Crazy For Cody - July 12, 2008

Home

July 12, 2008

Have you ever had one of those "bigger than me" moments? I've had yet another one. They come, in my life, about once a week. A moment where I'll pause and see the bigger picture - I'll get a glimpse from an eternal perspective - I'll realize that our trial, although crushing, is serving a greater good.

About 5 months ago I was on Children's Hospital's website trying to find info about their swimming pool. I happened upon a link to a contest they were having. It was called "Family Choice Award" and it was an opportunity for families to nominate thier favorite Dr. for the award - an award for exceptional service and specifically for Dr's who "partner" with their patients in a meaningful way. The entry consisted of some forms + an essay about the Dr. you were nominating. So I went to work. I spent about 5 days off and on - crafting an essay about Cody's neurologist Dr. Saneto. I had Don read it, I had others read it. I'd leave it alone for a few days, then come back with a fresh set of eyes and make some edits. I thought it was a pretty good representation of how amazing he is to us. I sent it in with fingers crossed - hoping that finally WE could do something for him! (instead of the other way around.) No word for months. I figured so many people had entered, they'd chosen someone else's essay. Then 2 weeks ago I got the call! "We received your nomination and we have decided to award Dr. Saneto the Family Choice Award. We are going to surprise him on July 11th while he's in a neurology conference and we want you to be there!" I was floored! And excited. And nervous! She said I could bring Cody, or not - that it was totally up to me. So that was one stress - do I bring him and chance that he'll barf, pass gass, have a seizure, scream, etc during this meaningful award presentation?? Do I leave him at home so I can be stress-free and focus on my speech? I decided to leave Cody at home and I got a sitter - particularly because he was having bad seizures the few days prior to yesterday. But at the last minute, as I worked on my speech (they asked me to make one! yikes!) I kept thinking - this speech is about CODY. He should be there! Who cares what he might do - this is the real world - this is a hospital - and I'm sure they'll survive if he dares to make a scene. So I took the sitter with me and showed up at 8:30am yesterday morning with Cody in tow! I'd actually even managed to slip in a shower, hair and makeup before I left thanks to my niece staying here. I'd prepared something to say - but was nervous. It would be a room full of neurologists - I didn't want to be all emotional - but I wanted to convey our gratitude. I didn't want Dr. Saneto to be embarrassed - it was a hard balance. As it turns out, his wife and son came too! We all met (the awards committe, his wife and son, and about 10 hospital "big wigs" who love him and wanted to see him surprised.) 15 minutes before his neurology meeting ended we all stormed into the room. As I came in with Cody followed by his wife, Dr. Saneto - who was white as a sheet - sputtered: "that's my wife, and that's my patient!" I think he clued in pretty fast as to what was going on. The emcee announced "Dr. Saneto - you have won the Family Choice award for this year. We are here to honor you." I think he looked pretty choked up. Suddenly the room filled with more and more people from the hospital. THen the emcee turned it over to me - introducing me as the person who wrote the winning nominating essay. I took center stage, with Cody and Dr. Saneto by my side, and said the following:

