I was supposed to speak to my coworkers today about our experience with United Way organizations through our life with Bo. Instead, I wrote a letter, as Bo was still in-patient. Thankfully he IS being discharged today. And if his morning labs look good, we will proceed to Boston as a family.
My United Way Letter:
Dear Mary,
Thanks for keeping up with us. Bo seems to be doing better today. It’s hard to say. Also, thanks for doing the presentation in my stead. I guess it was my optimism and exuberance that had me convinced that we’d be home sooner. This is a late night missive, and so I hope it isn’t too rhetorical.
Dear PCS Family,
I was deeply honored to be asked to speak to you about my experience with Bo, and am sorely disappointed to be sharing this with you in a letter, from my son’s hospital room. Thank you for your good thoughts and wishes. Bo seems to have stabilized, but because he is a medical anomaly, we can only hope and guess how this will play out.
I’m glad we decided to listen to his doctors and bring him up to Grand Rapids. I only did it to show them that being at Bronson would have been the same thing. I was wrong. Right decision, wrong reason.
On the one hand, we realize that each day we have with Bo is a gift. On the other hand, living on the edge of life and death can be terrifying. But none of this would be possible without something as simple as the person who gives blood at their local Red Cross Drive. Because even though Bo’s condition is rare and requires all sorts of specialists, if it were not for the 5 blood transfusions he received in the first few months of his life, we wouldn’t even have the privilege of sleeping on hospital cots, thumbing our noses at the specialist group in Ann Arbor, and finding ways to keep Bo healthy and thriving.
As many of you know, Bo was born with a rare condition that precludes him from absorbing the necessary fluids and nutrients to survive on his own. According to the literature, he was not supposed to survive his 9 month birthday. He turned 15 months old this week. To my knowledge, there are less than 6 living kids in the US with this condition. In a typical intestine, it is lined with something like a shag carpet. All those fibers provide lots of surface area to absorb. Someone with Bo’s condition has a gut lined with something more like linoleum; those fibers are in the wrong place. So he receives artificial nutrition intravenously. This can be tricky, as the body has a harder time regulating itself. And last week, he was hospitalized with a critically low potassium level (too low or too high can cause the heart to stop, not good). They have been playing around with his fluids to stabilize this.
Which brings me back to the Red Cross. I believe that the arrogance of immortality is a protective shield we need in youth, and times of plenty, so that we may turn our attention to living, more than just surviving. To creating and innovating, to giving and rejoicing, to dreaming and reveling in the abundance of life. And sometimes that exuberance, ignorance or arrogance can allow us to take the right path for perhaps the wrong reason. So maybe you just want the cookie, or a few more minutes to stretch your legs. Maybe it’s something you do automatically without thinking. Maybe it’s the chance to lay down for a minute at work. Maybe there are lots of wrong reasons to give blood. But it will always be the right decision.
Maybe you will decide to give blood to support Bo. Maybe I originally gave to the United Way campaign to get a few more days off. But maybe now it’s more than money we’re talking about. Maybe I am, finally, as a recipient of these services, so lovingly given, feeling the enormity of what it means to be a part of the human family. That we are responsible for the least among us. That we can bring both bread and roses to the table. That we need to feed both the body and the heart. That what we give to our community, in time, blood, or dollars, brings this grace, these roses back to our own table through the act of loving the least of us, like Bo. Although few things in life are certain, the odds are that most of us will live long enough to have to either endure ourselves or support a loved one through strife, tragedy and eventually death. And it is the compassion and the friendship from our community that nourishes our starving bodies and hearts, and gives us the power to stay strong for those who need us most. It is in receiving that we embolden our own giving. While our experience with Bo hasn’t required a huge number of United Way services, the few organizations we have benefited from have literally saved his life: the Red Cross and DeVos Children’s Hospital. I intend to support these organizations long after my Bo is gone. There will be more babies who will need transfusions and a good hospital to help them survive, so one day, they too can celebrate the abundance of life, and live exuberantly. With both bread and roses.
