Sunday, May 29, 2011

Dyl's Communion

May has been a long and busy month. At the beginning of the month, Dylan received his First Holy Communion, a day I really never thought could be possible. The reason I didn't think it could be possible was because since Dylan was 18 months old he completely lost his swallow. I started to notice Dylan having a problem swallowing around his 1 year birthday. He was starting to choke on bottles a bit and then in the January after his first birthday he came down with the Flu and his swallow was greatly compromised. I remember taking him home from the hospital with a GJ Feeding Tube and still trying to give him things by mouth. How stupid of me because due to that he choked a few times and had some major desats. Finally when he was about 18 months old I said no more food by mouth. Period.

Faith is something that is really important to me. I grew up Catholic and I wanted the same for Dylan and Heather. A few years ago I approached Arthur (Dylan's nurse) and asked him if he would become Dylan's religious mentor. Arthur was definitely up to the task. He worked with Dylan a lot and Dylan had to understand Arthur's new role as spiritual advisor in addition to being one of his best friends. We started to bring Dylan to church. This has always been difficult for me because I always feel Church can tend to be one of those super germy places I usually like to avoid with Dylan like the supermarket or the mall. Our parish, St Agnes Cathedral in Rockville Centre, is fabulous. The priests are very accommodating to our situation and there is a large handicapped section which is away from the germ fest. I also try to avoid going to the family mass because again there are always a lot of sneezing and coughing children. Arthur helped us to realize we could bring Dylan to church and to not be nervous in doing so. Arthur also made Ron and I realize certain things about our faith and I think we in turn explained to Arthur how we felt about certain things.

At a certain point, Arthur told me he felt that Dylan was ready to receive First Holy Communion and his First Confession. We contacted St Agnes and Fr John McCarthy assisted us in all of the details. Arthur suggested that his parish priest and friend, Fr. Robert assist us in Dylan's final preparation. Fr. Robert is a wonderful man. Dylan and Heather both truly enjoyed his visits and I enjoyed his guidance. Arthur and I explained to Fr. Robert how Dylan did not swallow. Fr. Robert said that he would use a very small piece of host and that his should melt on Dylan's tongue. Arthur took a few pieces that were not blessed and we practiced at home with Dylan. In preparation we also did a lot of extra oral motor exercises with Dylan. Poor Dyl, I was like a drill sgt...OPEN, CLOSE, RIGHT, LEFT, TONGUE OUT, TONGUE IN.

The big day arrived and Dylan was in good form that day. He wasn't junky and he didn't need a lot of suctioning. He knew this was an important day. My friend, Erin, from Lilly-Pop Photography took some beautiful pictures of us that morning. We arrived at the Cathedral and saw Fr. John and Fr. Robert. We hung Dylan's name banner on our pew and took a few pictures of him. Dylan was so excited to see so many of our family and friends at the church. He told Ron and I that he wanted Arthur to sit up front with us. When it was time, Fr. Robert came up to us and Arthur advised him on how big (or small) the piece of host should be. I then helped Dylan to open his mouth really wide and Fr. Robert placed a small piece of host on Dylan's tongue. I closed his mouth and after a minute we asked him to open it and there was nothing there. Fr. Robert put his hands on Dylan's head and said, Dylan now Jesus lives inside of you and Dylan yelled out a big YEAHHHH. It was a great moment for our family and I was very proud of him. It was so great that Dylan had a moment where he was just like the other 7 year olds in our neighborhood, receiving his First Holy Communion just like everyone else. I don't really know why I was so stressed considering how I saw one little girl spit her Communion out leaving her mother to pick it up from the floor and eat it and another little boy put it in his pocket.

Dylan & Arthur

Dylan & Fr. John

Dylan & Fr. Robert

A few days after Dylan's Communion I received a telephone call from the office of Senator Dean Skelos telling me that I had been selected as his 2011 New York State Woman of Distinction. I literally almost fell over. I felt so honored to have been considered and chosen for this award. It felt great to help raise more SMA Awareness in the great state of New York. I can never thank Senator Skelos enough for giving me this great honor. Here is the link to the press release on Senator Skelos' website:

Of course upon our return from Albany, Dylan had a fever, Heather has a double ear infection with swollen glands and I have strep throat. Poor Ron had been playing nurse to all of us. At least we have been getting some much needed spring cleaning done.

All of us with Senator Dean Skelos

Happy Memorial Day weekend to everyone. Remember those men and women who have fallen to keep our country safe and free.