Thursday, November 24, 2011

Giving Thanks




As the father of a normal, healthy four year old, I often watch animated movies. Very often. The same ones over and over again. In my search for meaning, I pay attention to every detail. After the 700th viewing of Madagascar, I found myself reading the credits as I had already memorized every word of the script and all of the intricate movements of the characters.

Of course, the credits list the voice actors and the animators and writers. After those folks, I figured there would be a few production assistants and interns. After all, it's a cartoon. How many people can it take to make it?

Hundreds. People doing things you never imagined as necessary. People doing things you never even knew existed. Yet without all of these people, there would be no Alex, Marty, Gloria and Melman (lion, zebra, hippo and giraffe for those without youngsters). There wouldn't be a video to occupy a little boy's time between medical procedures, between seizures.

The same is true for the production staff behind the Wonderful World of Spike. I'm not a social creature so my acquaintance circles tend to be fairly small but long lived. Therefore, I was surprised by just how many people stepped forward at just the right time with just the right actions, words, advice and skills when Spike became ill. I do not know how to adequately express my gratitude to everyone. All I can say is this has been the best Thanksgiving I have ever had and I am thankful for all of the people who made it possible.

At one point, I hesitated to list those deserving special thanks because I feared I would inadvertently leave someone off the list. I then realized that a careless omission probably wouldn't bother any of those who gave so freely.

So here's the short and undoubtedly incomplete list of people I wish to thank this year. In most cases, I have used first names only, both out of respect for privacy and because I don't even know some of the last names! I have included full names for certain medical professionals so that others who need help can contact them. Of course, you can always contact me for help too.

Noemi and Jaci, who custom sewed pajamas for Spike so that he could more comfortably change with all those tubes, lines and wires attached.

Ron, who followed Spike's saga every day and gave us hope with the incredible success story of his son's battle with epilepsy.

Dave, who built Spike a safe play table and who I knew was always nearby should I need anything at all.

Wilbert, who provided incredible professional flexibility at a critical time

Yelena, Alex and Tom, who have provided stability for me through the years even as I did my best to generate chaos. Knowing that they will be around and ready to team up again when this is all over gives me something to look forward to.

All of the Trailer Sailors, an online family who mutually support one another through all phases of life.

Timm, dive buddy, sailing mate and all around adventure partner who took a week off work, drove down from Wisconsin even as his Packers were playing in the Super Bowl and showed up, after being told not to, and taught me the value of having help nearby even when you think you don't need it.

Uncle Mark, who left his work and his own young kids to come out and help all of us.

Uncle John, who showed up unannounced at Duke to do whatever was necessary and then returned a second time, again taking time away from work and his family, to help. Along with Timm, he provided very useful entertainment with his skills as a seamstress.

Aunt Chris and Aunt Jenny, who took care of their families on their own so that the uncles could take care of Spike.

Aunt Ann, winner of the Favorite Uncle Award, who took time away from her job and came down to help care for Spike so that I could return to work.

Aunt Jane and Uncle Steve, who supplied critical off the record information.

Grandma and Grandpa, who not only flew across the country three times to help but also gave Spike something to look forward to when he was at his sickest.

Cousin Lisa, who thought constantly about Spike and sent me a touching e-mail at just the right time.

Lumberjacks, my high school classmates, who followed Spike's progress and sent an encouraging stream of e-mails throughout. Thirty years apart made no difference to this crowd.

Lori, Brandy, Anne, Larry and Rodney, my running team at Genworth, who gave me something else to think about and kept me from returning to my natural couch potato state of being.

Ed, who offered prayers and perspective that helped more than he realizes.

Genworth Risk Management, the greatest staff in the world. Too many to list but they all helped me through this by covering for me when I was out, offering prayers and success stories, sending e-mails that always lifted my spirits and by just being there in the background, forty five people I knew I could count on no matter what. This is the team that gave Spike his iPad, which helped carry him through so many tough days. You will never know how much you helped in so many ways. I miss all you guys.

Jim and Jocelyn, friends first, then colleagues, who started every conversation with a question about Spike's health and well-being.

Mark, who not only pulled the right benevolent strings to get Spike the care he needed but also came with his wife to see us at a most terrible time to share with us the success story of his own child.

Robb, who knows exactly which strings to pull to make the world a better place.

Leslie, Tim, Matt, Jeff, George and Anne who shared vital information about the medical adventures of their children. That information ultimately shortened Spike's illness by giving me direction in my search for solutions.

Leslie, again, for visiting us in the hospital and checking in throughout the year with offers of help and important information. May you find the solution you need and deserve for your family.

