This story seeks to increase awareness and understanding of the unique needs of individuals diagnosed with life-changing illness or injury and their families by providing insight into the life of a man as he went through diagnosis and treatment of brain cancer (Glioblastoma Multiforme - or GBM).
This one's not the first Father's Day I've spent with my dad, but it's hitting me hard anyway. There is so much stress and turmoil going on in my life these days related to my job that I don't feel like I am in "top shape" when it comes to being prepared to cope with the grief that still so often catches me by surprise, either with its timing or its intensity or both. I looked through some old pictures today and found so many of my dad doing things he loved to do, whether it was sitting in a lawn chair in the sun reading the paper, running, sitting on the beach, or spending time with his family. In all of them, he looks happy and healthy and as if he is perfectly content, and for that I am so grateful, except for a song that keep playing in my head:
Today I found myself thinking about how on the day after my dad had died, I stood in the shower in the guest bathroom of my parents' house, crying and crying, feeling so much like my heart was breaking that I thought I needed to hold my hand over my chest to keep it together. Never had I imagined - or even thought to imagine - that a day like that day was coming, or like the days like the ones I figured were still to come. I had no idea how I was going to get through even that first day without my dad there physically with me, much less through the rest of my life. I felt like I was falling down a well in slow motion, and I knew that at some point I would seriously need to reconsider my world view and, in essence, myself. So many times, I've thought back to the last night that my dad was in the hospital and to the way that he insisted on having all the lights turned out and for Jennifer and me to be on either side of him as he tried and tried to sleep. I remember how he reached out in the darkness to grab my hand and Jennifer's without even looking, and, recognizing the trust, the love, and the vulnerability in that move, I quietly started to cry there beside him in the dark; I was so grateful that he was so sure that we were right there with him. What I wouldn't give for just one more day with him. I wouldn't even care what we did together; I just have so much to tell him and to talk to him about. It's like I'm the one now reaching out into the dark to grab a hand to hold, and I'm so grateful that I have people who love me (and tolerate me) enough to serve that purpose, but it's still something that's so much tougher that I could have ever imagined.
Happy Father's Day to the man who was the perfect father for me. I miss you and love you more than I can adequately express.
Like other families, my family has some quirky holiday traditions. Some of them are from Christmases past, things I remember doing as a child growing up in my parents’ house, like letting our dogs, who lived outside, come into the den so they could be in the Christmas morning pictures with us, and like getting goodies in one leg of a pair of panty-hose instead of in our handmade stockings that hung over the fireplace.
In fact, one of the most vivid Christmas memories from my childhood was a tradition repeated year after year and was something that annoyed my dad greatly: my sisters and I always had a “sister sleepover” in one of our bedrooms on Christmas Eve, and every year we found a way to get up after our parents had gone to sleep so that we could check out what Santa had left for us downstairs. Every year, after our parents told us to go to sleep, we either stayed awake (feigning sleep when they checked on us before they went to bed) or we set an alarm so that after we went to sleep we could get up in the middle of the night. One year, we woke up in the wee hours and went to check out what Santa had left for us, and I discovered that I had gotten a new bicycle! Despite the freezing cold temperatures outside and the snow on the ground, I went out in my pajamas and without shoes (the pajamas were the kind with built-in feet, so I figured that was good enough!) and rode my new bike up and down the street until Dad caught me a little while later. Another year on Christmas Eve, Dad told us that if we set an alarm before we went to sleep, he would just turn it off so that we wouldn’t get up. Hmmm. We retaliated by setting TWO alarms, one on the bedside table (which he later turned off) and a second one hidden under a bed. Mission accomplished; sorry, Dad, but we were EXCITED!
Some of the holiday traditions from my childhood are continued in my family today; for example, after each present is unwrapped on Christmas morning, the wrapping paper is wadded up and thrown on the floor so that by the time all of the gifts have been unwrapped there is a mountain of paper in the room in which the kids are able to completely hide, which they do until someone counts, “1, 2, 3” and then a photo is taken as they jump up out of the pile of gift wrap. We also always give our pets Christmas presents, and we always open gifts one at a time.
A few of the things we usually do may not happen this year; we may take some time off and resume these things later, or we may just let them go. One of the things I am mostly avoiding this year is listening to Christmas music; every song reminds me of my dad and fills me with such sadness that he is not able to be here with the rest of us. Maybe next year those songs will be happy reminders for me of his beautiful singing voice and how he loved to listen to Christmas songs and hymns; we’ll have to wait and see on that one.
Thirteen years ago, my sister J had her first child, a daughter who was born too early and subsequently had to stay in the hospital in the Neonatal ICU for several weeks. During her hospital stay in a city over 100 miles from where my sister and her husband lived, my family took turns visiting, and we stayed at the Ronald McDonald House near the hospital.
Though the days while my niece was in the NICU were terrifying and exhausting, there was a happy ending: my sister got to bring her beautiful, healthy daughter home, a child who tomorrow becomes a teenager! The story actually repeated just over a year later when my sister’s second child, another daughter, was also born early, this time for different reasons than the first time. Another long hospitalization, another roller coaster ride, another extended stay at Ronald McDonald House, and – thankfully – another recovery and another beautiful, healthy baby who is growing up just fine.
Since that time, my family has been committed to supporting Ronald McDonald House Charities and its efforts to help critically ill children and their families. When my dad went on ahead and people asked us to which charity we would like donations to be sent, we knew right away what Dad wanted us to say: Ronald McDonald House Charities, an organization with a special place in all of our hearts and something that we associate with healing, good news, and new beginnings.
In thinking about the changes for my family this holiday season, we decided that we want to do something positive, something helpful and hopeful, and something to honor Dad, and so we signed up to cook and to serve Dad’s favorite meal – spaghetti, salad, and apple pie – to the children and their families at our local Ronald McDonald House on Christmas night this year. We are all looking forward to this tribute; it’s a perfect example of the way that making an effort to be helpful is often at least as helpful to oneself as it potentially is to the recipients of that effort.
Happy holidays!
To Dad, whom I know will be there in our hearts as we take part in our Christmas tribute at RMH.
