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Learning to Thrive after ALS

John was diagnosed with ALS in January of 2014. Throughout his disease, we were overwhelmed by God's provision of love, encouragement and physical resources, which He so[...] read more

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The Gift of Community

The last few weeks have been such a blur.  On the 16th, I began making my way to New York City for another Legacy Retreat.  This time, Inheritance of Hope brought 21 new families facing terminal illness to the city for a special family vacation. During these retreats, families make memories and also connect with other families and gain priceless support and encouragement.  The retreat John and I were given in 2014 was a game changer for sure.  It was then that we saw the desperation and pain of those who didn’t find their hope in Christ, and we learned that God had much more in store for us than surviving; He wanted to shine through us as we praised Him in our struggles.  And He did.  Now, I continue to see the importance of that experience to others walking that path as I serve and interact with these unique families. 

Though the retreat ended last Tuesday, I am just now able to process and reflect on it.  As I was getting dressed this morning, I was trying to remember the trip and was quickly reminded of one of my favorite parts when I noticed the big bruise on my hip.  On Monday, the volunteers took the kids to Central Park to ice skate while the parents had a lunch date, met with counselors about their kids and made their legacy videos.  I’m definitely no expert, but I’ve skated before and enjoy it.  This was not the case for many of these kids, though.   There was a lot of anxiety about skating, but also a lot of determination and grit.  Once we donned our skates and the gate opened, an impressive line of IoH kids (and volunteers) clutched the wall as they began to make their way around the rink slowly.  Soon after, though, these kids were letting go of walls and hands and skating shakily on the ice alone.  There were falls, a lot of falls.  There were swollen elbows and scuffed up hands (and sore hips of course), but these kids just kept getting back up and, with even more perseverance, pushing forward.  I saw children who were not with our group cry and give up, and I found myself considering the difference.  I’m not sure why I was struck by that.  I should have known better.  Our kids have faced so much more than bumps and bruises.  They have felt the effects of their parents’ treatments and surgeries, medications and restrictions.  They battle fear, anger, sadness and pain in ways most kids wouldn’t even imagine.  For them, death doesn’t just wait in the shadows; it practically has its own spot at the table.  For them, like me, each new thing may be scary but pales in comparison to what they have made it through already.  And each new scary thing has potential to be conquered and can bring a sense of accomplishment, which is worth pain and effort.

I did notice something else as we skated, though…community.  Without coordinating or advance planning, the volunteers who could skate monitored the kids on the ice, while the others supervised those as they came off for breaks.   As we all took turns falling (kids and adults alike), we all also took turns helping, encouraging and checking on each other.  Tween boys stayed together, laughing at and pulling each other up when they fell.  Some elementary aged kids skated around in slower circles just to stay with one of their less confident counterparts.  At one point, the teens in our group gathered in one section, just talking and laughing and then breaking off in groups to skate together.  The connections these kids made in just a few days is incredible.  Like the rest of us, they crave connections with others who understand them, rather than pity or pressure.  This is one of the many things I love about these retreats.  Not only does God bring together volunteers with one heart and purpose, but He also brings these families to each other, and so many of them continue to keep in touch and support each other beyond their retreats.  These families, who face things that are far worse than bumps and bruises, now face them with friends who understand.  What a priceless gift!

Connections…just another reason Tom and I chose to request donations for Inheritance of Hope in place of wedding gifts.  If you haven’t given yet but are planning to, Giving Tuesday is a great day for it! Donations up to $50,000 will be matched!   You can go to to give in our honor.


On another note, the wedding and moving plans continue.  Several of you have asked how you can help.  I really am grateful for the offers and apologize for not letting you know sooner.

On December 8th, I will need help loading up furniture at my house.  The time is flexible and is based on the availability of the muscle. 😉 If you can help that day, please tell me when.

We could also use wedding help.  We’ll be setting up at Brevard Community Church on December 15th from 10am-3pm probably, and we’ll need some food prep helpers at 11am on the 16th, as well as lots of folks to help clean up after the reception ends at 5pm.

Please email or text me if you can help! ( / 828-577-0195)

There are so many moving pieces.  If other times and needs come up, I will let you know.  Thank you all!  One of the greatest gifts of John’s ALS is the community we gained through all of you.

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