It's not polite to stare

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.

Team Dylan



Us with super SMA Mom, Brittany!



Ready for Santa

Christmas Morning

Celebrating Christmas in Florida

Heather and Madison

Heather being Heather

Heather and Alyssa

New Year's Eve at Lisa & Bob's

Lisa and Dylan

My father in law, Orestes

The party animals.

Wait, this doesn't look like North Carolina...

We are stopping WHERE??????

Fabulous 5 and Amazing 8

I love celebrating Heather and Dylan's birthdays. I feel it is one of my greatest privileges as their Mom to celebrate their birthdays in style. I always tell my family that I am going to just have a "small gathering" and then poof I somehow end up with 50 people in my house.

Heather turned 5 this year. I almost can't believe she is 5, in Kindergarten and on her way to ruling the world. Heather wanted to have a gymnastics party with some of her friends. This would also be the first time that many of Heather's friends would meet Dylan. I could tell that when Dylan entered the room that some of the kids were shocked and had questions so I tried to answer a lot of them. Some of them wanted to run right over and meet him and others were more reluctant. Heather was so great as she always is telling her friends not to be afraid of Dylan, that he is a kid just like they are. Later on that evening when I was putting Heather to bed she asked me if Dylan would ever walk. This is the first time in 5 years that she has ever asked me questions about Dylan's disability. I told her most likely no. She then had a ton of questions that followed and we spent close to a half hour talking about SMA and things Dylan could and could not do.
Will Dylan walk when he is 10? No.
Why? Because Dylan has SMA and it makes his muscles weak so he can't walk.
Did he get into an accident and that is why he can't walk? No.
Do I have SMA? No.
Do you and Daddy have SMA? No.
How did Dylan get SMA?
I don't know if it was a conversation I was prepared to have although I think I knew it would eventually happen. I am so proud of her for asking these questions and for listening to my answers. I don't think she really gave much thought about Dylan having SMA. Heather has always just thought of Dylan as her brother, her buddy. Now there was this whole concept for her to understand why he does things different than she does and why he goes to a different school than she does when her friends older brothers and sisters go to the same school. During the weeks that followed there were some more questions and more answers. All in all I have felt a lot of relief that maybe she understands some of the whys and the hows of SMA. Of course she has handled this with absolute grace as she always does. Here are some photos from her birthday celebrations!



Heather with her new Art Desk



Dylan celebrated his 8th birthday. I always feel a sense of victory on Dylan's birthday. As many of you know we were told that Dylan would not live to be 2 so to turn 8 is like...take that world, you are not God, you do not dictate time lines on things. Anyway...Dylan really wanted to go to one of the Yankee Playoff games but unfortunately he was really sick for the first round of the playoffs. Since the Yankees did not advance into the next round of the playoffs I agreed that we would take a day and spend it touring the Stadium. I was able to arrange this with our fine friends at the Yankees and they arranged the King's tour of Yankee Stadium for our family on Dylan's Birthday. This included visiting the Yankee Clubhouse, a special tour of the Yankee Museum, trying on a World Series Championship ring (Ok I got in on that action too), and of course a very special bag of Yankee goodies to go home with. It was a very special day with some very special people. Over the weekend we had a party for Dylan with some family and friends and had a visit from our friend Marc who brought along some friends of his own. Dylan and Heather both said that they can't wait for their birthdays next year....I need at least that time to recover.

Fundraising Season

June through September is our big fundraising season for the FSMA Greater NY Chapter. We held some amazing events this summer. Been behind in my blogging so here is a brief summary of what we accomplished.

We held our first ever Golf Outing at Hudson Hills Golf Course in Weschester County. It was an amazing day. My cousin, Rob, who is also the Westchester County Executive came to the event and declared the entire month SMA Awareness Month in Westchester and presented us with a proclamation. We were able to take in over $40,000 for this event. Many thanks to everyone who helped. Here are some pictures taken from our volunteer photographer, Jeff Rhode.

Next up was our Annual SMA Awareness Day at Citifield with the NY Mets in memory of baby Stephen Ruocco. The families who attended had a wonderful time. We received a donation from one of the family members so that the kids were able to attend the game for free. The kids were invited on the field for an Spirit Award Presentation which we received with NY Met's Star 3rd Baseman, David Wright. Later on in the game the Mets played a PSA which we made to help raise awareness. After the game all of the kids were invited to be VIPs during the Mr. Met's Dash and run around the bases. It was a fun day for the kids and families.

Just a few weeks later we had SMA Awareness Day at Yankee Stadium with the NY Yankees in memory of Ciara Van De Loo. The Yankees were very generous and donated some tickets to the kids in attendance. A few of the kids were invited to go on the field for a presentation on SMA where we were presented with a check for $10,000 from Quest Diagnostics and the kids were greeted by NY Yankees star centerfielder, Curtis Granderson. Dylan was held back in order to get a hello from his favorite pitcher, AJ Burnett. We then enjoyed watching the Yankees win the ball game.

The Grand Finale was our 7th Annual Walk N Roll in Long Beach, NY in memory of Keira Sweeney. It was a beautiful day and we had 20 SMA families from the Greater NY area participate. We were able to raise over $74,000!!! Completely amazing stuff. All but $5,000 was raised as a collective effort of SMA families. I was so proud of how hard the Greater NY Chapter Families worked this summer to raise funds and awareness to hopefully someday put an end to this disease. Now on to planning next year's events.....

Becoming Aware

August is SMA Awareness Month. This has always been significant to me since Dylan was formally diagnosed with SMA on August, 4, 2004. The reason I even remember this date is because Dylan had just turned 9 months old on that particular August 4th. It was an awful day when a doctor called me on the phone and told me that Dylan would likely die before he was two years old. I remember feeling completely empty and devastated. I remember looking at him the next morning laying in his pack and play realizing that he would never sit up, never walk, never run, never dance, never catch a football. My brain was on complete overload and somedays I still feel that way, like I am on total overload. I like to think that in the 7 years since Dylan's diagnosis which rocked my world as I knew it that I have turned devastation into hope. I believe in letting Dylan live his life to the fullest. Whatever he wants I try to make happen.  I no longer sit by and wait for tomorrow -- I do it now. I live for today because you just never know. Our time here on Earth is precious and I refuse to let SMA ruin my family's time.

SMA. Three letters that changed my life forever on August 4, 2004. I hope and pray that one day when these three letters are put together they mean nothing. Until that day we continue to pray for those who battle SMA every day and for those who are forever angels. Thank you SMA for making me aware so that I can be one of the people who brings you down.



Dylan one day after he was diagnosed with SMA



At Heather's Recital