Almost 1 year, RMH Gala
It has been such a long time since we have updated, and we apologize to our loyal readers. We are not sure just how many people still check up on us, and sometimes we wonder if we should be writing this journal any more. But then we remember that this diary will one day be read by Grace when she is older. Hopefully it will help her understand who her parents are and why they are the way they are.
The past few months have marked the anniversaries of so many important dates for Max. August 14th was the anniversary of Max's transplant. We were filled with such hope that day, and were so grateful for the second chance at life being given to our son. It was just 14 days after transplant that Max became very ill. We have been going back into our journal and reading our entries from last year. It is all so unbelievable to us, and sometimes feels like it was just yesterday we were in his hospital room with him. Our most difficult times are ahead of us, as we remember Max's sickest days. On November 26th it will be one year since he died. God we miss him so very much.
Since Max's death we have tried very hard to keep ourselves busy. Grace, of course, helps out with that. A very large part of us is proud that we have kept going, kept living life for each other and for Grace. We have never spent a day in bed crying, sent Grace to someone's house because we were too emotional, etc. Sometimes we wonder if this has been the smartest thing to do. The weight of all of it seems to be settling in, and we are feeling very tired. I guess it is only to be expected. Here is a recap of just what has been keeping us busy ...
Mike's parents came for a visit in August. Grace had a great time with her Grandma and Grandpa Chick, especially during their visit to the newly opened Millennium Park in Chicago. Hopefully we didn't wear them out too much. In an effort to keep ourselves distracted (and because it was badly needed), Mike and I decided to remodel our kitchen. The Ciacciarellis' visit came in the middle of the messiest part. They endured the less than perfect accommodations, and helped out a lot with the work. While the Ciacciarellis were in town Margaret's mom and sister decided to throw an early surprise birthday dinner for Margaret. It was a nice party that unfortunately ended badly. Margaret's mother fell down one step and broke her leg so bad that we had to call an ambulance to take her to the hospital. She had to have surgery, and has been stuck on her couch for weeks now.
Margaret's actual birthday in September brought back many memories of Minnesota. The day before she turned 30 Max went on the ventilator a second time. We never believed though that he wouldn't be here when Margaret turned 31. Like last year, Margaret's family tried very hard to give her a great birthday, and they did. Margaret said it was hard to feel too sorry for herself when Grace was so thrilled to celebrate. Grace just exudes a love for life.
Speaking of Miss Grace, she has been very active as usual. She started 3 day preschool as well as ballet and gymnastics. Grace caught her father's Olympic fever this summer, and after catching her trying to do some dangerous gymnastics moves, we decided she would benefit from some real instruction. She absolutely loves the class, and as she said the other day "It is just so much fun!" She has the same preschool teacher as last year, which helps as she is well aware of our situation. We were a little worried about the fact that her best friend would not be in her classes with her, but Grace seems to have adjusted well. It is awkward at times as Grace meets and wants to play with new kids. We always stress about the appropriate time to bring up the topic of Max, as we don't want anyone (especially kids) to be freaked out by our experience. So far we haven't had any problems, and the moms have been very understanding.
Grace continues to talk about and miss her brother. Her teacher even told us that Grace brings up Max about once a week. We are not sure how much she really remembers, but she often looks at pictures of him and asks to watch home movies of them playing together. Several of her friends have had recent additions to their families. This has brought up many questions for Grace. One day upon seeing my not-so-flat, grief-enlarged tummy Grace excitedly said "Mom you have a baby in your belly too!" (OUCH). I had to give her a mini genetics lesson on the spot. She is very bright and you can see her trying to work things out in her head. She recently asked me whether her best friend's new baby sister would need a transplant too. She sighed a huge sigh of relief when I told her no.
This summer we were contacted by the Ronald McDonald House in Minnesota and they asked us to be the guest speakers at the house's 25th Anniversary Gala. We were touched and honored to be asked, and of course said yes. It is always a good feeling to talk about Max and to share his story with people who are willing to try to understand our loss. But after the difficulty we had speaking at the hospital memorial, we were concerned about our ability to convey the dignity of Max's life in front of a large audience. First we were told that we would be making a trip to Minnesota the week before the gala to be taped with Don Shelby, anchorman of the local Channel 4. Then it was decided that Don would make a trip to our home that same weekend and interview us here. This turned out to be a great idea. We had to scramble a bit to get the house in order after the kitchen remodel, but it all got done. Don came with Tony, the RMH marketing manager, and Bill a cameraman who was donating his time. Don even brought his grown daughter who turned out to be a wonderful distraction for Grace. They shot footage all around the house and the discomfort of wearing the microphones was minimal. They shot us looking at movies on our computer, they shot us in the yard and then we settled in for the interview. Don Shelby made us feel very comfortable, and we were able to tell our story to one sympathetic interviewer (and a camera!) which was a lot easier than a room full of people. After the interview was over, we all had lunch and we spent some time with Don looking at pictures. He was very kind to us both on and off camera, and we are grateful for his patience and understanding.
