It's the eve of Christmas Eve and as I look out of my office onto the bustling interstate, I imagine all those cars sitting in that disastrous traffic are either a) headed to Grandma's house for the holiday or b) headed to the mall to finish their shopping. We will do neither this holiday season. Am I sad, a little. I have always gone above and beyond during the holidays, choosing thoughtful gifts for friends and family and always going all out for Trouper and the kids. This year, I did neither. Yes, I bought the kids a gift (one a piece) but Trouper and I won't be exchanging gifts; our gift is ongoing and is the gift of time.
Financially, we struggle but that's pretty typical of families with chronically ill/terminal patients. Tons of medicine, weekly doctor visits, supplies, special equipment and even special food literally drain our bank account. This is on top of the standard bills; mortgage, cars, insurance, utilities and done on only one salary. I am in a consistent state of robbing Peter to pay Paul and have become a master juggler; keeping my job, Trouper, house, kids, animals, family, doctors, hospitals, schedules, bills and every other need my family has in the air all at once. I do all of it because I love the three of them; Trouper, Ryan and Emily, more than the breath I breathe and I would do anything for them. So this Christmas, I won't feel sorry for us and what we don't have but rather rejoice in what we do have; each other. This has been a very difficult and yes, I realize I say that every year but this one has hit us hard. Trouper's quest for a heart transplant is a roller coaster, Emily was diagnosed with Crohn's Disease, and I was hospitalized twice with my pancreas disorder. Poor Ryan is the only semi healthy one of the bunch! But would I trade one day, no because through it all, we were together, a family of misfits that fit perfectly together.
This is my Christmas letter to all my friends and family, our year sucked but there were good moments. Emily continues to amaze us with her wonderful grades (ended 1st semester of her sophomore year with a 3.3) and positive attitude even though she has to take shots once a month and continues to deal with chronic pain. She was elected into a leadership position with her sorority and hopes to intern with a charity over the summer. Ryan is an amazing young man, continues to live at home and be in the "trenches" with me. He's working for a national car dealership and he's assumed a lot of responsibility for a young man but continues to impress me with his caring nature. In the new year, he's headed into an acting program and he gets more handsome by the day! Who knows, I might be the Mom of an Academy Award winner someday! Trouper's health was a roller coaster in 2014, just a few weeks ago they told us there wasn't much hope and we wouldn't be getting a new heart. New medicines, some LVAD "tweaking" and LOTS and LOTS of prayer have turned that around and we look forward to announcing a new heart in 2015! As for me, well, I still get up every morning and go to work, I still listen to talk radio and devour all news, especially entertainment news. I still love trashy reality TV but this year I've also learned to love scripted TV like Sons of Anarchy and Orange is the New Black. Oh ya, and I still have three people to hug, who, every once and a while, are all under the same roof at the same time. The true meaning of Christmas this year, my family!
Tuesday, December 23, 2014
Sunday, December 14, 2014
Hospital Waiting Room
Hospital waiting rooms encompass the highs of life, those delicious moments of life that you never forget and the lowest of the low moments, the moments when your life is changed forever and usually for the worst. Last week, as I sat in the ICU waiting room, I looked around and realized our family had experienced all of them, and right in the waiting room of Piedmont Hospital.
I've lost count of the number of times I've sat in that hospital waiting room over the past few years but I can tell you I hate it. I hate the magazines, hate the color of the chairs and deplore the smell. I imagine it to be the smell of fear, sadness and anxiety all rolled into one. I also hate how doctors relay good news right there in front of everyone but take families back into the small, colorless room when they need to relay bad news. Somehow it doesn't seem fair. The families in the waiting room form a bond, and should experience all the news; good news and bad news, together.
When Trouper first had his heart attack and was in a coma, I remember being in the waiting room and not being able to breath. I felt like I was suffocating and every time a nurse, PA or doctor came out, looked around for a family, I felt as if I was going to collapse, waiting to hear our name. When our name was called, I often didn't have the clarity to ask questions, usually just nodding or mumbling something incoherent. I got better, got more organized and started writing my questions down in between visits with the hospital staff and day by day, no hour by hour, the visits became better.
That's how the past two years have been for me, I've had to learn to cling to clarity, learn to organize my thoughts and above all, remember to breath. The waiting room at Piedmont has been my teacher, my guide and taught me all those things. Am I thrilled to be sitting there, sick at my stomach with worry? No. Am I thankful to be sitting there, waiting on good news in front of everyone or even bad news in the little room? Yes. Having the privilege of being in the waiting room means that we are still a family of four. That Ryan and Emily can still ask Dad for advice, I can still hold his hand and feel like I'm the most beautiful woman in the world and our family is together. So, even though I loathe being there, I cherish it as well. Guess the waiting room is the true definition of a double entendre.
I've lost count of the number of times I've sat in that hospital waiting room over the past few years but I can tell you I hate it. I hate the magazines, hate the color of the chairs and deplore the smell. I imagine it to be the smell of fear, sadness and anxiety all rolled into one. I also hate how doctors relay good news right there in front of everyone but take families back into the small, colorless room when they need to relay bad news. Somehow it doesn't seem fair. The families in the waiting room form a bond, and should experience all the news; good news and bad news, together.
When Trouper first had his heart attack and was in a coma, I remember being in the waiting room and not being able to breath. I felt like I was suffocating and every time a nurse, PA or doctor came out, looked around for a family, I felt as if I was going to collapse, waiting to hear our name. When our name was called, I often didn't have the clarity to ask questions, usually just nodding or mumbling something incoherent. I got better, got more organized and started writing my questions down in between visits with the hospital staff and day by day, no hour by hour, the visits became better.
That's how the past two years have been for me, I've had to learn to cling to clarity, learn to organize my thoughts and above all, remember to breath. The waiting room at Piedmont has been my teacher, my guide and taught me all those things. Am I thrilled to be sitting there, sick at my stomach with worry? No. Am I thankful to be sitting there, waiting on good news in front of everyone or even bad news in the little room? Yes. Having the privilege of being in the waiting room means that we are still a family of four. That Ryan and Emily can still ask Dad for advice, I can still hold his hand and feel like I'm the most beautiful woman in the world and our family is together. So, even though I loathe being there, I cherish it as well. Guess the waiting room is the true definition of a double entendre.
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