Day By Day
The days following Max’s death were a scramble. Maybe it’s best to go day-by-day:
Wednesday, November 26
Following Max’s death, we were able to get him dressed and have some time with him. Margaret and Anmarie bathed him and it was amazing to watch the love and care from both his loving mother and the nurse who spent the most time with him. The entire experience at the hospital was always so respectful and to the end the care shown by Anmarie and all those who were needed to help with all the equipment and machines showed tremendous respect. Thank you. After a couple hours, Grace, Grannie, Auntie Bethie, Auntie Katie and Grandpa J. came over and sat with Max for the last time at the hospital. Grace came in first and climbed right in bed with him. She asked “Where’s Kendall?” because she thought that if Max was in the room and he was dead, then the other angel that she knew should be there too. She gave him kisses and was very loving. As time passed, more nurses came in and were so nice to us and told us how much they would miss Max. A few of his doctors came in and told us we had done all we could. They have to say that, but it was nice to hear at that moment. At around 3:30 in the afternoon, we slipped out, carrying the last of his stuff from the room, and entrusted Anmarie to follow Max’s body to the morgue. Max’s autopsy was scheduled as well. We hope with all our hearts that something can be learned from Max that will help other children suffering from Hurler Syndrome and all other children undergoing.
Thursday, November 27 (Thanksgiving)
We began to make the funeral/visitation arrangements over the phone, and we are thankful to both Grannie and Pat Micucci for making most of the phone calls for us. We decided to drive back on Thanksgiving because spending the holiday with all the other families at RMH would have been difficult emotionally. Aunt Eileen and cousin Jenny jumped in their car with no notice on a holiday and drove their van up to get the rest of our stuff. We left at around 4 and got back in great time because there wasn’t really anywhere to stop on a holiday. Grannie, Katie, Aunt Eileen and Jenny all drove back the same night and got to our house at around 5am.
Friday, November 28
Most of this day was spent trying to recover our house. We found the emotion of the homecoming to not be as overwhelming as we feared. There were some signs of our little guy throughout the house, but these conjured up all good memories. Max’s life in Illinois was pretty good; it was in transplant in Minnesota that he suffered. We found a house that still had stuffed closets even though we had been wearing clothes and playing with toys the whole time in Minnesota. It was clear that we needed to do some house cleaning. Margaret and I started to bag and box up lots of old stuff for donation, and we cleared out a lot of Grace’s toys when she wasn’t looking. Our neighbor Jodi was nice to take Grace for most of the day so we could get so much cleaning done. Grace was happy to see her old neighbor girlfriends, Lindsey and Megan. Max’s body meanwhile was being autopsied.
Saturday & Sunday, November 29 & 30
This weekend we got a lot of errands done related to the funeral with a lot of help from Grandma and Grampa Chick. Grace spent some time with her cousins and we were able to meet with the funeral parlor and church. The funeral parlor was very helpful in quickly setting up a lot of the arrangements. They did not have a lot of suggestions for readings in regard to the death of a child so we were eager to speak to the priest. When we met with Father Kilbridge on Sunday, he remembered baptizing Max and that was a comfort. He also listened to all of our stories about him and said he would read the big printout of Max’s story that we wrote. As he said, “This is a lot of information for someone only 16 months old.” That night we finished making the poster boards with Max’s pictures.
Monday, December 1 – VISITATION 5-8pm
In the morning we drove to the cemetery again. We had driven out on Saturday and seen the “Guardian Angel” section and we were a little concerned that it might not be right for Max because some of it was a little unkempt. But we were shown other sections and they just didn’t seem right. Max was a baby, and the Guardian Angel section is just for babies. It seemed right that he should be buried alongside other babies and we found a spot next to a nice tree that was open. The guy who we met with told us most people don’t even bother coming to the cemetery when babies die, they are just too overwhelmed or they want it over quickly. How sad. Later a good friend told us that when he saw all the colors on all the tchotchkes left all over the graves it was a beautiful, vibrant sight on an otherwise dreary day.
When we got to the funeral parlor we had only one concern: Was Max presentable? Because of his condition at death (scabbed over eyelids, broken down skin, etc) and the autopsy, we weren’t sure we would be able to have the casket open. But the funeral parlor did a great job of dressing Max and covering his wounds with make-up. He was wearing a red hat and they told us not to touch it so we obeyed. In the casket we put a picture of Max and his sister and a little stuffed stegosaurus that she gave him. The only other thing was a pair of min-boxing gloves because he had been such a fighter. He looked like our Max when you stepped back a bit. But up close, we could still see the suffering and we did our best to put on a brave face. As people arrived, we realized that it was as close to a homecoming party for us that we were ever going to get. We had both thought many times of the day we could show Max off after transplant and to say thank you for all the help. The outcome was as far from anything we could have ever hoped for, but we still wanted to show our son off. He had fought for so long and had been so brave, we thought we should match his effort and not break down if that was at all possible. But the truth is, it was so great to see so many people. People who had meant so much to Max and to us and to our ability to take care of him. Many of his pediatricians and therapists came and even nurses from his time in the NICU. There were flowers from all over the country, even from other Hurler families and from the MPS Society. There was a huge group of people from Mike’s job and we were able to say thank you for being so generous with his time. We saw so many comforting faces and it really helped for us to be able to have so much love in one room. We know Max felt so much love in his time here and we hope he knows it continued on after he passed.
