Site moved to www.ThenCameMichael.com
It's been about a year since we left Chicago, and despite the enormous hurdles of finding and trusting health care in a different location, we accomplished quite a bit. We finally proved his mitchondrial DNA damage. He is taking his L-glutathione IVs fairly regularly. We constantly work on his nutrition. We live a beautiful life despite the medical baggage. In the morning, we wake up to hot air balloons rising outside our window and Michael gets to be there as Aedan goes off to preschool for the first time.
Last night, though, shook me out of any piece of mind I thought we built for ourselves.
It started like any other night. Aedan's bedtime meant that he, Dada, and I go to his room and lie with him for a while (read him a book, cuddle, sing him a song). He loves it when Michael sings to him. Lately, his favorite song is a sweet ballad by Pearl Jam titled "Just Breathe"
"Yes I understand that every life must end, aw huh,..
As we sit alone, I know someday we must go, aw huh,..
I’m a lucky man to count on both hands
The ones I love,..
Some folks just have one,
Others they got none, aw huh,..
Stay with me,..
Let’s just breathe."
As Aedan drifted off to sleep Michael finished with the words,
"Nothing you would take,..
everything you gave.
Hold you till I die,..
Meet you on the other side."
These last words will forever haunt us now, for little did I know, but halfway through that song Michael started having intense pain in his left arm followed by a clenching pain in his chest. Last night, while singing his little boy to bed, Michael started having a heart attack.
But this is the thing about Michael- he is so determined to live through those few sweet moments of life that he gets, he just kept singing. He sang to that last line- until he knew his son was sound asleep- before he crawled out of his bed and stumbled down the hallway.
When I found him, his heart rate was elevated to the point of an Olympic sprinter yet he said he was freezing. He put on two sweatshirts and quickly took aspirin. The thing that really got me scared though, was that HE suggested that I might have to call for an ambulance. For a person with normal medical needs this would be a no-brainer. But that's where it got complicated.
I remember a time when going to an emergency room was like date night. We would go to the best hospitals in Chicago, and yet, it always seemed like Michael knew more about the medicine of his own body than the attending physicians. The waxing and waning nature of mitochondrial damage would completely confuse doctors who needed concrete results. The fact that Michael, having dealt with this for so long, could actually talk and understand doctors using technical terms tested their own knowledge and conceit. There were many instances when he even had to explain that his medicine, L-glutathione, was a tripeptide, a chain of amino acids, and not some crazy drug with adverse side effects. Because of being failed so many times, we learned how to survive a hospital visit and not to just go and trust you will be seen and helped.
This was why we didn't rush to call an ambulance right away.
We started weighing options instead. How could Michael explain what was happening with his heart along with the rest of his 3 yrs of rare medical conditions to a completely new doctor? Can we trust that someone good will be working Saturday night on Labor Day weekend? How can we be sure nothing that they do for his heart attack won't aggravate his other symptoms? Soon the super intense pains started to go down- thank God for aspirin- leaving Michael with a different and scary, yet manageable, new sensation.
Lucky for him, this event stabilized enough to get him through the night. I would wake up just make sure he was still breathing. The next morning he checked himself into the ER where they ran blood labs and confirmed what he knew all along.
It is frightening to think you are on an uphill climb and then suddenly get hit with something so fatal that even if you do recover from the event you will still be set back years of struggle.
It is a wake up call for us to stay diligent about every life choice Michael has to make now.
It is a testament to what makes up a man who despite mind-altering pain, will choose instead to lay there with his son and just keep singing until he knows his son is peacefully asleep.
Sunday, September 4, 2011
Tuesday, July 26, 2011
the strength of a father in a time of crisis- by Nicole
Site moved to www.ThenCameMichael.com
When I first became pregnant with our son, I'm pretty sure Michael blew a head gasket. Not for reasons like, he didn't feel stable enough or that he didn't think that I was the one with whom he'd love to have a family. But because of deep-rooted emotions, he was certain that he simply did not know how to be a good father. And yet, he refused to fail his son. I remember him going out of his way to keep me comfortable and at the same time being completely awkward when it came to Aedan. Every time his little baby cried in his arms or preferred me over him, I saw a look that I had never seen before in Michael. For a man that always succeeded, this devastated him and brought back all the painful memories that shook him to the core. In a very humbling way, I saw his weakness, open wounds, and fear.