Whatever the reason, make the right choice.
Love,
Kinn
Thanks for keeping up with us. Bo seems to be doing better today. It’s hard to say. Also, thanks for doing the presentation in my stead. I guess it was my optimism and exuberance that had me convinced that we’d be home sooner. This is a late night missive, and so I hope it isn’t too rhetorical.
Dear PCS Family,
I was deeply honored to be asked to speak to you about my experience with Bo, and am sorely disappointed to be sharing this with you in a letter, from my son’s hospital room. Thank you for your good thoughts and wishes. Bo seems to have stabilized, but because he is a medical anomaly, we can only hope and guess how this will play out.
I’m glad we decided to listen to his doctors and bring him up to Grand Rapids. I only did it to show them that being at Bronson would have been the same thing. I was wrong. Right decision, wrong reason.
On the one hand, we realize that each day we have with Bo is a gift. On the other hand, living on the edge of life and death can be terrifying. But none of this would be possible without something as simple as the person who gives blood at their local Red Cross Drive. Because even though Bo’s condition is rare and requires all sorts of specialists, if it were not for the 5 blood transfusions he received in the first few months of his life, we wouldn’t even have the privilege of sleeping on hospital cots, thumbing our noses at the specialist group in Ann Arbor, and finding ways to keep Bo healthy and thriving.
As many of you know, Bo was born with a rare condition that precludes him from absorbing the necessary fluids and nutrients to survive on his own. According to the literature, he was not supposed to survive his 9 month birthday. He turned 15 months old this week. To my knowledge, there are less than 6 living kids in the US with this condition. In a typical intestine, it is lined with something like a shag carpet. All those fibers provide lots of surface area to absorb. Someone with Bo’s condition has a gut lined with something more like linoleum; those fibers are in the wrong place. So he receives artificial nutrition intravenously. This can be tricky, as the body has a harder time regulating itself. And last week, he was hospitalized with a critically low potassium level (too low or too high can cause the heart to stop, not good). They have been playing around with his fluids to stabilize this.
Which brings me back to the Red Cross. I believe that the arrogance of immortality is a protective shield we need in youth, and times of plenty, so that we may turn our attention to living, more than just surviving. To creating and innovating, to giving and rejoicing, to dreaming and reveling in the abundance of life. And sometimes that exuberance, ignorance or arrogance can allow us to take the right path for perhaps the wrong reason. So maybe you just want the cookie, or a few more minutes to stretch your legs. Maybe it’s something you do automatically without thinking. Maybe it’s the chance to lay down for a minute at work. Maybe there are lots of wrong reasons to give blood. But it will always be the right decision.
Maybe you will decide to give blood to support Bo. Maybe I originally gave to the United Way campaign to get a few more days off. But maybe now it’s more than money we’re talking about. Maybe I am, finally, as a recipient of these services, so lovingly given, feeling the enormity of what it means to be a part of the human family. That we are responsible for the least among us. That we can bring both bread and roses to the table. That we need to feed both the body and the heart. That what we give to our community, in time, blood, or dollars, brings this grace, these roses back to our own table through the act of loving the least of us, like Bo. Although few things in life are certain, the odds are that most of us will live long enough to have to either endure ourselves or support a loved one through strife, tragedy and eventually death. And it is the compassion and the friendship from our community that nourishes our starving bodies and hearts, and gives us the power to stay strong for those who need us most. It is in receiving that we embolden our own giving. While our experience with Bo hasn’t required a huge number of United Way services, the few organizations we have benefited from have literally saved his life: the Red Cross and DeVos Children’s Hospital. I intend to support these organizations long after my Bo is gone. There will be more babies who will need transfusions and a good hospital to help them survive, so one day, they too can celebrate the abundance of life, and live exuberantly. With both bread and roses.
Whatever the reason, make the right choice.
Love,
Kinn
