Wishing for Elephants..Dylan's Life with SMA: January 2012

We have had a very busy holiday season as usual here at the Cuevas House. It was the usual house parties, dinners, visits to see Santa, holiday shopping, cookie baking, school concerts and other holiday madness that usually goes on here in December. We were even able to make it into the city to see the Tree (and freeze our butts off). I really enjoyed participating in some of Heather's school's Holiday Celebrations. She happily sang Rudolph the Red Nosed Reindeer on stage with her classmates and enjoyed holiday celebrations at school and dance class. Dylan's holiday celebrations were great as well with him having a Holiday Tea Party where he wore Pajamas with a Top Hat and Arthur wore a suit. Dylan also played in his second HVS Basketball Tournament and did a fantastic job. Team Dylan was out in full force that day.

When Ron and I were first married we would celebrate New Year's in Florida with his family. After Dylan started having complications with SMA and traveling without a nurse became more difficult this became virtually impossible because we didn't want to have a nurse be away from their family during the holidays. This year I asked Arthur if he would come to Florida with us for New Years and he agreed. The kids were bursting with excitement to see their "Florida Cousins" and we couldn't wait either. We had a wonderful week celebrating Christmas with everyone. Heather had her first official sleepover at her cousin Alyssa's house where she got to do all sorts of cool things like bake cookies, get a mani/pedi, and get tons of attention. Dylan got to sleep that day until 10:30 since Heather wasn't there waking everyone up. I did think it was sweet that Dylan and Heather both bought each other little gifts during their respective outings of the day and surprised each other when they were reunited that evening. We also had the opportunity to visit with Jennifer and Madison who are part of our SMA family. Madison and Heather had a great afternoon painting and playing dress up and I got to catch up with Jennifer who is one amazing mama. On that same day Dylan, Ron, Arthur and my nephews, Mike and Phil, visited my brother in law in Miami and Dylan soon learned how to chase pretty girls in Miami. What can I say he is charming just like his dad. We then rang in the New Year with Ron's family for the first time in a long time and I have to say I felt so accomplished that we were finally able to make it to Florida for New Years again. I thanked Arthur a lot because I know it wasn't easy for him to be away from his family, but he knew how much it meant for us to take this trip. We really had a wonderful time celebrating the holidays, Florida style. Many thanks to my inlaws and sister-in-law, Lisa for all they did to make our trip a special one.

Before we left to go to Florida, Dylan asked me if we were going to Disney. I had planned to stop at Disney to break up the drive but didn't tell anyone, not even Ron (well, I did tell him once we got to Florida that our stopover night was in Disney, not North Carolina and Maryland like I had originally told him). I told Dylan we were not stopping at Disney (with fingers crossed behind my back). Dylan replied...Mom, how can you drive me all the way to Florida and not stop at Disney? Anyway, we left South Florida and started heading up to what was supposed to be North Carolina. The kids were depressed to leave but my all too smart son suspected something was up. That along with the fact that he can now read the signs gave our little secret away. Anyhow, the kids & Arthur were very surprised and excited to spend the day at one of their favorite places but we had a lot to do with little time. We were crazy Disney Park Hoppers that day. We have never been to Disney during the Christmas Holiday week. It is absolutely insane there. It is super crowded and people are super rude. As Heather gets older she is becoming more aware that not everyone has a sibling who is in a wheelchair and on a ventilator. When we were walking around I noticed she was becoming a little upset.
What is wrong, Heather?
Why are people staring at Dylan?
(Crap) Well, sometimes people have never seen a little boy in a wheelchair.
Do they think he is weird?
Maybe.
He's not.
I know.
I don't want people to stare at him.
Then when you see someone staring at him tell them that it's not polite to stare.

I sometimes forget how the staring first used to enrage me. It would sometimes drive me crazy and send me into a complete tailspin and fury of feelings. I am over that now and I almost chuckle when people stare at us. SMA will not hold me back, I am not going to feel self conscious of that and deprive Dylan of something I want to do or I think he will enjoy. I once had a woman say to me, I can't BELIEVE you take a child like THAT out of the house. After much self control I responded, Really? Well I am glad I am his mother and that you are not.

As we were on line for one of the rides there was a little boy staring at Dylan. Heather went over and said to him....It's not polite to stare. This is my brother Dylan and if you want to meet him I will introduce you to him. The little boy jumped into his mother's arms and she apologized to me. I told her there was no apology needed. Later on Heather and I had another conversation.
Mom, I told that boy that it wasn't polite to stare and he still was scared of Dylan.
That's true, but it was brave of you to stand up for your brother.
Mom, someday someone will say yes.
To what., I said.
To me introducing them to Dylan.
I am sure they will, I said.
Dylan smiled and told Heather he loved her. Very proud of my kids.