Tony also asked us if we would come on stage at the gala with Don after the video played and perhaps say a few words after he acknowledged us. Our concern was that it would be hard to know what to say without seeing the finished piece. Thankfully, as we arrived in Minnesota on Friday, Tony met us and told us that we could see the DVD at his house. We were blown away. They chose all the best pictures of Max and the footage of Grace was edited so well with our interview. They had put our material across two segments. Everything was tasteful and dignified and we found ourselves caught up in our own story. It was very emotional. In addition there were also some very powerful pieces made about "The House That Love Built" in honor of the 25th anniversary and these were very moving.
After we killed a couple of hours at the hotel, we got dressed up -- Grace was so very proud to wear a ball gown -- and headed off the the gala. They had a huge ballroom decorated beautifully inside and out. Grace had a blast just watching the drinks being poured through an ice sculpture. Outside were tables of silent auction items and inside were tables for the guests and a stage for the speakers and band. The show began and it was a mix of emotional videos and sincere expressions of gratitude to so many generous donors with exciting live auction items. A puppy even went for $4100! As our videos played it was breathtaking to see our beautiful boy on screens so big. I know my heart was pounding and I'm sure Margaret's was too. It was such a relief when it was over and we could see so many people touched by Max's story. We still had another video to go and some more items went for auction. Some people around us leaned over and thanked us for telling his story. This made us feel really great.
Before I mention how the second video went I want to mention Rowan, Grace's friend from a year ago who was back for her brother's check-up. Her family is from Egypt and it is such a long trip for them. Rowan was so thrilled to see Grace and her mom told us that Rowan still had the picture Grace made for her the night before we moved out of the house. It was so nice for Grace to see her friend and to have a buddy in an otherwise adults-only event. It was also great to see Bryanna, a little girl whose treatment for cancer has lasted over a year and was about to begin a kidney transplant from her Dad. We wish them well.
As the second video began, I started to wonder why we were chosen to be the guest speakers. After 25 years, surely there were "happier" stories to tell, things that would better show the "success" of the house. But I realized that our story rightly emphasized the true mission of the Ronald McDonald House, to be the support for the FAMILIES of terminally ill children, and we are certainly very appreciative examples of this goal. The second video played and ended with Margaret's beautiful words of how in the context of confusion and turmoil that has been our year, the only thing that makes sense is the Ronald McDonald House. The only thing that matters is how you treat people, and the shining example of that is the staff and volunteers of the house. The crowd applauded and Margaret, Grace and I got on stage. Margaret said a few more words of thanks and then I introduced the Adopt-A-family Program. They were hoping to get 48 audience members to stand and pledge $500 each to adopt a family at the RMH during the holiday season. We were really touched when 81 people stood up. This part of the evening raised $40,000 and for that we are so very proud of our son.
Overall, the experience was quite overwhelming. For the rest of the night people approached us to thank us for sharing our story, to say what a beautiful boy Max was, and to wish us well. For the most part, Grace was unaware of how emotional the night was for us. Grace was more worried about Rowan seeing her waving on stage than she was about anything else. And truthfully, we were glad for that. Too much of Grace's innocence has been lost already and we were happy to see her having fun.
After the videos and auction, a band headed up on stage for some dancing and entertainment. Grace was looking forward to this part of the night, and she stood right in front of the stage doing her best "moves." She really didn't want to dance with anyone, only herself, and was quite annoyed that many people, having recognized her from the video, were coming up to her and patting her on the head. "People keep doing stuff to me!" she said in a huff at one point. But she was more than thrilled when I began to throw her up in the air during a few numbers.
Since the gala itself was so emotional, we decided against visiting the hospital, although it would have been nice to see many of Max's caregivers. Instead we opted to take Grace to Camp Snoopy at the Mall of America. She had a great time riding all of the rides, and left with a new Enchanted Princess doll from the Disney Store. The trip was both difficult and rewarding, sad and joyous. We are really glad we went.
The coming weeks are expected to be very busy. Halloween is fast approaching and with that Grace's annual Halloween party. Grace had one 2 years ago when Max was just a few months old, and great fun was had by all. Max, appropriately donned in a Superman costume, slept through the entire party. Last year we were in MN for Halloween, enjoying a great party at the RMH and suffering great heartache at the hospital. Mike's little sister, her husband and new baby will be visiting us for Halloween. We are all so excited to see them, and meet the newest addition to the family. In addition to the festivities in our house Grace has parties to attend at another friend's house, ballet, school, Mike's office, and our local RMH. We are sure to have candy coming out of our ears! Also somewhere in the middle of it all we will be attending another concert by Grace's favorite rock star. No wonder we are tired!
