Why Not Us?
It's hard to know how many people are still checking in on us these days, but the smattering of encouraging notes on our guest book tells us that some of you have been very patient with us and and are due for some news so here it goes:
There isn't a day that goes by that we aren't brought to an emotional standstill as we feel the full impact of the loss of our son. Some days this is felt like an impending storm, clouds swirling and no sun. Others it is a brief but powerful rain shower in an otherwise bright day. What brings these moments on is hard to explain. Sometimes it is just the emptiness itself, the void that remains because part of us is gone forever. Other times it is a thought, an idea, of the future that previously would have included him, but now in that moment only includes the notion of him not being there. In fact, this (second, unintended) future is the hardest part to bear of all because, well, we live for our kids. We are secondary to them. Our future, and every facet of the future was being driven by the very presence of our children, one of them very sick, and every idea for what comes next is an idea that, however interesting or exciting is also one that can only be achieved because of what is NOT there. Since Max died there hasn't been one thing that we have done that was like what we did before. His presence was that focal to our lives. His needs were great and he was the axis around which the rest of our lives spun. Without him, we have been doing our best not to spin out of control.
Our last month and a half has included lots of busy work - better to keep the mind active so as not to get pulled by the undertow of grief. I've returned to a very busy schedule at work. Margaret has been on a home improvement binge, organizing and cleaning and trying to catch up on all of Max's medical and insurance concerns (a task no grieving mother should have to do). Though it comes at the same time every year, our anniversary seemed to arrive this year in a most suspicious manner. It felt like a challenge, like it was daring us to do something good for each other when neither of us felt like it. But we did manage to have a nice day and we were able to realize that 8 years of marriage is an achievement for any couple, but for all that we have been through we have a lot to be proud of. Having read so many accounts of the difficulty this sort of emotional trauma can cause in a marriage we feel fortunate to be able to lean on each other, and to balance each other out as needed.
Finally this brings us to Grace, now four years old and wise beyond her years. It is in her that we find our greatest joy and our most searing pain. She carries in her small heart such enormous love. She talks about her brother constantly, often to strangers and speaks truthfully and matter-of-factly. When her schoolmate introduced Grace to her younger baby brother, Grace told her, "I have a baby brother who is 1 named Max who died!" With us, the comments range from the nostalgic "Remember when Bubba used to drop all his spoons off his high chair?" to the brutal - "I don't want to wear my 'Supergirl' tee shirt today, Mommy. I'm not a super hero, I didn't save anyone. I didn't save Max." But by talking about him so much she is bringing his wonderful light and smile out again. Driving home the other night she first was upset because Max's star stopped "following" our van. But then she thought about it and guessed that Max probably knew a shortcut. She was so excited to see his star when we came home. Her joy for her brother is the definition of bittersweet. We celebrate the amusement of these moments, but we are crushed by the reality that had he lived, what a wonderful team they would have become.
Which brings us back to his loss, and what to make of it. When we were watching him deteriorate every day, when we saw all the equipment come in and out of his room every day we had to be so narrowly focused on his progress that we had very little time to place his situation in the context of his disease or in his process. But since we've left Minnesota, of the children who we've been following closely, we have seen much more suffering than success. The lesson we learned the hardest is that life is not fair. And for so many families of terminally ill children, that lesson is learned over and over again. There are just so many sick children. We have come to realize that the question is not "why us?" but rather "why not us?" as such tragedy can happen to anyone.
In addition to all of the amazing Hurler families that we have on our site, we would like to turn our readership to the following families, all of whose hospital stay were concurrent with or overlapped Max's:
Saralee - (AML) - what a fighter, over 60 days on a vent http://www.caringbridge.org/mn/saralee/
Marshall (Fanconi Anemia) - one of two children in the same family with Fanconi who we met at RMH http://www.caringbridge.org/la/marshall_n_amelia/
Dylan (JMML, passed away February 11) http://www.caringbridge.org/mi/dylan/
Tom (Fanconi Anemia, passed away February 17) http://www.caringbridge.org/ri/tom/
Cade (Fanconi Anemia, passed away February 18) http://www.caringbridge.org/nc/cadesmith/
In addition, we would like to invite as many of Max's followers to Christopher Joseph's site, he is a boy with Hurler just like Max and he is in the thick of the tough days of transplant at Johns Hopkins: http://christopherjoseph.com/
A boy who lives not too far from us has a rare disease called adrenoleukodystrophy (ALD) and his progress is being recorded at: http://www.hultmanhome.net/
We would like to extend our most sincere thank you to everyone from Fairview University Hospital and the Ronald McDonald House of the Twin Cities who reached out to us with notes about our son. Our time there will be remembered for so much more than our greatest tragedy, it will also be remembered for so much goodness, personified by so many of the staff of the hospital and the RMH.
Finally we would like to direct you to check out the updates for Max's little buddy Susannah White. Her Mom, Amy helped us through many long nights at the hospital with supportive phone calls and Yahoo instant messages. She has written a beautiful tribute to Max on her site and we hope that all who came to know our son take the time to read it. Thank you Amy for being such a good friend and a champion for our son.