Judy, my lifelong friend, who, along with her amazing daughter Bethany, demonstrated that a family can bear the unbearable and move forward. Thanks also to the prayer circle she organized.

The hundreds of readers of this post from ten countries who have viewed my ramblings over 9,000 times. You give me a vital outlet that keeps me from internalizing all of this. I always feel better once I have updated the blog - almost as if I can let go a little bit. Your e-mails and comments have been great too.

Rachel, who kept me going with endless chat sessions through those long nights at Spike's bedside.

Jack and Caitlin, ICU nurses at Duke and the Cleveland Clinic, who helped Spike (and Dad) get through that first tough night after surgery.

Barry, a friend of a friend who just happens to be a respected expert in epilepsy, who took a lot of time out from his Sunday afternoon back when this whole misadventure began to give me the real scoop on what I could expect as Spike's epilepsy developed. All of the other medical professionals at that point were overly optimistic and reassuring. Barry gave it to me straight and that really helped prepare me for the progression of Spike's illness.

Candy, who arranged Spike's ketogenic diet that kept him seizure free for five months and who also took a special interest in his care and success.

Meredith, the most compassionate nurse I have ever met, for getting Spike and me through a very tough night and always checking up on all of us whether Spike was her patient or not.

Verry, Zach, Wayne and Regina, nurses at Duke, who went the extra mile to care for Spike and his family.

Molly, an absolutely incredible nurse practitioner at the Cleveland Clinic who could (and does) teach doctors, nurses and families how to get things done and move forward.

Security guard at Cleveland Clinic, name unknown to me, who always greeted me with a smile and questions about Spike. I used to lose my access badge just so I could go down and talk to her for a few minutes.

Maintenance engineer at Duke, name unknown to me, who sat down with me for a long talk one night at Duke and then always found a reason to stop by Spike's room and change light bulbs that seemed just fine to everyone else.

Transport orderly at Cleveland Clinic, name unknown to me, who shared his experience with his two autistic children and how to deal with hyperactivity.

Musical therapist at Cleveland Clinic, who occupied a very hyperactive Spike while we waited for his first surgery in Cleveland.

Ladies In Black, the occupational and physical therapists at Cleveland, who drove away Spike's lethargy by simply walking into his room.

Researchers, unknown to me, who spent countless hours developing the tools and techniques that gave Spike his life back.

CIGNA, Spike's medical insurer, who paid for some edgy diagnostic tests in addition to all of his other expenses. Their customer representatives were always prompt, knowledgeable and helpful.

Neighbors, who took care of the house, and always stood by if needed for anything at all.

Deborah, who's tales of sailing the South Seas reminded me that there is life waiting outside the hospital walls.

Emily, who put her brother first and never complained about the lack of attention at a pivotal point in her life.

Dr. Daniel Ostrovsky, a hospitalist at Duke, who patiently explained to me how doctors cannot be drawn into patient's lives because of the emotional toll it would take. He then got up early the next morning and, with his own four year old son, made muffins for Spike's birthday.

Dr. Deepak Lachhwani, neurologist at the Cleveland Clinic, who cared for the family as much as the patient. Although busier than we can imagine, he always took time to make sure we understood the issues and options and agreed with the medical team's approach.

Dr. Mohamad Mikati, Spike's incredibly talented and caring neurologist at Duke, who never stopped searching for answers and taught us so much about neurology so that we could make intelligent choices for Spike. Dr. Mikati gave us much more time than he could really afford for a single patient. Without those long talks, I doubt we could have made it to the end.

Dr. Jorge Gonzalez-Martinez, neurosurgeon, the man who ultimately gave Spike his health back. We will never forget what you did for all of us. From the bottom of our hearts, thank you.

Spike. Spike, most of all. This courageous little boy never gave up and never complained through 3,000+ seizures, 3 brain surgeries, 6 hospitalizations, 4 emergency room visits, dozens of IV insertions and blood draws, and over 800 unappealing ketogenic meals. You make your Daddy proud every day. Thank you for being my son.

4 comments:

  1. Thank You! Glad to help Tom.

    I'm sure you will pay it forward as well.

    Best wishes to all of you,
    Ron

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  2. Tom and Jo Jo:

    You guys are the greatest parents. It is amazing how knowledgeble you are and how much care you give to Spike and people around. Very impressive and wish you all the best.

    Best Regards,
    Verry

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  3. This comment has been removed by the author.

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  4. You don't know me, but I saw Spike's story on Yahoo.com. I just wanted to comment and say that I am so glad that he is doing well now! Also, he is such a cutie pie.

    ReplyDelete