Gratitude - Tami

I learned a lot about gratitude in the most unexpected place, from inside the walls of a hospital.  Over the course of a year, I watched my young, vibrant, and athletic daughter become virtually lifeless, living in the shell of a body that was uncooperative and there was nothing I, nor anyone could do to calm the chaos.  Helplessly watching the minutes, days, hours, weeks, months, years slip past us all.  Our family of five was uprooted in ways that only a family facing the life-threatening illness of a child can understand.  I spent sleepless nights researching, desperately seeking answers to find a way out of the dark, lonely hole we were in.  

In the summer of 2008, I remember waking up and climbing out of my bedside chair, a place future me would spend the better part of nearly a decade.  I was so numb.  We were over a year into an illness so confusing and had already traveled to seven different hospitals in California and top facilities around the country.   Specialist after specialist took on her case, most unable to even understand what was happening, let alone control the bomb that went off in her body.  The answer we got time after time was, “We’re sorry, medicine just hasn’t caught up to her yet.”  

I stumbled out of the room in the direction of the elevator in search of coffee.  It was the moment when the coffee was placed in my hands with a smile that I realized I had to search every day for gratitude, for things that could keep me going. Finding positivity in so much negativity is never an easy feat, but I do think we can re-train our brain with practice.  I believed that if I could find just three things I was grateful for, starting with that simple cup of coffee after a restless sleep, I could survive the storm and keep a positive attitude.  

Time marched on, things got worse and better and better and worse, failed treatment one after the other, with the most unexpected twists and turns.  I remember one doctor comparing her situation to an old garden hose, just when you stop a leak, another one or two sprang in another place.  One by one, system failures, with no way to reboot.  Throughout all that time, when she was unable to drink, eat or walk, I knew in my heart that there was someone out there that could help us, someday and in some way.  I never believed that what I was witnessing was how my daughter was meant to live out the rest of her days.  We were told by one doctor to stop the desperation seeking help and “Let her go with her dignity. We will make sure she is comfortable.”  With tears streaming down my face, I nodded, accepting fate as it was in that hallway, but as soon as he walked away, something from the depths of me knew I would never agree to throw in the towel.  Never.  Ever.  Ever.  I removed him from her care.  To others, I know it seemed hopeless, but I knew if I took that side, where would that leave her?  She deserved better from the world that I brought her into and because of that, shouldn’t I fight with all I had for her?

Even through the hardest times, the moment my feet hit the floor, I chose three things that I was grateful for before I even took a step.  In the beginning, coming up with them wasn’t easy.  My husband was deployed, my other kids were sad and alone, I missed my dogs, etc.  I could focus on that but how does that leave me anywhere but hopeless?  Putting in the practice of the gratitude 3’s came easier with daily practice.  One day my gratitude 3’s were water, the wind in my hair riding my road bike on the river trail, and a visit from a friend.  Other times, gratitude was seeing my daughter light up when her surgeon walked into her hospital room or the smiles she got when her favorite nurses came on shift.  Sometimes, gratitude was the way she would crack jokes, putting everyone in the OR at ease with laughter before one of her 50+ surgeries and procedures, truth be told it’s probably 100+, but to count is absurd.  I would get the reports of her OR shenanigans long after I kissed her and left her gurney in pre-op, choking back the tears I reserved only for the times she couldn’t see them.  She had learned to not only exist, but also survive in this medical world, continuing to shine her light through all of our darkness.  My gratitude plan was the ONLY thing that kept me above water all of those years.  

In early 2015, 8 years into the mess, I stumbled on the answer at 1 a.m.  We were at home.  I couldn’t believe it, I thought I was dreaming.  The next morning, with sunshine beaming through the kitchen window, I got up the courage to sit down at my laptop and write a desperate email to a high profile physician in Chicago.  I put painful truths into words, physically in print in front of me, gasping as I clicked send.  “My daughter hasn’t eaten in 8 years, she exists on IV nutrition, her liver numbers are climbing, we’re told liver failure is imminent, and she’s not going to survive another year like this.  She’s only 17, I want so much more for her, you are our only hope.  Please help us.”

I received a phone call 45 minutes later from his clinic coordinator with the words, “How soon would you be able to travel to us?” And, “Please Fed Ex all records immediately.  I can’t promise you he’ll accept her, but he’s wants to see her.”  This was it, our chance.  The only hope we had left.  Away we flew.

On a dark and gloomy Chicago day on October 14th, 2015, after many weeks and rounds of chemotherapy followed by a life saving stem cell transplant, my daughter received her life back.  On Christmas Eve, 2015, at 5 p.m., we walked out of the hospital and have never spent another night there again.  

Gratitude looks different to me now.  It’s enormous.  My morning count of three looks different.  It’s gratitude for a life.  My gratitude number one will always belong to a doctor who took a chance on a desperate mom and with his years and years of research and experience, pouring his heart and soul into his work, was able to give my daughter back her life.  Gratitude two and three look random but the number one spot will forever be filled by the man who saved her.

My daughter and I just returned from a river camping trip together yesterday.  From my paddle board on the river, I watched her run down the hill to me with her dog following closely behind and no matter what the future may hold, forever imprinted is that moment watching her happy.  Full of life. Running.  Laughing.  I caught myself breathless and felt the tears burn my eyes.  I’ll never forget what I saw.  Life.  We grilled hot dogs, her favorite, and had s’mores over a campfire and I got so much joy in watching her eat. 

We get to make new memories. We’re the lucky ones. Rich in gratitude. Lessons learned in a hospital.

xxTami