The Holidays Came and Went
It is so strange not to start an update with the number of days post transplant and Max's white blood count. But then again, life is strange these days. We are doing well, as well as can be expected, maybe even better than some people expected. We miss Max more and more every single day. I really do not think we will ever get used to the fact that he is gone.
The holidays came and went, and we celebrated for Grace. Without her I do not know where we would be. With the help of my brother, sisters and two of my sister's friends we cooked dinner at the Ronald McDonald House near Loyola Medical Center (where Max was born and lived in the NICU for almost 6 weeks). At first it seemed like no one was going to show up to the meal and we were very disappointed. But then more and more people started arriving from the hospital and it was a success. The families were very appreciative. We were so grateful to have the opportunity to honor Max in that way.
For some very strange reason, New Years Eve was harder than Christmas. We have never celebrated New Years before, it was just hard to accept the fact that we were moving into a new year without our son.
Mike returned to work on Monday the 5th after being off for 6 months. We were SO FORTUNATE that he was able to get the time off to be in Minnesota with us. Mike would have never forgiven himself had he missed that time with Max. We spent the past month catching up on some Mike and Margaret time and Grace time. Even though we were all out in MN, we were rarely together, since one of us was always at Max's bedside. To have this past month, with only each other and our daughter has been a very special time. Mike and I saw a few movies and even went to a play. It almost seemed gluttonous to have so much time together. We took Grace to museums and new restaurants, and we spent a lot of time with family and friends. Right before Max died Mike and I took Grace to dinner while Mike's mom and Aunt sat with Max. It almost seemed like this past month was an extended Gracie date and someone was sitting with Max. At times we feel like we should be able to walk out our door and walk over to Fairview hospital to be with Max like we did so many times in MN. Mike's return to work ended the unspoken fantasy land we have been living in the past month. Now it is back to "life as usual" and we keep wondering how we can ever feel normal again.
Grace has been doing well. She talks about her brother all of the time, to anyone who will listen to her. She struck up a conversation with a woman at the bakery about Max, she told a woman waiting for an elevator at the museum about him, and she told a woman at the mall with a son the same age as Max '"my brother died in Minnesota, " leaving the woman a little shocked. Most times she is much more articulate than that. She explains that he was very sick, that we had to move to MN, and that he is in heaven now. When her friend asked her "how is Max going to get better, how is he going to get back from heaven?" Grace explained that Max was already better in heaven and that he was not coming back. Her eyes then filled with tears.
Grace started school this past week and attended her second ballet class. You would think she would be a little scared, especially since all of the kids have been in school for months, but not our Grace. She went in and made herself at home, barely taking the time to say goodbye to us. This week will be busy, as her birthday is coming up and Thursday will be her day at school to pass out treats and do Show and Tell. It is so hard to believe she is turning 4. While she's at school twice a week I will have some time to myself. I feel like I should be spending that time with Max, taking him to therapy, or just enjoying him. Instead, I will try to catch up on things around the house and maybe do some more volunteering. For now, distraction seems to be our best coping strategy.
We want to extend our warmest thanks to those who have continued to check in on us. It means so very much, and it truly keeps us going. We are very behind on thank you cards and emails and for that we are very sorry. Speaking of keeping in touch, I have misplaced our address book and therefore have lost all of our contact information. To our family and friends (especially our friends in MN), please send us an email with your number and address so we can keep in touch.
Take Care and Happy New Year,
Margaret, Mike and Grace
The holidays came and went, and we celebrated for Grace. Without her I do not know where we would be. With the help of my brother, sisters and two of my sister's friends we cooked dinner at the Ronald McDonald House near Loyola Medical Center (where Max was born and lived in the NICU for almost 6 weeks). At first it seemed like no one was going to show up to the meal and we were very disappointed. But then more and more people started arriving from the hospital and it was a success. The families were very appreciative. We were so grateful to have the opportunity to honor Max in that way.
For some very strange reason, New Years Eve was harder than Christmas. We have never celebrated New Years before, it was just hard to accept the fact that we were moving into a new year without our son.
Mike returned to work on Monday the 5th after being off for 6 months. We were SO FORTUNATE that he was able to get the time off to be in Minnesota with us. Mike would have never forgiven himself had he missed that time with Max. We spent the past month catching up on some Mike and Margaret time and Grace time. Even though we were all out in MN, we were rarely together, since one of us was always at Max's bedside. To have this past month, with only each other and our daughter has been a very special time. Mike and I saw a few movies and even went to a play. It almost seemed gluttonous to have so much time together. We took Grace to museums and new restaurants, and we spent a lot of time with family and friends. Right before Max died Mike and I took Grace to dinner while Mike's mom and Aunt sat with Max. It almost seemed like this past month was an extended Gracie date and someone was sitting with Max. At times we feel like we should be able to walk out our door and walk over to Fairview hospital to be with Max like we did so many times in MN. Mike's return to work ended the unspoken fantasy land we have been living in the past month. Now it is back to "life as usual" and we keep wondering how we can ever feel normal again.
Grace has been doing well. She talks about her brother all of the time, to anyone who will listen to her. She struck up a conversation with a woman at the bakery about Max, she told a woman waiting for an elevator at the museum about him, and she told a woman at the mall with a son the same age as Max '"my brother died in Minnesota, " leaving the woman a little shocked. Most times she is much more articulate than that. She explains that he was very sick, that we had to move to MN, and that he is in heaven now. When her friend asked her "how is Max going to get better, how is he going to get back from heaven?" Grace explained that Max was already better in heaven and that he was not coming back. Her eyes then filled with tears.
Grace started school this past week and attended her second ballet class. You would think she would be a little scared, especially since all of the kids have been in school for months, but not our Grace. She went in and made herself at home, barely taking the time to say goodbye to us. This week will be busy, as her birthday is coming up and Thursday will be her day at school to pass out treats and do Show and Tell. It is so hard to believe she is turning 4. While she's at school twice a week I will have some time to myself. I feel like I should be spending that time with Max, taking him to therapy, or just enjoying him. Instead, I will try to catch up on things around the house and maybe do some more volunteering. For now, distraction seems to be our best coping strategy.
We want to extend our warmest thanks to those who have continued to check in on us. It means so very much, and it truly keeps us going. We are very behind on thank you cards and emails and for that we are very sorry. Speaking of keeping in touch, I have misplaced our address book and therefore have lost all of our contact information. To our family and friends (especially our friends in MN), please send us an email with your number and address so we can keep in touch.
Take Care and Happy New Year,
Margaret, Mike and Grace
posted by Mike Ciacciarelli
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