Life on Purpose: The value of friendship

I have a dear friend who I have known for over 50 years. We met when we were three. My earliest memories of our friendship is spending hot summer days running through sprinklers in her backyard and playing school in her screened porch.

We also set up towns and villages with our many barbie dolls. She always had the best barbie cars and campers. When I got the barbie airplane for Christmas one year, our play time was complete.

Though we haven’t lived in the same state for over 30 years, it’s easy to catch up on a twice-a-year phone call or touch base with a quick text. A few weeks ago, she came over on the New London Ferry and we caught up over breakfast and coffee. I gave her a whirlwind tour of the North Fork. We shared some laughter and a few tears.

Technology has made it easier to stay in touch with old friends and to make new ones as well.

I met my friend Liz over the phone about five years ago. Our trials connected us as we were both fighting the same disease in our children. Liz is also one of the only people we know who has CCM3 and is asymptomatic.

We shared a common bond in our most terrifying moment. Both of us had rushed unconscious children to the hospital because of bleeds in their brain. We held our breaths as mothers do — hers as her son was airlifted and mine as my daughter was loaded into an ambulance. Both children were rushed into emergency brain surgery. I didn’t think anyone could ever understand the pain in my maternal heart until I cried on the phone with my new long-distance friend.

The more we talked— I think it was for hours that first day- the more we had in common. She alluded to her faith and I caught on to some Catholic clues like Mass, and religious education programs in the local parish. Liz jokes that when she heard my husband and I graduated from a renowned Catholic university she knew we were “hard core.” When the conversation turned to homeschooling, we knew we were forever-friends. The parallels in our lives were crazy.

Liz and I finally met in person at a fundraiser I was hosting for the Angioma Alliance. She flew all the way from California to help us. We met again in our CCM3 clinic in Chicago last year and were able to introduce our teenage kids, all three who are affected with this genetic mutation.

This past week, we gathered with families from around the country and Australia and the UK to hear from medical doctors researching for a cure to cavernous angiomas and the genetic mutations associated with these.

Most of us had two things in common: a loved one or self affected by the disease and Facebook support. The power of social media connections were propelled through the real-time conversations and the sharing of meals, hugs, laughter and tears. I joked that our name tags should have included Facebook profile pictures to make it easier to connect!

Liz and I grabbed every opportunity we could to share our weekend. We were often asked if we were sisters. “Soul sisters” was our reply as we smiled, delighted that people took notice of our virtual bond now excelling face to face.

We laughed into the night over shared bottles of wine. Liz brought bottles from Napa Valley, from a winery who hosts a very successful yearly fundraiser for the Angioma Alliance. I shared mine from the North Fork.

The greatest connections that were made that weekend were those of the children. Kids, from toddlers to young adults, whose lives were affected by cavernous angiomas had the opportunity to share and laugh with one another.

Johanna especially enjoyed spending time with a small group of children with CCM3, the rarest expression of this disease. We exchanged tearful goodbyes amidst promises to meet again on social media forums and webinars and by email and phone. Powerful connections, initiated online were strengthened face to face.

Johanna and I stayed in the Chicago area to do talks and book signings. The very next day, we met yet another mom of kids with special needs, from Indiana, who I met online. What started as a mentoring relationship, led to us co-authoring a journal for caregivers.

In the fall, Johanna and I will return to the Midwest to do a conference with caregivers with this new friend from Indiana. Another virtual relationship was strengthened face to face as we met each other’s children and shared our common bond.

In the course of the whirlwind week, we did talks and book signings. By far, my favorite talk was for the caregiver parents of children and young adults with Down’s Syndrome.

During my presentations, I speak of the need to connect and engage with one another for support and encouragement. Just before the talk, the organizer of the group told me that she was serving cheese and crackers and bottled water.

My mind immediately went to the bottle of very expensive wine that was carefully wrapped in my luggage. Liz had shared it with me and our entire conference, most especially those affected by CCM3. The winery owners themselves understand our struggles, as they are helping to raise awareness and large donations to research for a cure.

As I presented, the parents responded with interactions of humor and tears. I ended the evening sharing this special bottle of wine, toasting to each of us, parents who once did not know one another who now come together in a common bond of the joys and struggles of raising kids with special needs.

As I lay down to sleep that night, reflecting on these bonds of friendship from all over the world, I thought of this verse from Ecclesiastes 4:9-12:

The Value of a Friend
Two are better than one, because they have a good reward for their toil. For if they fall, one will lift up his fellow; but woe to him who is alone when he falls and has not another to lift him up. Again, if two lie together, they are warm; but how can one be warm alone? And though a man might prevail against one who is alone, two will withstand him. A threefold cord is not quickly broken.

How true that friendship and support, even when initiated and nurtured in the online world of Facebook can be a powerful connection of bonds not easily broken.

Eileen Benthal is a writer, speaker and wellness coach with a B.A. in Theology from Franciscan University. She is the author of Breathing Underwater: A Caregiver’s Journey of Hope.

Eileen and her husband Steve live in Jamesport and have four young adult children. Their youngest, Johanna, is a teenager with special needs.

Eileen can be reached at CareforaCaregiver.com.