In a family of 12 you learn very quickly the meaning of the word HELP. Help your sister tie her shoe. Help drive your brother to basketball. Help your mom by doing the dishes. Sometimes you knew you were “helping” by not asking for anything – because your mom and dad may be consumed with something else. I am not a stranger to the word or concept of lending a helping hand. As a child I witnessed my dad help complete strangers. I recall hearing, “Mike, why are you late tonight?” “I helped someone who needed a lift somewhere.” “Who dad?” “Nobody I knew, just someone down on his luck.” My dad’s quiet, humbling kindness was always there and from my mom, the same. She would also throw in, after a search of something missing, “say a special prayer to St. Anthony”– the patron of lost things.
As a mother I witness help. Libby helping Hadley master a back bend – lesson I hear – You can do anything! Libby helping Hadley learn to read – lesson I hear – I know you are smart and capable AND worth my time. Libby teaching Hadley the rules of tennis and life – lesson I hear – I will always be here for you if you need anything . Hadley schooling us all on her made up knock knock jokes – lesson I hear – It’s important to always laugh. A recent favorite of mine… “Hadley, this is what you do if someone makes fun of dad”. (which unfortunately has happened) Lesson I hear – Siblings understanding strength and unity.
As an adult I’ve helped. I make an attempt to help families, both that I know and who are complete strangers. I volunteer my time, thoughts and resources – all of which I know I can do more and should. I am trying to being an advocate for Parkinson’s. One of the manifestations of the disease is a quiet voice and I am happy to lend mine for the cause. I try to help my own family build the tightest indestructible wall of love, that no one OR disease can break.
H E L P
But this four letter word has been haunting my soul. I am an avid reader, lately, not as much for pleasure but for research. The Michael J Fox Foundation published a Facebook post that encouraged people to “share” or comment. Most were lengthy compelling stories about life challenges and changes. I read them all but when I close my eyes at night I still see one mans response. It was four simple letters – one simple statement and if I were being completely honest, a desperate plea. It simply read “Help”.
Today I feel like asking. Help us find sanity. Help us find patience. Help us find peace and if I could channel my mother, St. Anthony, Help us find a cure!
Click Here For Audio – Carly Simon
TWO LITTLE SISTERS LYRICS – CARLY SIMON
Two little sisters gazing at the sea,
Imagining what their futures will be.
The older one says, as her eyes look around,
“I will go as far as the corners of the town.
I’ll plant a little garden, flowers everywhere.
And pluck the most fragrant for my hair.”
Two little sisters gazing at the sea,
Imagining what their futures will be.
The younger one stands with her eyes open wide.
And says, “I’ll go as far as the corners of the sky.
I’ll gather all the stars each night as they appear,
And pick the very brightest one to wear in my ear.”
I didn’t choose you and you didn’t choose me.
I didn’t choose you, who would guess we’re from the same family?
But, what will you do when the nights get cold?
When the stars grow dim and your dreams seem old.
Watcha gonna do when winter calls,
And your flowers fall from the garden walls?
I’ll come home to you, you’ll come home to me.
My love will be your remedy.
I’ll choose you and you’ll choose me.
We’ll be two daughters dancing by the edge of the sea.
The best remedy for Parkinson‘s.
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.
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.
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.
We are headed in to the fourth quarter (football pun intend) of 4th grade. Hand in the air with the traditional four finger- last effort sprint – salute. When the year kicked off, the phrase “Toto we are not in Kansas anymore” was referenced. We just seemed to be entering into a whole new world. Homework, which use to be completed on the drive home, now was taking a much larger effort- to be exact hours- sitting at a desk- immediately as we entered the house. Snack served and sometimes she was there so long, snack rolled into dinner. My youngest likes to pretend she has the same requirements from her pre-school teacher. So to keep Hadley occupied for this new extended period was just as big of a challenge. Often I heard, Mom whats 2+2 = followed by an older voice asking what the exponent of x² + x² is.
Then, the first big assignment of the year, a oral book report on a historical figure, with the exclusion of sports figures. They would take on their selected, teacher approved figure dressed in full character. Endless options- so many to choose from. Libby and I started brainstorming. She was looking for someone fashion related- “too easy” I said- it wouldn’t stretch her boundaries. A past president I suggest- “too boring”- a factual history buff she is not. She rattled off who her friends had already selected- Walt Disney, Johnny Appleseed, Harriet Tubman, Neil Armstrong. All with great teachable lessons to learn. Thought ensued as I went to bed that evening. I shot an email to her teacher- in short it read….. Mrs. Adcock- I would like Libby to learn more about Muhammad Ali and present him for her book report. I know that sports figures are not permitted but because he suffers from the challenges of Parkinson’s disease, like her father, I would really like her to learn about the man before the disease. In true Mrs Adcock fashion, she enthusiastically agreed and we went to work. At first Libby wasn’t thrilled with the life lesson I was imposing on her but soon after she watched a few videos and read a book – she was enjoying it. Her book report was finished without any fights! As a family we watched countless hours of interviews of Muhammad Ali – pre and post Parkinson’s days. She even had Mrs Adcock cue one to the smart board during her report. She was happy with the end result, as was I.