Until next month ...
Mike, Margaret, and Grace
There isn't a day that goes by that we aren't brought to an emotional standstill as we feel the full impact of the loss of our son. Some days this is felt like an impending storm, clouds swirling and no sun. Others it is a brief but powerful rain shower in an otherwise bright day. What brings these moments on is hard to explain. Sometimes it is just the emptiness itself, the void that remains because part of us is gone forever. Other times it is a thought, an idea, of the future that previously would have included him, but now in that moment only includes the notion of him not being there. In fact, this (second, unintended) future is the hardest part to bear of all because, well, we live for our kids. We are secondary to them. Our future, and every facet of the future was being driven by the very presence of our children, one of them very sick, and every idea for what comes next is an idea that, however interesting or exciting is also one that can only be achieved because of what is NOT there. Since Max died there hasn't been one thing that we have done that was like what we did before. His presence was that focal to our lives. His needs were great and he was the axis around which the rest of our lives spun. Without him, we have been doing our best not to spin out of control.
Our last month and a half has included lots of busy work - better to keep the mind active so as not to get pulled by the undertow of grief. I've returned to a very busy schedule at work. Margaret has been on a home improvement binge, organizing and cleaning and trying to catch up on all of Max's medical and insurance concerns (a task no grieving mother should have to do). Though it comes at the same time every year, our anniversary seemed to arrive this year in a most suspicious manner. It felt like a challenge, like it was daring us to do something good for each other when neither of us felt like it. But we did manage to have a nice day and we were able to realize that 8 years of marriage is an achievement for any couple, but for all that we have been through we have a lot to be proud of. Having read so many accounts of the difficulty this sort of emotional trauma can cause in a marriage we feel fortunate to be able to lean on each other, and to balance each other out as needed.
Finally this brings us to Grace, now four years old and wise beyond her years. It is in her that we find our greatest joy and our most searing pain. She carries in her small heart such enormous love. She talks about her brother constantly, often to strangers and speaks truthfully and matter-of-factly. When her schoolmate introduced Grace to her younger baby brother, Grace told her, "I have a baby brother who is 1 named Max who died!" With us, the comments range from the nostalgic "Remember when Bubba used to drop all his spoons off his high chair?" to the brutal - "I don't want to wear my 'Supergirl' tee shirt today, Mommy. I'm not a super hero, I didn't save anyone. I didn't save Max." But by talking about him so much she is bringing his wonderful light and smile out again. Driving home the other night she first was upset because Max's star stopped "following" our van. But then she thought about it and guessed that Max probably knew a shortcut. She was so excited to see his star when we came home. Her joy for her brother is the definition of bittersweet. We celebrate the amusement of these moments, but we are crushed by the reality that had he lived, what a wonderful team they would have become.
Which brings us back to his loss, and what to make of it. When we were watching him deteriorate every day, when we saw all the equipment come in and out of his room every day we had to be so narrowly focused on his progress that we had very little time to place his situation in the context of his disease or in his process. But since we've left Minnesota, of the children who we've been following closely, we have seen much more suffering than success. The lesson we learned the hardest is that life is not fair. And for so many families of terminally ill children, that lesson is learned over and over again. There are just so many sick children. We have come to realize that the question is not "why us?" but rather "why not us?" as such tragedy can happen to anyone.
In addition to all of the amazing Hurler families that we have on our site, we would like to turn our readership to the following families, all of whose hospital stay were concurrent with or overlapped Max's:
Saralee - (AML) - what a fighter, over 60 days on a vent http://www.caringbridge.org/mn/saralee/
Marshall (Fanconi Anemia) - one of two children in the same family with Fanconi who we met at RMH http://www.caringbridge.org/la/marshall_n_amelia/
Dylan (JMML, passed away February 11) http://www.caringbridge.org/mi/dylan/
Tom (Fanconi Anemia, passed away February 17) http://www.caringbridge.org/ri/tom/
Cade (Fanconi Anemia, passed away February 18) http://www.caringbridge.org/nc/cadesmith/
In addition, we would like to invite as many of Max's followers to Christopher Joseph's site, he is a boy with Hurler just like Max and he is in the thick of the tough days of transplant at Johns Hopkins: http://christopherjoseph.com/
A boy who lives not too far from us has a rare disease called adrenoleukodystrophy (ALD) and his progress is being recorded at: http://www.hultmanhome.net/
We would like to extend our most sincere thank you to everyone from Fairview University Hospital and the Ronald McDonald House of the Twin Cities who reached out to us with notes about our son. Our time there will be remembered for so much more than our greatest tragedy, it will also be remembered for so much goodness, personified by so many of the staff of the hospital and the RMH.
Finally we would like to direct you to check out the updates for Max's little buddy Susannah White. Her Mom, Amy helped us through many long nights at the hospital with supportive phone calls and Yahoo instant messages. She has written a beautiful tribute to Max on her site and we hope that all who came to know our son take the time to read it. Thank you Amy for being such a good friend and a champion for our son.
Until next month ...
Mike, Margaret, and Grace
posted by Mike Ciacciarelli
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