I do not know why I am starting this blog other than I am sick and tired of being fat, tired and feeling like I am 20 years old than I am. Perhaps this is a way of motivating myself - that is, by chronicling my efforts to get healthy I can also help other parents and siblings who feel like I have for the last 13 years.
It was a little over 13 years ago when my beloved Brendan was first diagnosed with Leukemia for the first time. He was three years old. Being born with Downs Syndrome, he presented us with new and unexpected challenges my two other children, Mollie and Joseph, certaintly had not. But we were working through them pretty well. And a day with a child with Downs -- any day -- is almost guaranteed to be a day of much laughter and a deepened sense of life.
It was a brutal battle. It lasted almost three years and there were many times we almost lost him to infection and a host other side effects from the chemotherapy. But we made it. And the next five years were happy and quite healthy ones.
But then the Leukemia returned. Brendan had relapsed and the fight to beat it again would be even harder than the first. He was the most extraordinary and brave boy. Brendan never complained, he fought with a tenacity that would leave a Navy SEAL feel weak and wimpy (actually, knowing a number of current and former SEALs, they told us this numerous times!). Two and half years later, after numerous additional brushes with death - a more than a few miracles - Brendan beat it again.
Two years passed... and the Leukemia was back again. This time, the doctors determined he needed a bone marrow transplant. This was a surreal experience, trying to figure out where to go and what do to do. He seemed so healthy - no outward signs of illness, he was laughing and playing but, again, absolutely determined to beat the Leukemia yet again.
We chose Boston Children's Hospital for the bone marrow transplant. And without going into the numerous near death expereiences and crisis' in horrid detail, it worked. And he had beaten the Leukemia a third and final time.
A year and half after this, he went into Children's Hospital in Washington DC for a relatively minor procedure. Unlike the previous breaks between Leukemia where his health was good to very good, this time Brendan suffered from a host of non-cancerous side effects. One was the build-up of fluid in his entire body. Anyway, the procedure worked but his body did not. It was beaten up, battered, shattered and gone. A relatively minor infection took him in the end. He fought the greatest fight I have ever seen anyone fight. In all of history. And he made sure none of it was in vain or without meaning as he offered up each and every one of his sufferings as a form of prayer for various intentions - family, friends, doctors and nurses, strangers who would beg that he pray for them. He did this all three times he was ill. And in so doing, he changed the world, he changed the lives of literally countless people around the world, he forever changed my life and the lives of my other children and my wife. Not bad for a close-to-16 year old boy with Downs Syndrome. He had more than 1,300 people at his wake and more than that at his funeral. It is a legacy I can never live up to. But I have to - I want to- try.
So here I am today. I am 6'3" and 301 pounds. I do not sleep well, I do not eat well, I do not drink well, I do not exercise well. But - in the name of Brendan - I am going to try and change all that starting today.
If you find this blog and read it, please help me. Encourage me and most of all, pray for me. It is my intention to perhaps build out what I build here into something that can help other parents who, like me, have spent years in hospitals and clinics, mentally and phsyically exhausted, depressed and - as one doctor so perfectly described it - surviving rather than living.
I am done with surviving and am ready to live. For Maura, Mollie, Joseph. For my many nephews and nieces (and now grand nieces!). For my friends and for everyone who prayed for Brendan and us - and me, as the father and head of the family - all these years. I want to do this for you. And I want to do this for me. So, here's to life - may we all live it to the best and fullest of our abilities. But first, here is to getting in shape so I can do that!!
It was a little over 13 years ago when my beloved Brendan was first diagnosed with Leukemia for the first time. He was three years old. Being born with Downs Syndrome, he presented us with new and unexpected challenges my two other children, Mollie and Joseph, certaintly had not. But we were working through them pretty well. And a day with a child with Downs -- any day -- is almost guaranteed to be a day of much laughter and a deepened sense of life.
It was a brutal battle. It lasted almost three years and there were many times we almost lost him to infection and a host other side effects from the chemotherapy. But we made it. And the next five years were happy and quite healthy ones.
But then the Leukemia returned. Brendan had relapsed and the fight to beat it again would be even harder than the first. He was the most extraordinary and brave boy. Brendan never complained, he fought with a tenacity that would leave a Navy SEAL feel weak and wimpy (actually, knowing a number of current and former SEALs, they told us this numerous times!). Two and half years later, after numerous additional brushes with death - a more than a few miracles - Brendan beat it again.
Two years passed... and the Leukemia was back again. This time, the doctors determined he needed a bone marrow transplant. This was a surreal experience, trying to figure out where to go and what do to do. He seemed so healthy - no outward signs of illness, he was laughing and playing but, again, absolutely determined to beat the Leukemia yet again.
We chose Boston Children's Hospital for the bone marrow transplant. And without going into the numerous near death expereiences and crisis' in horrid detail, it worked. And he had beaten the Leukemia a third and final time.
A year and half after this, he went into Children's Hospital in Washington DC for a relatively minor procedure. Unlike the previous breaks between Leukemia where his health was good to very good, this time Brendan suffered from a host of non-cancerous side effects. One was the build-up of fluid in his entire body. Anyway, the procedure worked but his body did not. It was beaten up, battered, shattered and gone. A relatively minor infection took him in the end. He fought the greatest fight I have ever seen anyone fight. In all of history. And he made sure none of it was in vain or without meaning as he offered up each and every one of his sufferings as a form of prayer for various intentions - family, friends, doctors and nurses, strangers who would beg that he pray for them. He did this all three times he was ill. And in so doing, he changed the world, he changed the lives of literally countless people around the world, he forever changed my life and the lives of my other children and my wife. Not bad for a close-to-16 year old boy with Downs Syndrome. He had more than 1,300 people at his wake and more than that at his funeral. It is a legacy I can never live up to. But I have to - I want to- try.
So here I am today. I am 6'3" and 301 pounds. I do not sleep well, I do not eat well, I do not drink well, I do not exercise well. But - in the name of Brendan - I am going to try and change all that starting today.
If you find this blog and read it, please help me. Encourage me and most of all, pray for me. It is my intention to perhaps build out what I build here into something that can help other parents who, like me, have spent years in hospitals and clinics, mentally and phsyically exhausted, depressed and - as one doctor so perfectly described it - surviving rather than living.
I am done with surviving and am ready to live. For Maura, Mollie, Joseph. For my many nephews and nieces (and now grand nieces!). For my friends and for everyone who prayed for Brendan and us - and me, as the father and head of the family - all these years. I want to do this for you. And I want to do this for me. So, here's to life - may we all live it to the best and fullest of our abilities. But first, here is to getting in shape so I can do that!!
