Friday, September 13, 2013

I get by with a little help from my friends

If you've been reading here long you know by now about the amazing group of dedicated people in our little community who actively make change in lives by believing in and being the good.  They are The Canton chapter of The Foundation for Community Betterment.  Twice they have adopted our family as recipients for their annual fundraiser Rocktoberfest.  Three years ago it was heading into Danica's decompression and fusion and last year it was for me and the extreme financial burden my surgeries and health concerns had added to our world.

In just two weeks, On Saturday, September 28th, we will be celebrating the 6th annual Rocktoberfest event being held at Hoover Park. It's not too late to plan to attend.  You can buy tickets here and get all the details.  If for any reason you cannot attend but want to donate to the deserving recipients for this year you can also do so on the site.  The money you donate is tax deductible and goes directly to help with these causes.

One of the three recipients is a new friend of mine, Halle Land.  Halle suffers from Ehlers-Danlos Syndrome just like Danica and I do.  We did not know one another until recently, and I had no idea she was being nominated for help from Betterment while our friendship was growing.  I had heard from a friend about a year ago about a young woman who spoke at an event at Malone about the grief of suffering a chronic and "invisible" illness.  She was shocked to hear her talk about EDS and even more intrigued to hear her mention a neurosurgeon in Maryland who had done a lower spinal surgery on her.  The very next day I was at a birthday party and met a woman who also knew Halle. She suggested we try to connect.  Over the next week or so we found one another on facebook and wrote a little back and forth.  It wasn't until Halle was headed for her upper spinal surgery with dear Dr. H earlier this year that I knew I had to meet her face to face. I took one of my dearest Kelly Rae Roberts angels given to me during Danica's surgery and made a care package around it and drove it over to her house.

In a moment our lives and hearts were entwined by so many things almost no one else in the world could understand.  Although we face our own unique comorbid conditions related to our EDS and different surgical needs and treatment our daily lives are very much the same as far as pain and how we relate to God, ourselves, those we love and the outside world because of this suffering.  Knowing her, getting to know her best friend, Kelsey, who lives with Halle and her husband and helps with her care and later meeting another dear EDS friend from Canton but now living far away, Sarrah, has been such gift.  And there is another thing too. Halle's mom is the stranger who took me to the airport that morning I had to fly to Maryland by myself. In the dark this woman I had never met showed up in my driveway to take me.  She had a bag packed and was ready to even buy a ticket on the spot and go with me.  Who does that?  She knows all too well what this life is like.  She has seen her daughter walk, stumble and crawl through trips like the one I was taking. Everything in her heart told her not to get involved.  She had too much in her own life to deal with. Still, she showed up.

I found out on that trip I needed my hardware removed from my skull base and neck.  I came home Friday to have a major abdominal and pelvic surgery at Cleveland Clinic on Monday.  Four weeks later I was back in Maryland for my hardware removal.  Can you guess who the woman was that came so Dan could go back to Ohio to work?  I wrote about her a few posts back. She became the good.  Just like that. Days off from her regular life.  Her own physical challenges of driving that far.  Her own gas money and miles on her van.  Her uncertainty about what my condition would be like or how staying in a hotel room with someone who was so sick and really a stranger would affect her. She just followed her heart and became this gift of person to me and to my family.

This is what Betterment is about.  Yes, we raise money to meet monetary and physical needs of recipients. For Halle and her husband Mike the money raised will help move the laundry facilities upstairs so Halle will be able to do laundry without being completely dependent on Kelsey and Mike to do this for her. Remember when I couldn't do laundry at all at my parent's house because of the stairs?  I know first hand what a gift this is.  They long to become adoptive parents of foster children someday.  This will make an impact for a long time on Halle's ability to help care for her own home and family despite disability and pain.

Aside from all the physical and tangible good Betterment is mostly about what John Lennon said, getting by with a little help from your friends.  The above picture is Kelsey, Halle, Sarrah and I on my couch in zebra jammies.  Those girls showed up on my doorstep on a night when I was suffering and so discouraged with my recovery.  (In case you don't know the zebra is the mascot for Ehlers-Danlos patients.) Both Halle and Sarrah were headed with Kelsey as their guide back to Maryland that week for scans and visits with Dr. H. Sitting there together felt like we were four strong instead of one weak and broken.  This is what Betterment is doing not just in  this big event but every day by living out reminders of how we must continue to care for each other in kindness.  None of us should be alone.  We aren't alone.

Dan, Delaney, Danica and I have only survived because of the grace of God and the love shown from near and far . . . over and over again. As I face this jugular compression issue and my desire to seek healing outside of traditional medicine I know I will be back here on my knees praying to God and asking you humbly to help us financially. This used to be one of the hardest parts of our long journey.  It is now the most heart changing thing I can share.  You entering in to seek my healing and the best life for me so I can serve is a miracle.  I never knew people could care this much or love this much or be this faithful for this long.

PLEASE take a moment to get to know Halle on her blog.  Consider what you might do to contribute to Rocktoberfest or if you could attend.  Perhaps you have felt called to be involved in some way out in our community.  I encourage you to consider attending one of Betterment's meetings and finding out the other great things they are accomplishing in our town.   We get by with a little help from our friends.  Be one of the friends.  You never know how quickly your life could change and you might need the very same love.

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