Sixteen months into his son's life- just as Aedan began really walking and interacting- Michael was given his first dose of Levaquin coupled with a steroid pack. A routine sleep apnea surgery followed soon after and then the prescription for Avelox. October 6, 2008 is the day none of us will forget. On that day, he started feeling numbness and tingling in his legs. For a new father who was finally feeling more at ease, this ripped the ground right out from underneath him.
Still, I have never seen a man so determined to raise his son with such joy, peace and safety. Aedan never came with us to the emergency rooms. He didn't see the tears or feel the full impact of the stress. In those darkest moments when all Michael could do was sit in an armchair barely able to speak or move his arms, Michael went so far as to "hide out" in the back room because he was so adamant about not having Aedan see his daddy like that.
It was like a scene out of the movie "Life Is Beautiful". Out of all the darkness that was around us, we surrounded that boy with a stable, loving, and playful house. Now 4yrs old, Aedan remembers the wheelchair. We would give him rides around the house on daddy's lap. He knows about medicines and how daddy needs to rest sometimes. More importantly, he knows daddy has the best tickles, always knows the coolest music, and is brave and strong.
Michael always says he is giving his son front row seats to watch a good man live his life.
When it comes to being a father, I am proud to know that Aedan learns about bravery and strength and perseverance from this man who transcends suffering to live for something that pain cannot touch or take away- the loving eyes of his son
When I first became pregnant with our son, I'm pretty sure Michael blew a head gasket. Not for reasons like, he didn't feel stable enough or that he didn't think that I was the one with whom he'd love to have a family. But because of deep-rooted emotions, he was certain that he simply did not know how to be a good father. And yet, he refused to fail his son. I remember him going out of his way to keep me comfortable and at the same time being completely awkward when it came to Aedan. Every time his little baby cried in his arms or preferred me over him, I saw a look that I had never seen before in Michael. For a man that always succeeded, this devastated him and brought back all the painful memories that shook him to the core. In a very humbling way, I saw his weakness, open wounds, and fear.Sixteen months into his son's life- just as Aedan began really walking and interacting- Michael was given his first dose of Levaquin coupled with a steroid pack. A routine sleep apnea surgery followed soon after and then the prescription for Avelox. October 6, 2008 is the day none of us will forget. On that day, he started feeling numbness and tingling in his legs. For a new father who was finally feeling more at ease, this ripped the ground right out from underneath him.
Still, I have never seen a man so determined to raise his son with such joy, peace and safety. Aedan never came with us to the emergency rooms. He didn't see the tears or feel the full impact of the stress. In those darkest moments when all Michael could do was sit in an armchair barely able to speak or move his arms, Michael went so far as to "hide out" in the back room because he was so adamant about not having Aedan see his daddy like that. It was like a scene out of the movie "Life Is Beautiful". Out of all the darkness that was around us, we surrounded that boy with a stable, loving, and playful house. Now 4yrs old, Aedan remembers the wheelchair. We would give him rides around the house on daddy's lap. He knows about medicines and how daddy needs to rest sometimes. More importantly, he knows daddy has the best tickles, always knows the coolest music, and is brave and strong.
Michael always says he is giving his son front row seats to watch a good man live his life.
When it comes to being a father, I am proud to know that Aedan learns about bravery and strength and perseverance from this man who transcends suffering to live for something that pain cannot touch or take away- the loving eyes of his son
Sunday, July 24, 2011
reflections from the darkness
Site moved to www.ThenCameMichael.com
I am not Michael. I am not strong enough to be Michael. However, growing up in a family of 5 kids you learn to be loud...and observant. So I will be his voice when he is too weak to speak...or write. They say when you have found your soulmate you are of one mind. So I will let him talk through me.
My name is Nicole Frantilla. I have been with Michael for over 10 years. We have a beautiful 4yr old son and a 65lb yellow Labrador lap dog.
And Michael... Michael suffers almost every adverse reaction from Levaquin and Avelox (toxic antibiotics given to him for a cough) listed on the black box warning. This has been going on for almost 3 years now. As far as we know, there is no recovery.
But Michael... Michael proves everyday how much suffering a body can take and yet his spirit makes him an unstoppable force of nature.
He is my inspiration and the reason why on the 1000th day from the start of this poisoning we promised each other to reach out to others and tell our story. After years of doctors, emergency rooms, pills, and cross-country trips we are able to speak out of hindsight about a story of courage, hypocrisy, tenacity, and pain.
This is a story I hope our son reads when he is older and is finally able to understand why daddy couldn't play or be with him all those times. But that when he did, it lifted his soul so much he fought even harder and loved even deeper.
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