Thank you so much for checking in on us. Sorry for the lengthiness of this update. Happy Halloween!
-Margaret, Mike and Grace
The past few months have marked the anniversaries of so many important dates for Max. August 14th was the anniversary of Max's transplant. We were filled with such hope that day, and were so grateful for the second chance at life being given to our son. It was just 14 days after transplant that Max became very ill. We have been going back into our journal and reading our entries from last year. It is all so unbelievable to us, and sometimes feels like it was just yesterday we were in his hospital room with him. Our most difficult times are ahead of us, as we remember Max's sickest days. On November 26th it will be one year since he died. God we miss him so very much.
Since Max's death we have tried very hard to keep ourselves busy. Grace, of course, helps out with that. A very large part of us is proud that we have kept going, kept living life for each other and for Grace. We have never spent a day in bed crying, sent Grace to someone's house because we were too emotional, etc. Sometimes we wonder if this has been the smartest thing to do. The weight of all of it seems to be settling in, and we are feeling very tired. I guess it is only to be expected. Here is a recap of just what has been keeping us busy ...
Mike's parents came for a visit in August. Grace had a great time with her Grandma and Grandpa Chick, especially during their visit to the newly opened Millennium Park in Chicago. Hopefully we didn't wear them out too much. In an effort to keep ourselves distracted (and because it was badly needed), Mike and I decided to remodel our kitchen. The Ciacciarellis' visit came in the middle of the messiest part. They endured the less than perfect accommodations, and helped out a lot with the work. While the Ciacciarellis were in town Margaret's mom and sister decided to throw an early surprise birthday dinner for Margaret. It was a nice party that unfortunately ended badly. Margaret's mother fell down one step and broke her leg so bad that we had to call an ambulance to take her to the hospital. She had to have surgery, and has been stuck on her couch for weeks now.
Margaret's actual birthday in September brought back many memories of Minnesota. The day before she turned 30 Max went on the ventilator a second time. We never believed though that he wouldn't be here when Margaret turned 31. Like last year, Margaret's family tried very hard to give her a great birthday, and they did. Margaret said it was hard to feel too sorry for herself when Grace was so thrilled to celebrate. Grace just exudes a love for life.
Speaking of Miss Grace, she has been very active as usual. She started 3 day preschool as well as ballet and gymnastics. Grace caught her father's Olympic fever this summer, and after catching her trying to do some dangerous gymnastics moves, we decided she would benefit from some real instruction. She absolutely loves the class, and as she said the other day "It is just so much fun!" She has the same preschool teacher as last year, which helps as she is well aware of our situation. We were a little worried about the fact that her best friend would not be in her classes with her, but Grace seems to have adjusted well. It is awkward at times as Grace meets and wants to play with new kids. We always stress about the appropriate time to bring up the topic of Max, as we don't want anyone (especially kids) to be freaked out by our experience. So far we haven't had any problems, and the moms have been very understanding.
Grace continues to talk about and miss her brother. Her teacher even told us that Grace brings up Max about once a week. We are not sure how much she really remembers, but she often looks at pictures of him and asks to watch home movies of them playing together. Several of her friends have had recent additions to their families. This has brought up many questions for Grace. One day upon seeing my not-so-flat, grief-enlarged tummy Grace excitedly said "Mom you have a baby in your belly too!" (OUCH). I had to give her a mini genetics lesson on the spot. She is very bright and you can see her trying to work things out in her head. She recently asked me whether her best friend's new baby sister would need a transplant too. She sighed a huge sigh of relief when I told her no.
This summer we were contacted by the Ronald McDonald House in Minnesota and they asked us to be the guest speakers at the house's 25th Anniversary Gala. We were touched and honored to be asked, and of course said yes. It is always a good feeling to talk about Max and to share his story with people who are willing to try to understand our loss. But after the difficulty we had speaking at the hospital memorial, we were concerned about our ability to convey the dignity of Max's life in front of a large audience. First we were told that we would be making a trip to Minnesota the week before the gala to be taped with Don Shelby, anchorman of the local Channel 4. Then it was decided that Don would make a trip to our home that same weekend and interview us here. This turned out to be a great idea. We had to scramble a bit to get the house in order after the kitchen remodel, but it all got done. Don came with Tony, the RMH marketing manager, and Bill a cameraman who was donating his time. Don even brought his grown daughter who turned out to be a wonderful distraction for Grace. They shot footage all around the house and the discomfort of wearing the microphones was minimal. They shot us looking at movies on our computer, they shot us in the yard and then we settled in for the interview. Don Shelby made us feel very comfortable, and we were able to tell our story to one sympathetic interviewer (and a camera!) which was a lot easier than a room full of people. After the interview was over, we all had lunch and we spent some time with Don looking at pictures. He was very kind to us both on and off camera, and we are grateful for his patience and understanding.