Tuesday, December 2 – FUNERAL (10:30am)
This day was much harder. All of the positive energy from the night before seemed to lose steam as we saw Max’s body again. We both felt more overwhelmed by the reality of things and it really hit home when the casket was closed and put into the hearse. It was so small. We had four pallbearers (all of Max’s uncles) and they were nearly on top of each other. We went as procession to St. Vincent Ferrer and the pallbearers brought Max into the church. We saw the faces of people who weren’t able to attend the visitation and there was so much sadness. We could hear the voice of the soloist and it was beautiful. We would not have known anyone to sing at the funeral but the soloist was wonderful. She began with “I Am Not Afraid” which was strong and clear. At this time it bears mentioning Auntie Dana did a tremendous job with the program for the day, it looked great. Thank you. Father Kilbridge did a great job talking about Max and trying to find answers for his loss. The gifts were brought up by Jenny Birmingham and Amy White (two moms of transplant survivors for Hurler). What a wonderful gift to us it was to have such amazing moms at our son’s funeral. Thank you so much. After “Amazing Grace” (the perfect song for so many reasons), the emotion was very powerful. Soon it was our turn to talk, and Margaret gave the eulogy and Mike talked about what came next. You can read our words here:
Margaret’s Tribute
Mike’s Tribute
Then we hugged some more outside the church and went to the burial. Father Kilbridge was short and sweet under the tree and everyone put a flower (Thank you Chris for gathering them!) onto the casket. Then most of us went to a lunch set up by Auntie Dana and Uncle Geoff and it was our last chance to be with everyone in one room. Of course as always there wasn’t enough time to spend with everyone and say proper thanks.
We were so touched by the amount of support our son received. The amount of flowers (each one outstanding in its beauty), the amount of travelers, the amount of cards and notes was astonishing. Our son was a gift. So too has been the love he created. Thank you all so much.
That’s about all we think our audience can stand to read at one time and it’s about all we have strength to write. That said, we heard again and again about how people were inspired or encouraged by our writings so for all of you we hope this update will suffice for a time. PLEASE NOTE: We have also updated the “Max’s Story” Section of the web site found on the bottom of the home page. This summarizes Max’s journey for those new to the site, or those who want to review his short life.
Love to all,
Mike & Margaret
Wednesday, November 26
Following Max’s death, we were able to get him dressed and have some time with him. Margaret and Anmarie bathed him and it was amazing to watch the love and care from both his loving mother and the nurse who spent the most time with him. The entire experience at the hospital was always so respectful and to the end the care shown by Anmarie and all those who were needed to help with all the equipment and machines showed tremendous respect. Thank you. After a couple hours, Grace, Grannie, Auntie Bethie, Auntie Katie and Grandpa J. came over and sat with Max for the last time at the hospital. Grace came in first and climbed right in bed with him. She asked “Where’s Kendall?” because she thought that if Max was in the room and he was dead, then the other angel that she knew should be there too. She gave him kisses and was very loving. As time passed, more nurses came in and were so nice to us and told us how much they would miss Max. A few of his doctors came in and told us we had done all we could. They have to say that, but it was nice to hear at that moment. At around 3:30 in the afternoon, we slipped out, carrying the last of his stuff from the room, and entrusted Anmarie to follow Max’s body to the morgue. Max’s autopsy was scheduled as well. We hope with all our hearts that something can be learned from Max that will help other children suffering from Hurler Syndrome and all other children undergoing.
Thursday, November 27 (Thanksgiving)
We began to make the funeral/visitation arrangements over the phone, and we are thankful to both Grannie and Pat Micucci for making most of the phone calls for us. We decided to drive back on Thanksgiving because spending the holiday with all the other families at RMH would have been difficult emotionally. Aunt Eileen and cousin Jenny jumped in their car with no notice on a holiday and drove their van up to get the rest of our stuff. We left at around 4 and got back in great time because there wasn’t really anywhere to stop on a holiday. Grannie, Katie, Aunt Eileen and Jenny all drove back the same night and got to our house at around 5am.
Friday, November 28
Most of this day was spent trying to recover our house. We found the emotion of the homecoming to not be as overwhelming as we feared. There were some signs of our little guy throughout the house, but these conjured up all good memories. Max’s life in Illinois was pretty good; it was in transplant in Minnesota that he suffered. We found a house that still had stuffed closets even though we had been wearing clothes and playing with toys the whole time in Minnesota. It was clear that we needed to do some house cleaning. Margaret and I started to bag and box up lots of old stuff for donation, and we cleared out a lot of Grace’s toys when she wasn’t looking. Our neighbor Jodi was nice to take Grace for most of the day so we could get so much cleaning done. Grace was happy to see her old neighbor girlfriends, Lindsey and Megan. Max’s body meanwhile was being autopsied.
