Support Groups And Swings

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.

Image

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.

7 thoughts on “Support Groups And Swings

  1. I think support groups are great. You just have to find the right fit. Unfortunately there aren’t many in my area and they are hard to get into. So I blog instead and it’s a great way to meet people who share the same struggles as you. The story you told about the playground reminded me of the days when I was about 5 and my father (of blessed memory) took me to every swingset in the northeast. Sometimes I think back to those days and how I could run and run and never seem to stop running. I must admit now I can only dream of or imagine that. I am amazed at the cruelty of Parkinson’s Disease and how much it robs from you. I get my depressed moments too which is perfectly natural, expected so I don’t beat myself up over it.

  2. Absolutely Magna I love your blog and it’s very therapeutic for me. I have my moments of depression of course, but I am determined to use the time I have now while I can still move, and use it positively and not waste this time because I know the reality is that my Parkinson’s Disease will affect my future. My advice to any Parkinson’s patient comes from my own personal battle with it and it is to not waste time when you still have motor function and live your life to the fullest!

  3. I think I failed to mention that I am young onset 45 years old diagnosed in March of this year and after a second opinion by my neurologist who is a Parkinson’s specialist, his theory is that a traumatic brain injury I suffered in 2005 struck by car, caused the disease to occur prematurely. He said I would’ve developed it when I was elderly because I have a genetic mutation. It’s really difficult dealing with this illness when you are younger. Groups and services are geared toward older patients. I was also repeatedly misdiagnosed for years. I think the medical community needs to change the perception of this disease as being exclusively geriatric. Many patients who are under 50 have the disease right now and don’t even know it. Early diagnosis is crucial to improving the quality of life in all Parkinson’s patients no matter what the age of onset. By the time I was diagnosed, I’ve had the disease since the impact age 36 nearly nine years. That time wasted I could’ve been treated which is frustrating.

    • Your hope, I believe is everyone’s! I’ve said it many times but my hope is that until there is a cure the outward signs of Parkinson’s will start being as accepted as a beautiful bald headed cancer survivor.
      Thanks for sharing your thoughts!

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