Tony also asked us if we would come on stage at the gala with Don after the video played and perhaps say a few words after he acknowledged us. Our concern was that it would be hard to know what to say without seeing the finished piece. Thankfully, as we arrived in Minnesota on Friday, Tony met us and told us that we could see the DVD at his house. We were blown away. They chose all the best pictures of Max and the footage of Grace was edited so well with our interview. They had put our material across two segments. Everything was tasteful and dignified and we found ourselves caught up in our own story. It was very emotional. In addition there were also some very powerful pieces made about "The House That Love Built" in honor of the 25th anniversary and these were very moving.
After we killed a couple of hours at the hotel, we got dressed up -- Grace was so very proud to wear a ball gown -- and headed off the the gala. They had a huge ballroom decorated beautifully inside and out. Grace had a blast just watching the drinks being poured through an ice sculpture. Outside were tables of silent auction items and inside were tables for the guests and a stage for the speakers and band. The show began and it was a mix of emotional videos and sincere expressions of gratitude to so many generous donors with exciting live auction items. A puppy even went for $4100! As our videos played it was breathtaking to see our beautiful boy on screens so big. I know my heart was pounding and I'm sure Margaret's was too. It was such a relief when it was over and we could see so many people touched by Max's story. We still had another video to go and some more items went for auction. Some people around us leaned over and thanked us for telling his story. This made us feel really great.
Before I mention how the second video went I want to mention Rowan, Grace's friend from a year ago who was back for her brother's check-up. Her family is from Egypt and it is such a long trip for them. Rowan was so thrilled to see Grace and her mom told us that Rowan still had the picture Grace made for her the night before we moved out of the house. It was so nice for Grace to see her friend and to have a buddy in an otherwise adults-only event. It was also great to see Bryanna, a little girl whose treatment for cancer has lasted over a year and was about to begin a kidney transplant from her Dad. We wish them well.
As the second video began, I started to wonder why we were chosen to be the guest speakers. After 25 years, surely there were "happier" stories to tell, things that would better show the "success" of the house. But I realized that our story rightly emphasized the true mission of the Ronald McDonald House, to be the support for the FAMILIES of terminally ill children, and we are certainly very appreciative examples of this goal. The second video played and ended with Margaret's beautiful words of how in the context of confusion and turmoil that has been our year, the only thing that makes sense is the Ronald McDonald House. The only thing that matters is how you treat people, and the shining example of that is the staff and volunteers of the house. The crowd applauded and Margaret, Grace and I got on stage. Margaret said a few more words of thanks and then I introduced the Adopt-A-family Program. They were hoping to get 48 audience members to stand and pledge $500 each to adopt a family at the RMH during the holiday season. We were really touched when 81 people stood up. This part of the evening raised $40,000 and for that we are so very proud of our son.
Overall, the experience was quite overwhelming. For the rest of the night people approached us to thank us for sharing our story, to say what a beautiful boy Max was, and to wish us well. For the most part, Grace was unaware of how emotional the night was for us. Grace was more worried about Rowan seeing her waving on stage than she was about anything else. And truthfully, we were glad for that. Too much of Grace's innocence has been lost already and we were happy to see her having fun.
After the videos and auction, a band headed up on stage for some dancing and entertainment. Grace was looking forward to this part of the night, and she stood right in front of the stage doing her best "moves." She really didn't want to dance with anyone, only herself, and was quite annoyed that many people, having recognized her from the video, were coming up to her and patting her on the head. "People keep doing stuff to me!" she said in a huff at one point. But she was more than thrilled when I began to throw her up in the air during a few numbers.
Since the gala itself was so emotional, we decided against visiting the hospital, although it would have been nice to see many of Max's caregivers. Instead we opted to take Grace to Camp Snoopy at the Mall of America. She had a great time riding all of the rides, and left with a new Enchanted Princess doll from the Disney Store. The trip was both difficult and rewarding, sad and joyous. We are really glad we went.
The coming weeks are expected to be very busy. Halloween is fast approaching and with that Grace's annual Halloween party. Grace had one 2 years ago when Max was just a few months old, and great fun was had by all. Max, appropriately donned in a Superman costume, slept through the entire party. Last year we were in MN for Halloween, enjoying a great party at the RMH and suffering great heartache at the hospital. Mike's little sister, her husband and new baby will be visiting us for Halloween. We are all so excited to see them, and meet the newest addition to the family. In addition to the festivities in our house Grace has parties to attend at another friend's house, ballet, school, Mike's office, and our local RMH. We are sure to have candy coming out of our ears! Also somewhere in the middle of it all we will be attending another concert by Grace's favorite rock star. No wonder we are tired!
Thank you so much for checking in on us. Sorry for the lengthiness of this update. Happy Halloween!
-Margaret, Mike and Grace
posted by Mike Ciacciarelli
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