New Year Update
Our last update ended right before Halloween, so I guess we should begin there.
Halloween was filled with LOTS of activity and fun for us, especially Miss Grace. She was beautiful as Sleeping Beauty, and had a wonderful time at her school party, cooking at the RMH and at her own Halloween bash at our house. A highlight was Mike being wrapped in toilet paper as part of the game "Turn a Daddy into a Mummy." She especially loved meeting her new cousin Vivienne that weekend. Grace has such a love for babies and other children, and it showed as she helped her Auntie Peeps care for Viv. Amidst all the other partying, we managed to also squeeze in a Ralph's World concert, one of Grace's favorite musicians.
The festivities of Halloween helped keep our minds off of the anniversary it
marked: one year prior Max had become extremely ill, and it was the beginning of the end of his life. Once the excitement had died down, and the company had gone home, reality set in once again as we began the month of November.
November was a month of remembering and reflecting. At times we grieved harder than we had since Max died, other times we felt pride and relief that we made it through the year. The impending threat of Thanksgiving week loomed over us, as we wondered and worried how we would handle the
anniversary of our son's death. As the world around us worried what it
would be serving for Thanksgiving dinner, we were worried that the anniversary would mean an end to the significance of each day. After all, every day for the first year we could remember where we were the year before, and how our son was with us. After the anniversary, each day now
means that it has been more than a year, and it seems too far away. In
April he will be gone longer than he was here, and that too, is an anniversary of sorts, and a reminder of the awful cruelty of his fate.
One of the harder moments involved bringing in a family photo for Grace's class Thanksgiving bulletin board. Looking through old photos during an already tough month brought back so many memories and so much grief. Max was such a beautiful and happy boy, how did all of this happen to him? To look at ourselves in those photos is to look at different people - so young and naive, so completely unaware of what was about to happen to their child and their family. What made the assignment extra hard was that we have only a couple of pictures of the four of us together, and that there will never be an opportunity to take another family photo again. In the years to come as Grace grows older and is asked to bring in family photos, we will no longer be able to present a picture of her at age three with her brother, but will one day have to turn in a picture of only Grace and us.
While the date of Max's death (Nov. 26th) was the day before Thanksgiving, this year it fell on the day after. So it was almost as if we recognized two anniversaries. This year we spent the day before Thanksgiving in Grace's classroom, at a "Thanksgiving Feast" of pumpkin pudding, muffins and popcorn that the children made. Grace was dressed as a pilgrim, and we watched their Thanksgiving presentation with joy and sadness. The bulletin board was a main attraction, and a reminder to us of what we had lost. Afterwards we went home where we found numerous packages and cards on our front porch. So many people remembered us, and most importantly remembered Max, that it truly touched our hearts and lifted our spirits (or maybe that was the candy elevating our blood sugar?).
Since we did not know how we'd handle the holiday we opted out of a big family Thanksgiving dinner and instead made reservations for the three of us at one of our favorite restaurants. The morning was a very emotional one, and we stopped at the cemetery on the way to dinner. Once there at Max's grave we felt much calmer (as we always seem to do), and we headed off to celebrate Thanksgiving, much more for Grace than for any other reason. We thought the restaurant would be somewhat of a lonely hearts club, but it was actually very crowded and festive. Our mood improved (especially after so much yummy food and dessert), and after dinner we spent some time with family at Margaret's sister's house. There Grace got to spend some time with cousins and friends, who were helpful in shielding her from our deepest sadness. Auntie Beth was kind enough to let Grace sleep over and we headed home to be by ourselves and our grief.
The next morning was the actual date of Max's death. Most years we'd be out shopping at 6 am at the crazy day after Thanksgiving sales, this year we were buried in grief. We got ourselves together, stopped at the flower shop for some arrangements for Max's grave, and headed to the cemetery to visit our son. Afterwards we picked up Grace and once we saw her we started to feel a bit better. It is amazing what a light Grace is in our lives. By the end of the day we even felt up to taking Grace to the Holiday Lights celebration at the zoo. We have literally dragged ourselves through this year, for Grace and for each other. The desire for her to have a good and happy life has forced us to face situations we would not have faced, and do things we would not have done to make ourselves feel better.
Though hard, this December was easier than last. We were so numb last year we barely remember what we did. This year we were actually able to enjoy ourselves. Grace seems to have developed her mother's love for shopping, and so we had many enjoyable trips to the mall with her to buy special gifts for family and friends. She also enjoyed the holiday windows in downtown Chicago, a Christmas party at school and seeing Santa at Mike's work. December was another busy month for our girl.
We were scheduled to cook at the RMH Christmas Eve, but thanks to a triple case of strep throat in our house, we were unable to go. Luckily, Margaret's siblings took all of the food and decorations to the house and did a great job. We were disappointed to have missed an opportunity to honor Max's memory in person, but we know that his spirit was felt. Thanks to Margaret's mom, sibs and cousin for their help that night. By Christmas day we were all feeling much better. As usual, Santa was very generous. Grace attacked the presents with gusto, but even she pooped out at the end, and we had to help her open the last few. We had a nice quiet dinner with Margaret's family that evening.
