Monday, March 5, 2012

Courage for Camden

The moment on December 5th when I had to say goodbye to Bryan as they took him down the hallway  at NYP-Columbia to the operating room to have open heart surgery was the absolute lowest point of my entire life – I was terrified to the point that I felt physically ill – sweating, nauseous, dizzy – I was convinced that my own heart was going to stop. But as horrible as that moment was, had it been one of my munchies – Charlie, Dagny or Georgie, I think I literally would have fallen to the floor and broken into a million pieces. It’s not that I love them more, but that Bryan is an adult. He understood. This terrible, no good, mixed up, very bad thing had happened to him, and this was what we had to do to fix it. As I stood there in my neon pink shirt, clutching the handle of my inappropriately large suitcase, sobbing, he smiled at me and gave me the web address of a blog where he had secretly written incredibly special letters to the kids and I. {have I mentioned how amazing my husband is?} Had it been one of them, my munchies would have woken up just like their daddy did - in an overheated lock down ICU unit full of loud machines and people in hazmat suits and masks, hooked up to a ventilator, tubes, monitors, and thankfully not a bypass machine {which is the most awful thing I have ever seen, and I thank God every single day that he didn't need one}. but they would have had no idea what was happening, or how they had gotten there. or what was wrong, and if they were ever going to be more comfortable, or get to go home. and i would be unable to do a single thing about it. Mamas can always, always do something to fix things, except, well, when they just can't. 

charlie, bryan and dagny 2.29.12

 Since we have been home in Florida, I have found myself compulsively following the stories of several "heart babies" on Facebook {thanks Tove!} One in particular has captured my heart - a 6 month old baby boy named Camden  with gorgeous brown eyes who was born with several congenital heart defects. He underwent his first heart procedure at 5 days old. Since then, he has had over a dozen procedures on his heart, including open heart surgery this past December. What was supposed to be a 5 day hospital stay following his surgery turned into a 9 week (and counting) fight for his life. During his hospital stay, he has fought his way through many life-threatening complications, the most tragic to his family being a stroke that caused damage to the entire right hemisphere of his brain. Camden is living in a PICU unit with his parents and twin brother, Nolan, who does not have medical problems. Can you imagine living in a hospital room with twin 6 month olds?

I have never met Camden, or his mother or father, or any of their friends or family. I don't know them, or anything about them. But I have this urge, with every single cell in my body to help them in some small way if I can.  Because I do know what it feels like to stand at the other end of that hallway. I know what the aftermath of open heart surgery really looks like.  To instinctively turn in fear when the heart monitor screen goes from  BEEP BEEP  to BOOP BOOP. To sleep in a brightly lit waiting room with 30 other people with only a  sheet borrowed from a nurse and my cellphone tucked under pillow, praying not to wake up to bad news. To stand in front of a hospital window on a sunny day, and look down at the people happily going about their day, stopping at starbucks, chatting on their phones, and wanting to pound my fists on the window and just scream at them about how unfair life is. Because time has stood still for me, and everyone else is just going about their day, like nothing is wrong up here in this nightmare I am stuck in. 

I don't know what day Camden had his open heart surgery. Maybe it was the same day as Bryan's. It just as easily could have turned into a 9 week (and counting) nightmare for us as it has for Camden. There is an incredibly scary percentage of patients who don't make it out of the OR at all after a total pericardiectomy. But we made it. We made it. And it has changed me forever. The afternoon that we left on the plane for NYP-Columbia, I sat on my kitchen floor and prayed to God to please, please let Bryan come home to Florida, let us all come back home again as a family. And we did. So that is my prayer for your mama,  Camden. That she gets to bring her family home again 

If you are interested in helping Camden too, a Mom's Group that I am a part of {the CMOMs - super fun mamas who raise money for local families in tough situations}, is having a huge yard sale and bake sale on Saturday, March 17th from 7 a.m. to 12 p.m. at the entrance to NewHaven at Abacoa {on University Drive} -and 100% of the proceeds are going to Camden for medical bills. Maybe you have some toys or clothes that your munchies no longer use, or you feel like baking something, or maybe even have an extra $20 to throw in the pot. Or just come and shop  with a friend- we will have a TON of stuff. Whether it's a little or a lot, it will make a big difference to this family. Because believe me, knowing that people are pulling for you, makes all difference in the world. 

xoxo Mary

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