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.