Taken straight from my 10 year olds Pinterest board – Words To Live By. I couldn’t have said it any better.
As Parkinson’s Awareness Month comes to a close, I wanted to share our families tribute to this Parkinson’s symbol. The elegant long-stemmed, tea-cup shaped blossomed tulip is the universal sign for Parkinson’s. Last fall Hadley and I planted our “crop”. Paying tribute to her father, hoping for a few to be spared by squirrels, take root and bloom. We hadn’t noticed any signs that the fruits of our labor were successful until very recent and then our eyes were graced with the most spectacular sight we could imagine. Not known for having a green thumb as both sets of grandmothers do, we were overly delighted.
The story of the Parkinson Tulip began in 1980 in the Netherlands when J.W.S. Van der Wereld, a Dutch horticulturalist who had Parkinson’s disease, developed a special tulip. Van der Wereld named his prized cultivar, the ‘Dr. James Parkinson‘ tulip to honor the man who first described his medical condition and his contributions.
The three petals symbolize love, hope and fight. So this spring as you tiptoe through the tulips and admire the beauty of these perennials, please know there are millions fighting this disease, many more families and friends hoping for answers and all in the name of love. Maybe, just maybe it will inspire you to plant these special tulips for someone you love too.
Spring is developing into wonderful anxiously awaited season, with great things in bloom. My bloodshot eyes and continual runny nose can attest to its arrival. Spring means different things to many. In our life, it had always involved spring football with a culmination at the end a “spring game”. This is the first time in 30 plus years -24 that I have been part of, that we haven’t attended one. Knowing how important to Don this tradition is, we started planning. Even if from the sidelines, he would like to watch, this is food for his soul. The plans were to voyage to Boston, a place we fondly called home, to watch the BC Eagles take the field under their new leadership. Then the unfathomable traumatic events occurred and we thought better than to travel. With the devastation that was besieged on this great community we started to place in prospective our simple feelings of wants and looked at the greater city and people’s needs. Moments of prayers followed as we watched and listened to the events unfold, while being in constant contact with our friends that remain there and then we cheered at the conclusion. The Boston College spring game was cancelled, as it should be, but we witnessed an unplanned game, of good vs evil and goodness won!
Life changes all around us, whether we want or are open to it, or not. My youngest daughters beloved preschool teacher passed away from breast cancer at a very early age. How to explain the loss to a 5-year-old child, I thought, was going to be difficult. This was the second teacher / friend we had lost to cancer in a short period of time. A collective group of mothers decided to have a balloon release ceremony to help the children let go physically of something, say a prayer, watch the balloon rise, disappear into a greater place and trust in life again. The kids held on securely to their balloons as they each said something special about Mrs. Debby and then, it was time to say goodbye. As the release happened, I slowly looked around. The adults with tears, myself included, but each child had a grin so wide it was hard not to feel their sense of trust, that in letting go, everything will be ok.
It was with wonderment I watched Hadley. Inspiring to me. Helping me believe that there was a time when we / I were free to accept change. We ALL make adjustments in life and have to accept new realities, whatever that may be and for us, now, that includes no spring football. It’s not just a game but it’s been a way of life that we are letting go of. I believe it hurts Don to his core and for those of us who witness his inner sadness, it is difficult. There are different ways to experience loss and nothing can compare to the tragic way the people of Boston are grieving, but I do believe that living with a disease is its own form of loss. As an adult I wish I had the ability to let go of something, truly release it, and not hold on, as my 5-year-old does. I am re-learning.
My oldest daughter despises swings. Her face turns a ghostly shade of white at mere push. It’s always been that way. I remember our first outing to a neighborhood park in Boston. She was approximately 6 months old. I was so happy and proud, bow in hair and camera ready to capture the fun and a wide toothless smile. I placed her in the black baby swing. I began the count down 3….2…1.. pushed ……camera posed to shoot and….. instead of delight, I witnessed sheer panic, followed by tears and screams. This couldn’t be! I quickly scooped her up, held her, and tried again. What child doesn’t like a swing? Maybe my build up was too much. As if in lather and repeat, I tried and kept trying. Smaller pushes each time and still the same reaction. The walk home was like a walk of shame. We had a classic case of park failure. I called Don disappointedly and relayed the news. As par for course, his practical reaction – “well guess there isn’t a need to purchase playground equipment for the back yard.”
Over the years we, meaning I, periodically kept trying and at some point in her life she decided she would throw me a bone and stay on for a second, then declare that it was “high enough” and be done. Now when she goes with friends and they run for the swings, she pretends. I watch her hop on and barely ever do her feet leave the ground.
EXCEPT for one special time of year, with one special friend. All bets are off on this day! In the fall, at our local church they hold a fair fundraiser and they have flying swings. Our first trip there was with a dear school friend and her family. Immediately, I crossed it off the list as something we did not need tickets for but my mouth dropped in surprise when Libby said she and Ashley wanted to do “it”. “The swings?” I asked. “Yes mom, the swings.” I then proceeded to lecture that they wont stop the ride in the middle just for her. The response, “no mom, I’ve got it.” Rolling with the punches, I watched her get on by herself and then the count down began 3….2…1…..liftoff ensued…….camera ready and this is what I captured.
Sheer delight, but even better than that, simple friendship. I am not sure who extended the hand first but the important part was that both hands found each other. We continue to go back every fall, together, and I think it’s the only time that Libby will open herself up for a special ride.
