Monday, November 7, 2011

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.

Thursday, October 20, 2011

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.....

Thursday, August 4, 2011

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

Wednesday, July 20, 2011

Have a Magical Day

It has been a busy summer for us so far. We spent the end of June and beginning of July in Orlando, FL for the annual FSMA Conference. Anyone who has ever traveled to Walt Disney World knows what a magical (& expensive) place it can be. Our kids literally explode with excitement when they hear they are going there and the fact that they were going to be there with some of their friends and family made it even better. The Conference was great. I always enjoy seeing some of my old SMA friends and meeting up with some new ones. I have also always enjoyed getting to speak one on one with so many SMA Researchers and SMA Doctors. This truly is like going to a family reunion. Last year's conference was in California and I didn't take Dylan. Besides the fact that I missed him terribly, the conference just didn't have the same feel for me without him being there. Having him with me not only puts my mind at ease but it is also a blast to watch him interact with the other kids with SMA. Heather jumps right in there too. Both kids did a lot of fun things while we were there. Dylan built a remote control Mater (character from the movie Cars) at Downtown Disney. Heather and her BFF Emma went to the Bibbidi Bobbidi Boutique and were transformed into Rapunzel and Princess Tiana. There was "Pixie Dust" everywhere...I mean everywhere, but it was worth it to see how happy it made them. We became very familiar with what the kids called Poncho Time during the Thunderstorms or as I called them, Mini Hurricanes. Dyl actually used to sing It's Poncho Tiiiiimmmeee every time it rained and gave me a fist pump. I think I need to ease up on my Jersey Shore watching. I paid $60 in wands at Harry Potter World which did nothing to stop the torrential rain that occurred. My best spells didn't work. I guess I was having an off day or maybe I just drank too much butterbeer.  In addition to seeing our SMA family, Ron's parents and his brother, Andy came up to visit us. We also were able to spend some time with our friends, Jackie & Sal. Gen and I actually met up with them one night and we stayed at Magic Kingdom until 1:30am. I think we rode almost every ride in the place. I got to go to the Outlet stores with Gen. Ron got to golf (twice I might add). Ron and I went on a wonderful date night where someone (not me) had one too many Nutty Irishmen. We also celebrated my birthday at Bongos which was a great last night to our trip.
On this trip I learned:
1. The Disney buses are slower than the Pony Express.
2. I need to take a Valium or drink a full bottle of Wine before entering Harry Potter World.
3. Everything in Disney costs at least $10 and that a bottle of water is considered a "snack" (Heather didn't care too much for that!).
4. At the Grand Floridian they say "Have a GRAND day!" instead of "Have a MAGICAL" day!" Maybe that is because of the GRAND prices they have there.
5. Disney Ponchos cost $8.50 (I found something less than $10!!!!!).
6. Bon Jovi cover bands while good, are just not Bon Jovi.

Now it is back to reality and getting back to eating something other than Mickey Ice Cream Bars, Mickey Rice Krispie Treats, Mickey waffles, Mickey Popcorn, etc. I think if I would have eaten one more thing shaped like Mickey Mouse I would have sprouted a tail and some mouse ears. Back to yogurt and salads, although maybe I did sneak a couple of those rice krispie treats home.

Bibbidi Bobbidi Boutique!

MJ, Peg, & Dyl

Heather & Madison

Dyl & Kiley

Kevin & Ron thought highly of the Theme Parks

Meeting Rapunzel and Flynn

Arthur & Dyl at the Boma

More Butterbeer!!!!!!

Meeting Phineas & Ferb

Magic Kingdom at 1am!!!

Last Night Celebrating at Bongos

Best Buds at the TRex Restaurant

Some of the Greater NY Chapter Families

When we got home, Ron surprised me with tickets to the Yankees/Rays game on Saturday, July 9th. Just by luck of the draw this was the game when Derek Jeter hit his 3000th hit. I have been to many many many Yankee games but this one by far was one of the most special. The Stadium was just electric. Dylan kept saying how awesome it was. When the game was over a man came over to us and gave Dylan a limited edition pin to commemorate the day. It was nice to see someone do something nice for Dylan. Heather was just excited that she was able to have pink cotton candy. I was glad it wasn't shaped like Mickey Mouse. Truly a magical day.