest, I don’t know what else to do. His life is so limited. He can’t do anything. I have to help him with the most basic things that Connor has been able to do himself since he was 3 or younger. There are days that I honestly feel I can’t see him suffer as he does one more day. But what is the alternative? Nicky, despite it all, loves living. As long as he wants to hang in there, so will I. The form of EB he has is progressive and degenerative. That means he gets weaker, day by day. Each day, he needs more and more help, more support. So many children with the same form of EB like Nicky have already passed away. Soooo many! I don’t know how much longer we’ll have him for. He could die tomorrow, or, if a cure/treatment is found he could hang on for decades. The future is a scary, unknown place, so I try to plan ‘fun’ for the future so I don’t dread time clicking away but instead I can look forward to something.

Daily life for Nicky is daunting. It’s hard for me to put it into words. Not many people understands how serious it will be if he falls and breaks a bone, or that a simple infection could result in death for him. Thank goodness for Connor and a couple of online friends, because he has no friends that come over and play, he never had them. Have you ever thought about what it would feel like to see your child losing all abilities, and start relying on you for everything? Does your teenager need you to wipe his bum or put a diaper on him at night? Probably not.   Imagine hearing your child talking about what sort of car they will buy when they grow up, knowing they will most likely never get their drivers license. While we were waiting at the restaurant for our table Nicky was curious about how to drive, so I taught him and told him everything he needed to know. And it killed me inside. I wish and hope he can someday, but reality is staring at me smack in the face. Without a cure, he will die, sooner rather than later, but first I have to watch his body completely waste away. It makes my heart hurt just thinking about it. This is why I try as hard as I can to pack an entire lifetime into the time he has left. I can’t just let him sit around while I go to work to ensure financial security in the future. Not when there is possibly no future. I have to do it now. I ask Nicky where he wants to go next year so I can try to start saving money for it, so that he will have lived an entire lifetime by the time he dies. Everyone should be able to die with more memories than dreams. That’s what I am trying to do.

Here’s the crazy thing – some people, even family, have actually been jealous of those few things we have experienced. I’ll be the first to tell you I would give it all up, every single thing, for a cure. Most people don’t realize how blessed they are. They look to their problems instead of their luck. In our life, everything is a challenge to overcome, everything has to have a silver lining. I am lucky Nicky was not born with an even more severe form of EB, or other conditions that kill babies. I have to be thankful and hopeful and steer away from drama while tackling life’s challenges. Everywhere we go has to be wheelchair friendly or we can’t do it. I opted to get a power-chair that breaks down in pieces and fits in the trunk of my Prius because a wheelchair-accessible vehicle is prohibitively expensive. And I drive a Prius because I use a lot of gasoline taking Nicky around to various Doctors and Hospitals. Visiting friends and family or going to parties and other outings is extremely hard. Nicky can’t climb stairs and places need to be wheelchair friendly. Unless family come to us, we won’t see much of them, and we haven’t. We have to fight with ignorant people who think disabled parking is for anyone. Toileting in public is also an issue. Usually there is only one disabled toilet, and it’s often taken, so we have to get Nicky to squeeze in those normal size ones, a challenge in itself since then the door does not close. I would happily give up all the conveniences if it meant my son no longer had EB. But he does. And that isn’t going to change.

We do have another outing planned for next month-since Connor is such a universe fan, we plan to go to the Griffith Observatory and the California Science Center to see the Space Shuttle, both are local so it won’t be too much trouble, hopefully. I finally heard there ‘may’ be a class reunion happening in October and, well, we’ll see. It’s in New Mexico, two states away and a two day drive. When the dates are set in stone I will check and see if I can manage it. Not sure if I can.

So, at the moment my plan for next year is a 3-4 day cruise to Vancouver from San Francisco. Nicky wants to do another Alaska cruise, but since that’s just out of my price range, I told him Vancouver is as north as I can afford, 3-4 days is the most I can also afford and departing from SF means we can drive there and don’t need to fly nor need a hotel. It’s the cheapest way for me to make sure he gets his wish. Connor loved the cruise, so he’s all for it. If anyone has any ‘insights’ on deals for the Princess Cruise line that does this sort of trip, please let me know!! I know I need to book ASAP, I will have the money for it in a few months (by Xmas at the latest).

Then for 2016 I promised him Italy for graduation. I promised him a trip to see his grandparents for graduation a LONG time ago, so I must deliver. I mean, both Nicky and Connor want to go to Italy now, but I just cannot afford it. I need these 2 years to save enough, and hopefully I can save enough because that ain’t cheap, ha ha. I am always looking for ways to skimp here and there so I will keep clipping my coupons and shop at thrift stores in the meantime!

I want to thank everyone for the kind words-they mean a lot to me. And also a BIG thanks to Juan Lewis for the tickets to Legoland!

Love and Light