That’s how I view support groups and not just Parkinson’s specific support groups. I’ve been asked several times; do we belong to any or if I have recommendations for such. My answer is, it is hard to find just the right one. Continue trying because someday your feet will leave the ground. Someday, you will know when you have found a safe place to share. It will be when you reach out to hold someones hand for support and they will be there to not only receive it but, not let go until the ride is over.
As we are shipping out products your stories are coming in and for that, I am forever grateful.
When we launched the MagnaReady website and I spoke with the developers, I specifically requested a section in which we encourage people to share their stories. ALL people….ALL stories – mothers, fathers, sisters, friends, children, aunts and uncles of loved ones with mobility issues. We all have a unique story and as we are shipping shirts out, these stories keep us on track. I personally read everyone of them and am equally touched by what is shared. So honest, so raw and all in the same spirit of people looking to ease a daily burden.
I hope to share some stories along the way. For the last few years in preparation to launch MagnaReady, I have done extensive research of groups of people that we hope to help. Yesterday however, I read a story that gave me great pause; this is one group I hadn’t thought of. I will highlight a piece.
“I am purchasing this product for my father. He is 67 and he is blind. His sight was taken from him about 10 years ago. He continues to hold on to every bit of independence he can. ”
We hope to stay true to our mission statement- of helping as many people as we can, dress with dignity. Please keep sharing your stories.
Parkinson’s Awareness Month means just that…Be Aware. Aware that many people are fighting to find a cure, several are securing funding for the possibility of relief, droves are digging in to promote education, treasured people are teaching how to live fully with the diagnosis and umpteen individuals are empowering acceptance.
My eldest brother and his family, traveled recently to Los Angeles to assist The Ohio State University Buckeyes basketball team in their quest to make it from their Sweet Sixteen standing to the goal of NCAA champions. He sent me a text – no words -just this picture.
I quickly showed it to my girls (ages 5 & 10) and their faces lit up like fireworks. Not many people under the age of 20 really can say they know the film works of Michael J Fox. This had nothing to do with Marty McFly. “Awesome” Libby exclaimed. Hadley said “lucky” and wanted to know if they had met him. At that moment, they didn’t feel alone. Their awareness helped my girls feel accepted. Happy that their 10 and 13-year-old cousins would extend a silent hand to say not only do we understand but we are here to support you. It says we stand beside you, with you and in kid language, we have your back.
Thank you Mike and Beth. Awareness can be small simple gestures too.
April is National Parkinson’s Awareness month. Our second official “out- open and proud” month. We had been living in a secluded world of don’t ask, don’t tell. Making the announcement or declaration that you have Parkinson’s currently comes with as many side effects as the medicines Parkinson’s patients take on a daily basis. At the core of every tremor or rigid movement is sleeplessness of how the disease will manifest, trepidation of being shunned, fear of ignorance and terror of loosing a job. The worry is endless.
Our angst stemmed from living and working in a sports arena where the environment is much like Tiger Woods and Nike’s new ad which states, “winning takes care of everything”. We spoke soon after our diagnosis with an attorney friend in Boston who recommended Don notify his employer and as to anyone else, well, that was up to us. So we took his advice. Don told Tom. We told our parents and then asked them to respect our privacy and keep it to themselves. They honored our requests. We lived our lives. Challenges came up- as did questions. I was always amazed by our true friends- because they never asked. Not that they didn’t care- it’s just that they knew if we needed to talk about it- we would. They didn’t need whatever was happening to us to be defined.
I remember being at our first NC State bowl game. We were at a kickoff luncheon and a coaches wife, that was new to Tom’s staff, asked Don brashly- in front of boosters and alumni- what was wrong with his arm? and would it (infer he) ever be “normal”? Both Don and I witnessed her husband kick her under the table, as if to tell her to shut up but her ignorance was already on display. Don simply answered, no. We never felt the need to explain. Other times, people would inquire and we would say he had had a stroke. Who cares what it was. If you were asking, most likely, we knew you were already judging.
I’ve read many peoples personal stories of their Parkinson’s coming out party- not telling- revealing to some or just simply confirming but July 2nd, 2012 is a news day I will remember. Bill Geist, CBS Sunday reporter announced via a video message that he had been dealing with and hiding from his Parkinson’s diagnosis. “I told no one. Not even my kids.” For 10 years he and his wife lived with this secret. He says “he didn’t want to be known as the sick guy” and that for “personal reasons he was afraid he would get laid off or wouldn’t get promoted”. When he was asked whether it was a difficult decision to come out this way. His answer, was simply, “a very difficult decision”.
Someday, I hope Don will speak to how he felt about informing the people he cared for that his life would be forever different. More importantly I hope he speaks about keeping it inside for so long. We went to great lengths pretending not to have this disease. It started by just refusing to let it control us but at some point it changed into something more. We began planning recreational things around “good” times of day, avoiding certain social situations where it may be an issue, donning sunglasses when he could to disguise the blank look that many Parkinson’s suffers have, being sensitive to Dons low voice and helping him repeat himself, always sensing when it was time to go. The list goes on an on. Hiding the disease became a full-time job in itself.
- When I “came clean” to a select few, all I remember were tears. I couldn’t stop crying. I couldn’t believe I had held it in for so long and even after all the time that had transpired, I still couldn’t believe it was our reality. It was as if verbalizing the diagnosis finally made it true. As a caregiver you often see how people respond and internalize things. We often see it all and in that “all”, I realized that the fears that kept us from disclosing it were happening whether we were forthcoming or not. I can report, all of our angst and trepidation came as true as a Disney trip to the Magic Castle. It’s as if Cinderella waived her wand and voila, but it all happened, regardless of the way we chose to handle it.