Showing posts from October, 2017

"Mom, why do you scrapbook?"

One night I was working in my new craft room, stamping and scrapping away the stress of a busy weekend when I heard grunting and groaning behind me. Zach was pulling a kitchen chair, a stack of notebook paper, and his box of crayons into my room and proceeded to set up on the other side of my already crowded scrap table. He didn't ask if he could join me, and I hadn't invited him. His thought process was he had a project and I would help him.
He got right down to business, creating a comic book very similar to the Captain Underpants book he had recently been reading. He was proud of his creation and was focused and working hard. He worked in silence, despite my attempts at conversation, so I turned Project Runway back on and got back to my work.
A couple minutes later when he was done with the outline of his Captain Diaper character and had started to color it in he asked me, in a very serious voice, "Mom, why do you scrapbook?"
I had one of those moments. You know …

Brotherly Love

Ah, brotherly love . . . who can't relate to the bottom photo on this layout? There's nothing quite like the relationship between siblings. One minute you're best friends, and the next you want to strangle your brother or sister!
Caleb and Zach have an extremely close relationship. They are best friends! When Caleb was first diagnosed, and we realized how much help he would need with everything, we worried about the dynamic between brothers. We were concerned that Zach might resent all the attention Caleb would get just simply on the basis he needed it. To add insult to injury, Dave and I were encouraged not to have any more children because SMA is a genetic disorder. 
While we know many families that have gone on to have additional children - some completely healthy, other affected with SMA - we made the decision not to have any more kids. I was heart broken at first, but when we realized that Zachary had some special needs of his own that completely differed from Caleb&…

Grief Comes in All Shapes & Sizes

I posted this picture on Facebook back in May of 2014. We were in Washington DC for Police Week and this was Zachary minutes before leaving the hotel for the Police Memorial Ceremony at the Capitol. I was waiting for the elevator with both boys, and then I panicked because I couldn't find Zach - I turned around and he was back by our hotel room door. It was early in the morning, too early, and it was a hot and humid and we had to dress up. Zach was acting how we all were feeling, and let's face it, this picture is adorable!
Police Week was a pretty intense experience for all of us. The NY State Police made it possible for Dave's family, my parents and the boys and I to go to Washington D.C. to attend the annual C.O.P.S. (Concerns of Police Survivors) Conference. There was something comforting about being around other families that experienced the same type of loss we had, but at the same time, it ripped open scabs that had barely begun to heal. 
As hard as it was to lose …

Gangnam Style

Dave loved music and could rock a dance floor. He had rhythm flowing through his veins and it seems that Zach has inherited some of his daddy’s musical talent! While Zach struggles academically, his music teacher always gives him “exceeds expectations”. Zach also has Dave’s love of dancing!
One night I had taken Caleb out for an appointment, and when I came home Zach ran up to me, “Mommy, Yook! Yook!” Dave hit play on his iPod, and "Gangnam Style" started blaring and they both broke into dance. Not the choreographed dance most people associate with song, but their own version! It consisted mainly of Dave and Zach starting from opposite sides of the room and hopping/galloping past each other to the opposite side of the room. Dave looked a little winded, and when I asked Dave how long they had been dancing like this he said, “Oh, about an hour. Zach hasn’t gotten tired yet!”
On Caleb’s 5th birthday, Zach and Daddy demonstrated their dance for all the extended family. I so wis…