Our Mailbox Has Been Full
The holidays are here and we are preparing the best we can without our son. I've been thinking for a long time about what to write in this space. It's hard to know if people are still reading, but it's been a few weeks and even if there's no one to read this, it will do some good to get some things down.
Surely people want to know how we are doing. I think we are dealing with things well. We have our moments (sometimes much longer than a "moment"), but overall we are doing well. Other families who have been through our horror have reached out and been very helpful. Thank you, and yes, you are the only people that can truly say "I know how you feel." We still have no regrets for the decisions we were faced with at the end of Max's life, but we will never understand or be able to justify the suffering that he endured prior to his final peace.
Our mailbox has been filled since we've been home, first with sympathy cards then with a mix of sympathy and holiday cards, and now mostly holiday notes. We have to say thank you to all of you who did take the time to write to us. Many of you couldn't make it to Max's services and we know from your cards how much you care. Thank you. Special thanks to the nurses and therapists who wrote from Fairview. Such a simple gesture, but such a deep impact. We miss you all. Many of you have written that 4A is not the same without us, and that is very kind. We would give anything to be back with all of you.
I'm still not back at work and Margaret and I have strived to make the most of this extended generosity (thank you Optimus!) to spend special time with Grace. We have been to the Play Zoo, the Children's Museum in Oak Park, brought her to her school and ballet classes (both begin after the New Year), gone on a carriage ride downtown in Chicago, and we've had great mommy-daughter or daddy-daughter time out shopping for each other. This time with her is very special. Since Max was born she has been cared for with less direct attention, and it is a pleasure to focus on her as a beautiful little girl and not as "the sibling" of her sick brother. She sure misses her brother, though. She talks about him every day and night. She even made a pretend call to heaven on the phone (only she knows the exact number). We try to have our breakdowns away from her, to lessen her burden. But she too is hurting, and we think hurting rather deeply. She doesn't ask "Why?" thank God, because that's unanswerable. But she does miss him. And she's lonely. She spent the last five months with other kids accessible by walking down a hallway or going to an event at the Ronald McDonald House. So now she's home, and her friends have their own schedules, and they live down the block, and you can't just knock on their door.
And then there's my sister. Unfortunately for us, especially for Grace, my sister moved to Maryland. Her husband began a great new opportunity and they left this week. Grace had really enjoyed the time with her three cousins since she's been back, and it's a blow to have that loss on top of Max. We know that they're going to do great in Maryland and they've got each other to lean on, but Grace is lonely without her brother and now without her cousins. Hopefully she can make new friends, but it will be hard for us to establish friendships with people who have no understanding of what we've been through. That's why the loss of family at this time creates such loneliness. But we have to persevere because the reality of life for us is that the overwhelming majority of people in our life will have no understanding of our pain and suffering.
We've been slowly going through Max's things and his room and some of the stuff that was "easier" to pack up and donate was given to a family that we heard about through Max's therapists. They have a little baby who was born at 24 weeks and has made it home from the neonatal unit and the family has sort of been "adopted" by the nurses and caregivers at Loyola. We feel good knowing that Max is helping those in need during the holidays. And in that spirit, Margaret volunteered to cook Christmas Eve dinner at the Ronald McDonald House near Loyola. We will be spending the whole day there, decorating and cooking and it's the best way for us to think of and support the Ronald McDonald House family that supported us so wonderfully. It will be good for our souls to be there.
We have encountered our fair share of "weird reactions" to us. People who can't look us in the eye. People who didn't call or write until Max was dead now feel "terrible" and want us to relieve their guilt. People who say incredibly inappropriate things, etc. We know it is hard for people to be around us. They do not know what to say or do. But as hard as it is for people to be around us, it is SO MUCH harder to be us. Anyone who has followed this journal knows that we are not going to fall apart at the mere mention of Max's name. In fact, we love to talk about our wonderful son and the wonderful people we have encountered the past 6 months. Please do not be shy, we are not. Some people we haven't seen or talked to since we left are acting as if nothing had ever happened, like our beautiful son never existed. It is crushing. We've tried to stay positive. It is very hard to find the silver lining in a storm cloud. We did receive some generous meals from our friends and family and while it might seem like a small gesture, it is truly the nicest thing you can do, and it means more than you all know.
We've tried to keep up with the other families whose stories have touched us and we've been reading of families having to spend the holidays without their children and families who know that their child's life is their best Christmas gift. Our thoughts are with all of you. Please know that while we may be writing less, we will be checking in more as our lives stabilize. We hope that Max's spirit and giant heart are looking down on all of you in
whatever situation you may be in. We hope that people reading this
continue to check on the other families that check on us.
An Eleanor Roosevelt quote read on a Christmas card:
"Yesterday is history, tomorrow is a mystery, today is a gift. That's why they call it the PRESENT" Please consider sharing your gifts with others.
While nothing can justify Max's suffering and death, we would like to know that good things have resulted from it. PLEASE consider volunteering. Support your local Ronald McDonald House (cook a meal there, drop off food, collect pop tabs and donate them for recycling). Write to the guest books of Max's Hurler friends. These are such small sacrifices that mean the world to people going through similar situations to what we went through.
It's not what's under the tree, it's who's with you when you get there. We miss our Max so much. Please hug your kids and celebrate the joy, recklessness, and terror of children at holiday time.
