Margaret's Tribute
There are so many people who are mourning the loss of our son Max. And yet, there are not many people who really knew him. His prematurity and susceptibility to illness kept him inside and away from crowds, and his treatment over the past four months kept him from home. Max has never been in a grocery store, he never attended a mommy-baby class, and in fact, the last time he was in this church was less than a year ago at his baptism. So when Mike and I were trying to decide whom to ask to speak here today, we had a hard time coming up with names. But then we realized the answer was simple, who knows him better than his mother and father? There was the Mighty Max that people came to know and love from his web site - strong, courageous, and determined. But he was so much more than that to us. He was real. I must admit that at times even I have a hard time believing that statement. Sometimes I am amazed that we were so blessed to have such a beautiful child. Let me tell you about him…
Max started dying from Hurler Syndrome the minute he was born. He was premature, he was developmentally delayed, he had asthma. From the time he was 3 months old he had to be held down and given breathing treatments three or more times a day. He took medicine for his acid reflux, and he had therapy to strengthen the muscles weakened from the brain hemorrhage he had at birth. To someone who never knew Max, these facts make it sound like Max had a horrible life. But he didn’t. He was happy, he was unaware of his illness, and he was capable. He found ways around obstacles placed in his path. For instance, because of the deformity in his spine, Max had a hard time pushing up to sit from a lying down position. So what did Max do? He would crawl over to something, pull himself to stand, and then plop down on his bottom. With all that Max was able to accomplish, how can one ever say a challenge is too hard?
Max had a killer smile and a dimple that could knock your socks off. He loved his bottles and his pa-gos, he loved his electric piano, he loved his Baby Einstein movies, and like most kids, he loved things he wasn’t supposed to have. Many times we used the remote control or cordless phone as motivation to get him to do his exercises. Max’s schedule of doctor’s appointments and therapies challenged even my organizational abilities, and without a doubt, his knack for catching every germ that came his way boosted regional sales of hand sanitizer. But if you really want to get to know Max, just look at his sister Grace.
Though Max had an uncanny resemblance to all other babies born with Hurler Syndrome, he still looked like his sister. Their beautiful big brown eyes, tiny noses and down-turned mouths let the world know that they were siblings. The smiles and laughter they shared told the world they were friends. Max loved no one more than Grace, and she was proud of everything he did. Grace was always determined to get Max to laugh, and she was always successful. Their favorite thing was to take a bath together – Grace in the big tub and Max in his little tub on the floor next to her. Bathtub peek-a-boo and splash mommy were the games to play. Neither one was aware of how sick he was. Grace hugged and kissed him, no matter how bad he looked. After his death, she crawled right into bed with him and got under the covers. Some may chalk it up to the innocence of childhood; I attribute it to the bond they shared. Grace loved him so that she offered Max her spirit so that he could live. I believe that thoughts of Grace kept Max alive for so long.
The thing that we will remember most fondly about Max was that he was a good boy. He never held a grudge against us for all of the medication we had to give him, the doctors’ appointments we made him attend, or the therapies we made him do. He fought to the very end, and tried harder than we could have ever asked of him.
To say that Max suffered greatly over the past four months is an understatement. To say that he is in a better place now than he was before he died is a fact. He was so sick, and death is so ugly. But Max was beautiful and we are so proud of him. We are proud of his will, his determination, his inventiveness. We are proud that he brought out the good in so many people. His life was painfully brief, but his influence was great.
Max started dying from Hurler Syndrome the minute he was born. He was premature, he was developmentally delayed, he had asthma. From the time he was 3 months old he had to be held down and given breathing treatments three or more times a day. He took medicine for his acid reflux, and he had therapy to strengthen the muscles weakened from the brain hemorrhage he had at birth. To someone who never knew Max, these facts make it sound like Max had a horrible life. But he didn’t. He was happy, he was unaware of his illness, and he was capable. He found ways around obstacles placed in his path. For instance, because of the deformity in his spine, Max had a hard time pushing up to sit from a lying down position. So what did Max do? He would crawl over to something, pull himself to stand, and then plop down on his bottom. With all that Max was able to accomplish, how can one ever say a challenge is too hard?
Max had a killer smile and a dimple that could knock your socks off. He loved his bottles and his pa-gos, he loved his electric piano, he loved his Baby Einstein movies, and like most kids, he loved things he wasn’t supposed to have. Many times we used the remote control or cordless phone as motivation to get him to do his exercises. Max’s schedule of doctor’s appointments and therapies challenged even my organizational abilities, and without a doubt, his knack for catching every germ that came his way boosted regional sales of hand sanitizer. But if you really want to get to know Max, just look at his sister Grace.
Though Max had an uncanny resemblance to all other babies born with Hurler Syndrome, he still looked like his sister. Their beautiful big brown eyes, tiny noses and down-turned mouths let the world know that they were siblings. The smiles and laughter they shared told the world they were friends. Max loved no one more than Grace, and she was proud of everything he did. Grace was always determined to get Max to laugh, and she was always successful. Their favorite thing was to take a bath together – Grace in the big tub and Max in his little tub on the floor next to her. Bathtub peek-a-boo and splash mommy were the games to play. Neither one was aware of how sick he was. Grace hugged and kissed him, no matter how bad he looked. After his death, she crawled right into bed with him and got under the covers. Some may chalk it up to the innocence of childhood; I attribute it to the bond they shared. Grace loved him so that she offered Max her spirit so that he could live. I believe that thoughts of Grace kept Max alive for so long.
The thing that we will remember most fondly about Max was that he was a good boy. He never held a grudge against us for all of the medication we had to give him, the doctors’ appointments we made him attend, or the therapies we made him do. He fought to the very end, and tried harder than we could have ever asked of him.
To say that Max suffered greatly over the past four months is an understatement. To say that he is in a better place now than he was before he died is a fact. He was so sick, and death is so ugly. But Max was beautiful and we are so proud of him. We are proud of his will, his determination, his inventiveness. We are proud that he brought out the good in so many people. His life was painfully brief, but his influence was great.
posted by Mike Ciacciarelli
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