Saturday & Sunday, November 29 & 30
This weekend we got a lot of errands done related to the funeral with a lot of help from Grandma and Grampa Chick. Grace spent some time with her cousins and we were able to meet with the funeral parlor and church. The funeral parlor was very helpful in quickly setting up a lot of the arrangements. They did not have a lot of suggestions for readings in regard to the death of a child so we were eager to speak to the priest. When we met with Father Kilbridge on Sunday, he remembered baptizing Max and that was a comfort. He also listened to all of our stories about him and said he would read the big printout of Max’s story that we wrote. As he said, “This is a lot of information for someone only 16 months old.” That night we finished making the poster boards with Max’s pictures.
Monday, December 1 – VISITATION 5-8pm
In the morning we drove to the cemetery again. We had driven out on Saturday and seen the “Guardian Angel” section and we were a little concerned that it might not be right for Max because some of it was a little unkempt. But we were shown other sections and they just didn’t seem right. Max was a baby, and the Guardian Angel section is just for babies. It seemed right that he should be buried alongside other babies and we found a spot next to a nice tree that was open. The guy who we met with told us most people don’t even bother coming to the cemetery when babies die, they are just too overwhelmed or they want it over quickly. How sad. Later a good friend told us that when he saw all the colors on all the tchotchkes left all over the graves it was a beautiful, vibrant sight on an otherwise dreary day.
When we got to the funeral parlor we had only one concern: Was Max presentable? Because of his condition at death (scabbed over eyelids, broken down skin, etc) and the autopsy, we weren’t sure we would be able to have the casket open. But the funeral parlor did a great job of dressing Max and covering his wounds with make-up. He was wearing a red hat and they told us not to touch it so we obeyed. In the casket we put a picture of Max and his sister and a little stuffed stegosaurus that she gave him. The only other thing was a pair of min-boxing gloves because he had been such a fighter. He looked like our Max when you stepped back a bit. But up close, we could still see the suffering and we did our best to put on a brave face. As people arrived, we realized that it was as close to a homecoming party for us that we were ever going to get. We had both thought many times of the day we could show Max off after transplant and to say thank you for all the help. The outcome was as far from anything we could have ever hoped for, but we still wanted to show our son off. He had fought for so long and had been so brave, we thought we should match his effort and not break down if that was at all possible. But the truth is, it was so great to see so many people. People who had meant so much to Max and to us and to our ability to take care of him. Many of his pediatricians and therapists came and even nurses from his time in the NICU. There were flowers from all over the country, even from other Hurler families and from the MPS Society. There was a huge group of people from Mike’s job and we were able to say thank you for being so generous with his time. We saw so many comforting faces and it really helped for us to be able to have so much love in one room. We know Max felt so much love in his time here and we hope he knows it continued on after he passed.
Tuesday, December 2 – FUNERAL (10:30am)
This day was much harder. All of the positive energy from the night before seemed to lose steam as we saw Max’s body again. We both felt more overwhelmed by the reality of things and it really hit home when the casket was closed and put into the hearse. It was so small. We had four pallbearers (all of Max’s uncles) and they were nearly on top of each other. We went as procession to St. Vincent Ferrer and the pallbearers brought Max into the church. We saw the faces of people who weren’t able to attend the visitation and there was so much sadness. We could hear the voice of the soloist and it was beautiful. We would not have known anyone to sing at the funeral but the soloist was wonderful. She began with “I Am Not Afraid” which was strong and clear. At this time it bears mentioning Auntie Dana did a tremendous job with the program for the day, it looked great. Thank you. Father Kilbridge did a great job talking about Max and trying to find answers for his loss. The gifts were brought up by Jenny Birmingham and Amy White (two moms of transplant survivors for Hurler). What a wonderful gift to us it was to have such amazing moms at our son’s funeral. Thank you so much. After “Amazing Grace” (the perfect song for so many reasons), the emotion was very powerful. Soon it was our turn to talk, and Margaret gave the eulogy and Mike talked about what came next. You can read our words here:
Margaret’s Tribute
Mike’s Tribute
Then we hugged some more outside the church and went to the burial. Father Kilbridge was short and sweet under the tree and everyone put a flower (Thank you Chris for gathering them!) onto the casket. Then most of us went to a lunch set up by Auntie Dana and Uncle Geoff and it was our last chance to be with everyone in one room. Of course as always there wasn’t enough time to spend with everyone and say proper thanks.
We were so touched by the amount of support our son received. The amount of flowers (each one outstanding in its beauty), the amount of travelers, the amount of cards and notes was astonishing. Our son was a gift. So too has been the love he created. Thank you all so much.
That’s about all we think our audience can stand to read at one time and it’s about all we have strength to write. That said, we heard again and again about how people were inspired or encouraged by our writings so for all of you we hope this update will suffice for a time. PLEASE NOTE: We have also updated the “Max’s Story” Section of the web site found on the bottom of the home page. This summarizes Max’s journey for those new to the site, or those who want to review his short life.
Love to all,
Mike & Margaret
posted by Mike Ciacciarelli
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