In the process of this report, I too was inspired about the man before the disease. We found the following quote about things being impossible.
I printed it out on the heaviest weight paper I had and stared at it for days on my design boards. Each glance, concentrating on a different word.
IMPOSSIBLE – DECLARATION – DARE
All seemed appropriate at different times. As the final details of MagnaReady needed to be decided, I choose this quote to be inserted in every package that we send out. On the front is his saying and the back is our care instruction. A detail that is a declaration. Here’s to the dare. If my 10 year old can dare to break out of her comfort zone and do a report to help educate her class not only on a story of a man but the disease he battles, and my husband can stand tall everyday while he faces the double dare this disease throws at him, then certainly, I can do my part and dare to reinvent a solution to a problem for so many. Make life easier when it’s not. Dare to make a difference. Dare to stand proud as a family. Dare to declare we choose to live our lives without the word impossible.
The full quote –
Impossible is just a big word thrown around by small men who find it easier to live in the world they’ve been given than to explore the power they have to change it. Impossible is not a fact. It’s an opinion. Impossible is not a declaration. It’s a dare. Impossible is potential. Impossible is temporary. Impossible is nothing.”
This is a big week in the Horton house! Our oldest child turned 10! Landmark of double digits! We officially have a “tenager” in our midsts. As per usual, she asked probing questions of the day she was born- what time EXACTLY? what did we do the night before? when did she crawl? did she cry a lot? what were her first words? when did she get her first tooth? and do we still have the clothes she wore home from the hospital? Somehow, I do remember most of the details without consulting her Bible – aka baby book. We peruse a few photo albums where we thought it necessary to document every expression. But there’s one photo that has always catapulted to the top of my list of favorites. It’s a simple giclee black and white picture of just Libby and I. Her side profile precious. Her curly locks of hair naturally flowing, with a bow of course and an innocent loving smile on her face. It resides on my neatly cluttered desk. I often look at it and instantaneously I have a grin on my face.
It seems even more appropriate to me this week, as we launch MagnaReady on a larger scale. I can’t help but draw inspiration from this photo. It’s just a mother and daughter sharing a tender moment and doing something we all take for granted – buttoning. Something so insignificant to most of us, that is until you or your loved one are unable to do it on their own.
So here’s to 10! Here’s to MagnaReady! and here’s to the beginning of independence!
When I was getting married, some 19 years ago, I purchased Emily Post’s Etiquette Book. It was important to me that I master the art of correspondence. I still enjoy sending and receiving a snail mail thank you. I am usually quick on the draw and have them addressed and in the mailbox by weeks end. It’s one of those things that I take delight in completing as I cross it of my to-do list. I have a deep affection for heavy weighted letterpress with a colored lined envelope. An old boss gave me a beautiful Waterman pen with a note that said “always take pride in your signature” and I have treasured and used it for many years. Now If only my hand writing was as beautiful as my mothers calligraphy!
So sitting down to compose the thank you’s on my list should be easy …. right? Truth be told I’m struggling and they continue to haunt me. I decided this morning I must tackle it today. It is easy to express a thank you for a small token or gift but how do you truly express gratitude to the people who have helped you in your greatest times of need? During our recent lives journey many people helped our family stay afloat- not missing a beat or a basketball practice! I am very closed- I can do it myself mentality – a flaw of mine I know. I am like most people. I don’t want to put anyone out- take time from their families or make anything about us more important than anything that is happening in their lives. We all have our challenges and who am I to waive the white flag and say we need help.
So here goes a few…..
My daughters teacher must think I am the strangest person in the world! She has offered several times to bring a meal, take Libby home – anything to ease our burden. Who are we to ask a mother of 2, a full time teacher/ educator, a wife, a daughter, a sister for help. It’s just not in my DNA. She must know though that I am just thankful for the role she plays in my daughters life everyday as the best teacher who smiles when she sees her, gives her an extra hug, makes her day as normal as a 4th graders can be and most importantly, instills in her the confidence to be a great person! So, thank you Mrs Adcock.
To all the people who brought meals. I’m not really sure I should thank you because the comments from my girls were blunt. “Mom, this is really good! Why don’t you make this?” “Mom – so and so knows how to cook…. you should spend more time asking her for recipes.” Joking aside, not having to worry about planning, shopping and preparing was a huge blessing – so thank you!
To the friends that helped us laugh during the process, that was the best medicine. I have to share one story that just ticked me to no end. The day before Don was to be connected I received a text from a friend that said “I just remembered a dream from last night. Don was at a party with a huge smile on his face walking around pinching people and saying…. look what I can do. I can pinch again. You were mortified and Don and I were laughing hysterically.” BOTH of those things would be true! So thanks for helping exercise our smile!
One last thank you to share, for the family and people that helped with our children -this is the hardest one for me- our deepest appreciation is extended. You have loved them like they were yours. A close friend of mine just celebrated 40 years of life. I was quiet emotional because I wanted to express to her how selfless she’s been to me in this journey. At her dinner, I gave a toast- I felt myself quivering as I read these words
“When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving us advise, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can stay with us in an hour of despair, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend that cares.”
Our sincere thank you,
Don and Maura Horton