I have a 3 year old son named Cody who had infantile spasms – which has morphed into intractable epilepsy. We live a pretty desperate existence because of Cody’s intense, frequent seizures, and his equally intense behavioral issues. It is very easy to feel overwhelmed and hopeless. In a world that tells us “your son is doomed” or “there’s not a lot of hope for him” – Dr. Saneto has always said, “anything is possible.” His optimism and positive attitude have helped our family to be realistic, but still hopeful about our son’s future – and our future. We never feel rushed during our appointments. We feel heard, understood, and that our Dr. truly cares about our son’s welfare – and about our family’s emotional health. We feel he is a member of our team – or as we call it, “Team Cody.” As a mother, I’ve often had my input discarded by Dr’s. But I feel Dr. Saneto values my opinions and intuition. At each visit he clearly lays out all of our options, he listens to our feedback, and he helps us make a decision we feel good about. He’s always making us aware of new treatments and options on the horizon. One of the greatest blessings given by Dr. Saneto is his incredible gift of being available by email. When I called his nurses with questions about Cody’s condition, he took the time to email me thorough answers rather than just relaying the complicated information through his nurses. He’s also guided me by email through many harrowing days of seizures. And a few days later, he took the initiative to email me, to follow up on how Cody was doing. It takes such a burden off my shoulders to receive an email from our neurologist – rather than feel like I’m bugging him. And his emails often include personal comments like, “how’s the baby” or “are you guys getting any sleep yet?” Those comments make us feel like we are real people to him – rather than just a number. He’s been our best advocate in the school system by providing important letters explaining Cody’s complex condition and how it impacts his ability to learn. I never feel I am being a bother when I ask for “one more note” for the school…and that says a lot knowing how busy he is! He’s been our family’s advocate – even taking the time to write the state to support our need for respite because of Cody’s inability to sleep at night. Because of his note, we were granted overnight respite that pretty much changed our lives.During a 4-day hospital EEG, Dr. Saneto took the time to patiently answer every question my husband and I had about possible brain surgery for our son. It was clearly after hours, yet he was happy to hear us out and even paused at the end to say, “anything else you want to ask?” Although his news wasn’t good news – it gave us so much peace of mind to be able to ask every question instead of being rushed out the door – or being told the bare basics. On a recent trip to the ER, Dr. Saneto met us in our room on a day I’m sure he was already booked solid. He helped us figure out what to do next. I never expected to see him in person that day. And…we were sent home with a plan. That’s something I really appreciate about you – at the end of a session he always says, “so we have a plan!” I need a plan. Oh boy do I need a plan! When you are completely overwhelmed with just managing life with a child who has seizures and such severe developmental delay – it’s pretty amazing to have this Dr. to help us sort through our choices and try to make sense of our options. To me the best way to describe Dr. Saneto is this: In a storm tossed sea of questions, medicines, therapies and fear…he is an anchor for our family.

He brings sanity to a life that often feels totally out of our control. We moved to this area to seek out the very best care for Cody’s catastrophic condition. Dr. Saneto is better than we had ever hoped for. His expertise, partnered with his compassion, has been a Godsend to us.

------------------------------------------

His wife cried, I cried, Dr. Saneto looked choked up, and Cody did great! He sat quietly and after my speech, he let me hold him up and introduce him. They hired a professional photographer to come in and take photos of all of us. Cody did so well and I was so glad I brought him. It put a face on this entire ceremony. Dr. Saneto simply looked me in the eye and said "thank you" very meaningfully. I got to meet his wife and son which was a treat. She was so warm and gracious. She told me, "if I had a sick child, I would want Russ for my doctor. Thank you for honoring him." I said back, "you know you are also the recipient of that award. Because of you, he can do what he does here at the hospital. So thank YOU for being his support and for putting up with the long hours. She seemed to apprecate that. What a neat family he has. And it was clear by the number of people who crowded into the room that Dr. Saneto is well respected by the whole hospital.

As for me, I felt good about the whole thing. The hospital asked me if I'd be willing to participate in various things as a "family representative." I said, "if our crazy schedule allows, sure!" So that was a fun twist at the end.

One of the "big wigs" came to me afterward and said "this has rallied the whole neurology department, I want you to know." That was neat. I was told that Children's focus is "family centered" service and hearing from "real" families always gives them a shot in the arm and an encouragement.

So that was my "bigger than life" moment this week. For me it was one more evidence that in the midst of this furnace, God keeps providing moments of clarity. I stood there in that room full of neurologists, hospital big wigs, etc. thinking - wow - I am holding court in front of a lot of really important people! And I was able to say thank you to someone who has consistently made our lives better - Dr. Saneto. He is "one of the few" Dr's in this journey who has blessed our socks off. I've wanted for so long to bless him back - to somehow share how truly grateful I am that he takes the time to email me - to supervise Cody so closely. And God gave me that perfect opportunity. And as I glimpsed Cody in the room next to me - with all these attentive eyes on him - it warmed my heart. Once again my little hero is making an impact. By honoring Dr. Saneto we are also saying, "this is the way it should be done" - and it raises the bar, I'm sure, for the rest of those who don't do it so well. Dr. Saneto is our 5th neurologist - and until him - it was a series of disappoinments.

So there you go - a great big warm fuzzy for my week. Hopefully for Dr. Saneto's week too. He wrote me an email thanking me and saying he was heart touched. yay. I'll post the photos when I get them.

Love, shawna

< Prev		Next >

[ Back ]