Sunday, October 7, 2012

Let's all go to the hospital!


Let me tell you about my wife. This week (today, Sunday the 7th, to be specific), marks our 17th wedding anniversary. Here's how Cindy spent the days leading up to the happy occasion:


  • Friday, 9/28: Sam wakes up, comes downstairs, and immediately starts coughing up blood. Cindy rushes him to the local emergency room, from which he is transfered to Children's Hospital in Boston. Later that day, the doctors determine that collateral arteries (these are a side effect of his unique heart condition) are leaking blood into Sam's lungs. Sam is intubated and a procedure is performed to seal off those collaterals.
  • Saturday, 9/29 - Sunday, 9/30: Sam remains intubated, asleep, and chemically paralyzed as his body resists the removal of the breathing tube. This is a child who once walked mere hours after an open heart surgery. Sam is the medical bounce-back champion of the universe. Needless to say, the fact that he seems to be struggling scares the living shit out of us.
  • Monday, 10/1: a brave resident decides to extubate Sam in the middle of the night. He responds, but still seems to struggle. He's clearly not himself and he needs constant oxygen. Cindy and I are convinced that something is still wrong with him. That evening, I go home, as I had every night since this started. I have a conversation with God that I am not particularly proud of and that I would not care to repeat. Cindy spends her 100th straight hour in the hospital.
  • Tuesday, 10/2. I have my fourth chemotherapy appointment, rendering me unable to go to Children's anymore. Cindy is now caring for Sam at his side and advising me over the phone on which meds to take to deal with the side effects of the chemo.
  • Wednesday, 10/3 - I start feeling worse. Sam slowly starts feeling better.
  • Thursday, 10/4 - Bouce-back Sam finally shows up! Sam and Cindy come home. 
  • Friday, 10/5 - I can't eat. I can't drink. I can't get out of bed. Sam is much better, but still fragile. Cindy, exhausted from a full week in the hospital without respite, now has two patients at home to nurse back to health. Then, despite pounding Gatorade directly through my feeding tube, the Visiting Nurse orders me to go to the emergency room due to dehydration. I secretly give her the middle finger when she's not looking. The ER lubes me up for a couple of hours and, mercifully, decides not to admit me. I call home, wake Cindy up, she wakes Sam up and they both pick me up at the hospital (Sara, thankfully for her, was away with a friend). I immediately start making up excuses for my German oncologist, who is going to angrily say "Your feeding tube is your mouth - use it!" an annoying number of times when he accosts me about going to the emergency room.
  • Saturday, 10/6 - I start to feel a little better.
  • Sunday, 10/7 - Our anniversary arrives. For a present, all I can give Cindy is a day of me eating and drinking semi-normally. She gives me a completely awesome Weber Smokey Mountain Cooker Smoker (I had told her earlier in the week that my chemo nurse was raving about the smoked meats her husband made). I immediately contemplate brisket. We promise to do something nice for each other when things are less crazy. When that might be, I have no idea.
When people use the phrase "Words cannot describe..." to start a sentence, it's almost always a lie. The words that describe that which "Words cannot describe" are usually the words that immediately follow "Words cannot describe." It's a cliche meant to cheaply add weight to something that's usually sappy and melodramatic. What I'm trying to say is, I do not take the use of the phrase "Words cannot describe" lightly. That said...

Words cannot describe my admiration and love for Cindy. Nor can they describe how sorry I am that I am the unwitting instrument of her pain. I know that I have only a cursory understanding of the level of suffering, hurt, anger, and worry that plagues her every day, every hour. She hides it well, but you can see it in those rare moments when she's pleasantly distracted by visiting friends or a funny moment on TV: true happiness is so rare that, when it comes, she beams again. 

Mostly, though, there is just the courteous covering up of a sadness she cannot escape, and which only announces itself when her considerable armor cracks for a moment. These occasions are rare, as she is ever mindful of the impact her sadness will have on the kids.

Cindy is the bravest, kindest person I have ever known. I would, quite literally, be dead if not for her. She didn't deserve to have a son born with a bum heart and a special brain then, and she doesn't deserve a broken husband now. I swear to God, if we escape this thing, I will exist only for her happiness. She deserves nothing less.

And there will be much smoked meat on the table.

5 comments:

  1. Josh, you are both very lucky to have each other. I hope with all my heart you escape this thing. You are a beautiful human being and your family needs you around. Love and light coming your way. Be strong! Bless you, Paulette (Matt's friend)

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  2. Words can not describe the lump in my throat.
    I love Cindy too, and I never even met her...
    Hoping and imagining (to send a strong positive vibe) better times ahead for you guys, real soon.

    Elaine

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  3. I think you gave her an amazing gift...this post. The most beautiful expression of love and appreciation that I have ever read. You are amazing...and brave and compassionate as well. Seems that you, and your incredible wife, were a match made in heaven. Love to you both...

    Love
    Jess (and Jeff)

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  4. I read Ruth Douillette's blog regularly and jumped over here to see what her former student was up to. My, it appears your family has been given a most unwelcome challenge to say the least. First, let me say how how very sorry I am you have to endure this, and second, how well you all seem to be coping with the situation. Everyone in your family is to commended. Plus, you are a very good writer, Josh. Keep fighting and keep writing. I'm adding you to my blogroll over at scmorgan.com.

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  5. Stay strong, have faith and keep fighting man. God bless you all.

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