Merry Christmas to all, and love to all,
--Mike, Margaret, and Grace
Surely people want to know how we are doing. I think we are dealing with things well. We have our moments (sometimes much longer than a "moment"), but overall we are doing well. Other families who have been through our horror have reached out and been very helpful. Thank you, and yes, you are the only people that can truly say "I know how you feel." We still have no regrets for the decisions we were faced with at the end of Max's life, but we will never understand or be able to justify the suffering that he endured prior to his final peace.
Our mailbox has been filled since we've been home, first with sympathy cards then with a mix of sympathy and holiday cards, and now mostly holiday notes. We have to say thank you to all of you who did take the time to write to us. Many of you couldn't make it to Max's services and we know from your cards how much you care. Thank you. Special thanks to the nurses and therapists who wrote from Fairview. Such a simple gesture, but such a deep impact. We miss you all. Many of you have written that 4A is not the same without us, and that is very kind. We would give anything to be back with all of you.
I'm still not back at work and Margaret and I have strived to make the most of this extended generosity (thank you Optimus!) to spend special time with Grace. We have been to the Play Zoo, the Children's Museum in Oak Park, brought her to her school and ballet classes (both begin after the New Year), gone on a carriage ride downtown in Chicago, and we've had great mommy-daughter or daddy-daughter time out shopping for each other. This time with her is very special. Since Max was born she has been cared for with less direct attention, and it is a pleasure to focus on her as a beautiful little girl and not as "the sibling" of her sick brother. She sure misses her brother, though. She talks about him every day and night. She even made a pretend call to heaven on the phone (only she knows the exact number). We try to have our breakdowns away from her, to lessen her burden. But she too is hurting, and we think hurting rather deeply. She doesn't ask "Why?" thank God, because that's unanswerable. But she does miss him. And she's lonely. She spent the last five months with other kids accessible by walking down a hallway or going to an event at the Ronald McDonald House. So now she's home, and her friends have their own schedules, and they live down the block, and you can't just knock on their door.
And then there's my sister. Unfortunately for us, especially for Grace, my sister moved to Maryland. Her husband began a great new opportunity and they left this week. Grace had really enjoyed the time with her three cousins since she's been back, and it's a blow to have that loss on top of Max. We know that they're going to do great in Maryland and they've got each other to lean on, but Grace is lonely without her brother and now without her cousins. Hopefully she can make new friends, but it will be hard for us to establish friendships with people who have no understanding of what we've been through. That's why the loss of family at this time creates such loneliness. But we have to persevere because the reality of life for us is that the overwhelming majority of people in our life will have no understanding of our pain and suffering.
We've been slowly going through Max's things and his room and some of the stuff that was "easier" to pack up and donate was given to a family that we heard about through Max's therapists. They have a little baby who was born at 24 weeks and has made it home from the neonatal unit and the family has sort of been "adopted" by the nurses and caregivers at Loyola. We feel good knowing that Max is helping those in need during the holidays. And in that spirit, Margaret volunteered to cook Christmas Eve dinner at the Ronald McDonald House near Loyola. We will be spending the whole day there, decorating and cooking and it's the best way for us to think of and support the Ronald McDonald House family that supported us so wonderfully. It will be good for our souls to be there.
We have encountered our fair share of "weird reactions" to us. People who can't look us in the eye. People who didn't call or write until Max was dead now feel "terrible" and want us to relieve their guilt. People who say incredibly inappropriate things, etc. We know it is hard for people to be around us. They do not know what to say or do. But as hard as it is for people to be around us, it is SO MUCH harder to be us. Anyone who has followed this journal knows that we are not going to fall apart at the mere mention of Max's name. In fact, we love to talk about our wonderful son and the wonderful people we have encountered the past 6 months. Please do not be shy, we are not. Some people we haven't seen or talked to since we left are acting as if nothing had ever happened, like our beautiful son never existed. It is crushing. We've tried to stay positive. It is very hard to find the silver lining in a storm cloud. We did receive some generous meals from our friends and family and while it might seem like a small gesture, it is truly the nicest thing you can do, and it means more than you all know.
We've tried to keep up with the other families whose stories have touched us and we've been reading of families having to spend the holidays without their children and families who know that their child's life is their best Christmas gift. Our thoughts are with all of you. Please know that while we may be writing less, we will be checking in more as our lives stabilize. We hope that Max's spirit and giant heart are looking down on all of you in
whatever situation you may be in. We hope that people reading this
continue to check on the other families that check on us.
An Eleanor Roosevelt quote read on a Christmas card:
"Yesterday is history, tomorrow is a mystery, today is a gift. That's why they call it the PRESENT" Please consider sharing your gifts with others.
While nothing can justify Max's suffering and death, we would like to know that good things have resulted from it. PLEASE consider volunteering. Support your local Ronald McDonald House (cook a meal there, drop off food, collect pop tabs and donate them for recycling). Write to the guest books of Max's Hurler friends. These are such small sacrifices that mean the world to people going through similar situations to what we went through.
It's not what's under the tree, it's who's with you when you get there. We miss our Max so much. Please hug your kids and celebrate the joy, recklessness, and terror of children at holiday time.
Merry Christmas to all, and love to all,
--Mike, Margaret, and Grace
posted by Mike Ciacciarelli
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