Grace was looking forward to New Year's weekend almost as much as Christmas, due to the arrival of her cousins Anne, Ems and Veronica from Maryland. It was amazing to see her so entertained without us. Grace has always been independent, but since Max's death we have been her main playmates. With the girls around it was almost as if we were invisible. We had a blast New Year's Eve, letting the girls stay up until "New York midnight," banging on pots and pans, blowing noise makers, and screaming when the ball dropped. We were all very sad to see them return home.
All of the excitement of New Years must have taken its toll on Grace's recuperating body, and she caught a nasty cold soon after, followed by the stomach flu. You would think with our experience we'd have germ control down pat, but despite all of our antibacterial wipes, we have had a lot of sickness this year. It is hard not to panic when Grace gets sick, and trips to the doctor bring back memories and much anxiety. Grace seems to get anxious herself at the mention of illness. Recently she told us that she worries about dying, but knows it would be okay because she would be with Max. We have to remind her that she does not have Hurler Syndrome like her brother. Luckily, Grace is now feeling much better just in time for her Birthday!!!!!!!!
Yes, our little girl is turning 5 this week, and as we type this we have so many good memories of the awesome party we had for her this weekend. She was the host of about 20 kids at a children's gym and everyone had a fantastic time. As we drove away, Grace said, "Today was the happiest day ever." Of all the things you want to hear from your kid after you throw them a party, that's about the best.
We cannot believe how time flies. Birthdays have always been important to us, but having only celebrated one birthday with Max, they have even greater meaning to us now. We simply cannot understand parents who do not have parties for their kids. We are so blessed to have Grace, and so proud of her. She is a miracle to us. Her pregnancy was difficult and scary, and she was born premature. She could have very easily been born with Hurler instead of just being a carrier. And despite all that she has been put through the past few years, she remains the smartest, prettiest, friendliest, most social, adaptable, and wonderful child in the world. Can you tell how much we love her? She is our Amazing Grace.
Well, we have many post-party thank-yous to write, and also some exercise too. Yes, that is right, we are trying to work off some of that grief weight. With a Christmas purchase of a treadmill (or as Grace calls it, the Dread Mill), maybe we will be a bit smaller the next time we see some of you.
As always, thanks for checking in on us. Hug and kiss and take lots of pictures of your loved ones!
-Mike, Margaret and Grace
Halloween was filled with LOTS of activity and fun for us, especially Miss Grace. She was beautiful as Sleeping Beauty, and had a wonderful time at her school party, cooking at the RMH and at her own Halloween bash at our house. A highlight was Mike being wrapped in toilet paper as part of the game "Turn a Daddy into a Mummy." She especially loved meeting her new cousin Vivienne that weekend. Grace has such a love for babies and other children, and it showed as she helped her Auntie Peeps care for Viv. Amidst all the other partying, we managed to also squeeze in a Ralph's World concert, one of Grace's favorite musicians.
The festivities of Halloween helped keep our minds off of the anniversary it
marked: one year prior Max had become extremely ill, and it was the beginning of the end of his life. Once the excitement had died down, and the company had gone home, reality set in once again as we began the month of November.
November was a month of remembering and reflecting. At times we grieved harder than we had since Max died, other times we felt pride and relief that we made it through the year. The impending threat of Thanksgiving week loomed over us, as we wondered and worried how we would handle the
anniversary of our son's death. As the world around us worried what it
would be serving for Thanksgiving dinner, we were worried that the anniversary would mean an end to the significance of each day. After all, every day for the first year we could remember where we were the year before, and how our son was with us. After the anniversary, each day now
means that it has been more than a year, and it seems too far away. In
April he will be gone longer than he was here, and that too, is an anniversary of sorts, and a reminder of the awful cruelty of his fate.
One of the harder moments involved bringing in a family photo for Grace's class Thanksgiving bulletin board. Looking through old photos during an already tough month brought back so many memories and so much grief. Max was such a beautiful and happy boy, how did all of this happen to him? To look at ourselves in those photos is to look at different people - so young and naive, so completely unaware of what was about to happen to their child and their family. What made the assignment extra hard was that we have only a couple of pictures of the four of us together, and that there will never be an opportunity to take another family photo again. In the years to come as Grace grows older and is asked to bring in family photos, we will no longer be able to present a picture of her at age three with her brother, but will one day have to turn in a picture of only Grace and us.
While the date of Max's death (Nov. 26th) was the day before Thanksgiving, this year it fell on the day after. So it was almost as if we recognized two anniversaries. This year we spent the day before Thanksgiving in Grace's classroom, at a "Thanksgiving Feast" of pumpkin pudding, muffins and popcorn that the children made. Grace was dressed as a pilgrim, and we watched their Thanksgiving presentation with joy and sadness. The bulletin board was a main attraction, and a reminder to us of what we had lost. Afterwards we went home where we found numerous packages and cards on our front porch. So many people remembered us, and most importantly remembered Max, that it truly touched our hearts and lifted our spirits (or maybe that was the candy elevating our blood sugar?).
Since we did not know how we'd handle the holiday we opted out of a big family Thanksgiving dinner and instead made reservations for the three of us at one of our favorite restaurants. The morning was a very emotional one, and we stopped at the cemetery on the way to dinner. Once there at Max's grave we felt much calmer (as we always seem to do), and we headed off to celebrate Thanksgiving, much more for Grace than for any other reason. We thought the restaurant would be somewhat of a lonely hearts club, but it was actually very crowded and festive. Our mood improved (especially after so much yummy food and dessert), and after dinner we spent some time with family at Margaret's sister's house. There Grace got to spend some time with cousins and friends, who were helpful in shielding her from our deepest sadness. Auntie Beth was kind enough to let Grace sleep over and we headed home to be by ourselves and our grief.
The next morning was the actual date of Max's death. Most years we'd be out shopping at 6 am at the crazy day after Thanksgiving sales, this year we were buried in grief. We got ourselves together, stopped at the flower shop for some arrangements for Max's grave, and headed to the cemetery to visit our son. Afterwards we picked up Grace and once we saw her we started to feel a bit better. It is amazing what a light Grace is in our lives. By the end of the day we even felt up to taking Grace to the Holiday Lights celebration at the zoo. We have literally dragged ourselves through this year, for Grace and for each other. The desire for her to have a good and happy life has forced us to face situations we would not have faced, and do things we would not have done to make ourselves feel better.
Though hard, this December was easier than last. We were so numb last year we barely remember what we did. This year we were actually able to enjoy ourselves. Grace seems to have developed her mother's love for shopping, and so we had many enjoyable trips to the mall with her to buy special gifts for family and friends. She also enjoyed the holiday windows in downtown Chicago, a Christmas party at school and seeing Santa at Mike's work. December was another busy month for our girl.
We were scheduled to cook at the RMH Christmas Eve, but thanks to a triple case of strep throat in our house, we were unable to go. Luckily, Margaret's siblings took all of the food and decorations to the house and did a great job. We were disappointed to have missed an opportunity to honor Max's memory in person, but we know that his spirit was felt. Thanks to Margaret's mom, sibs and cousin for their help that night. By Christmas day we were all feeling much better. As usual, Santa was very generous. Grace attacked the presents with gusto, but even she pooped out at the end, and we had to help her open the last few. We had a nice quiet dinner with Margaret's family that evening.
Grace was looking forward to New Year's weekend almost as much as Christmas, due to the arrival of her cousins Anne, Ems and Veronica from Maryland. It was amazing to see her so entertained without us. Grace has always been independent, but since Max's death we have been her main playmates. With the girls around it was almost as if we were invisible. We had a blast New Year's Eve, letting the girls stay up until "New York midnight," banging on pots and pans, blowing noise makers, and screaming when the ball dropped. We were all very sad to see them return home.
All of the excitement of New Years must have taken its toll on Grace's recuperating body, and she caught a nasty cold soon after, followed by the stomach flu. You would think with our experience we'd have germ control down pat, but despite all of our antibacterial wipes, we have had a lot of sickness this year. It is hard not to panic when Grace gets sick, and trips to the doctor bring back memories and much anxiety. Grace seems to get anxious herself at the mention of illness. Recently she told us that she worries about dying, but knows it would be okay because she would be with Max. We have to remind her that she does not have Hurler Syndrome like her brother. Luckily, Grace is now feeling much better just in time for her Birthday!!!!!!!!
Yes, our little girl is turning 5 this week, and as we type this we have so many good memories of the awesome party we had for her this weekend. She was the host of about 20 kids at a children's gym and everyone had a fantastic time. As we drove away, Grace said, "Today was the happiest day ever." Of all the things you want to hear from your kid after you throw them a party, that's about the best.
We cannot believe how time flies. Birthdays have always been important to us, but having only celebrated one birthday with Max, they have even greater meaning to us now. We simply cannot understand parents who do not have parties for their kids. We are so blessed to have Grace, and so proud of her. She is a miracle to us. Her pregnancy was difficult and scary, and she was born premature. She could have very easily been born with Hurler instead of just being a carrier. And despite all that she has been put through the past few years, she remains the smartest, prettiest, friendliest, most social, adaptable, and wonderful child in the world. Can you tell how much we love her? She is our Amazing Grace.
Well, we have many post-party thank-yous to write, and also some exercise too. Yes, that is right, we are trying to work off some of that grief weight. With a Christmas purchase of a treadmill (or as Grace calls it, the Dread Mill), maybe we will be a bit smaller the next time we see some of you.
As always, thanks for checking in on us. Hug and kiss and take lots of pictures of your loved ones!
-Mike, Margaret and Grace
posted by Mike Ciacciarelli
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