Me-Sarah01-detail-featured-w740x493Jeannie Ewing and I “met” virtually about a year ago. In that time, we’ve worked together at, where Jeannie’s a regular contributor, and I learned about her family’s incredible story.

Part of what makes it so incredible to me is how very hope-filled it seems. I would not have expected that having a child like Sarah would inspire hope, but that’s exactly what I find when I read about Jeannie’s experiences as mom and about the many procedures and hurdles they face.

Today, I invited Jeannie to share about #Art4Sarah. It’s a story that is, quite frankly, a gift to the rest of us.

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Tell us about #Art4Sarah.

ruth-smucker-out-of-the-remnantWhen Sarah was born on March 16, 2013, our lives were forever changed (as everyone – by now – knows).  Other than medical personnel, the very first people to meet Sarah were our dear friends, Noah and Ruth Smucker.  I had received a text message from Ruth asking if I would like to receive Holy Communion while convalescing in the hospital on Palm Sunday, and the thought of being strengthened by Christ’s Body and Blood uplifted me; it was an oasis in this very dry, dark desert.  Of course, I agreed.

As soon as they arrived, I saw tears well up in Ruth’s eyes, which was a very rare occurrence for me to witness.  Noah asked to hold Sarah, and as I passed her into his arms, the first words he spoke were, “I think you have a little saint here, Jeannie.”

Ruth read the first reading, Isaiah 43:16-21, and as she read the following passage, she said through inspired tears, “I really feel God is speaking directly to you with this, Jeannie.”

My heart was simultaneously breaking and ascending to new heights; it was a spiritual confounding that was unfamiliar to me at that point in my life.  I did not know how to discern what emotions were driven by postpartum hormones, unprocessed grief, or spiritual consolations.  In that moment, I smiled and thanked them both, internalizing their undeniably prophetic words.

In that moment, the Lord used our close friends as His mouthpiece.  He spoke to their hearts and through them to offer a bittersweet message of hope not unlike that of Anna’s and Simeon’s prophecies to Our Lady during the Presentation of Baby Jesus in the Temple.  Noah and Ruth were our Simeon and Anna that day.

Noah and Ruth shared a story with us about this particular piece she named Out of the Remnant.  I was rendered speechless when Ruth clearly and distinctly received the message that this painting was to somehow benefit Sarah’s journey.  Immediately our friends chose to discern how the Lord was calling them to sell this amazing piece and offer our family 100% of the proceeds to defray ongoing medical costs and care for Sarah.

Now, five months after its genesis, Out of the Remnant is available for purchase at Ruth’s online marketplace.  Two other pieces are also available for purchase, but all proceeds earned specifically from Out of the Remnant will benefit Sarah’s medical care.

It is impossible for us all to see the complete spiritual tapestry that God is weaving, thread by thread, as our lives and journeys intertwine with one another.  Even so, Out of the Remnant is what I would consider one segment, one visual segment of a grander whole that perfectly defines our family’s journey with Sarah.  It is a message of hope in life’s darkness, the beauty of redemptive suffering, and the gift of all human life – in every form and stage.

How has Sarah impacted you in her short life?

Sarah was such a surprise – not in the conventional way people describe surprise babies, as resulting from an unexpected pregnancy.  The day before I knew I was pregnant, my husband and I were staying in a hotel in Cleveland, OH and had returned from the Rock & Roll Hall of Fame Museum.  Housekeeping had tidied our room, but what was most notable is that there was a Miraculous Medal on the desk by our bedside.  I asked my husband if it was his, and he showed me where his was.  Mine is on a chain I wear around my neck, so it was completely mysterious as to where this medal originated.  I had a hunch from that incident that Our Lady was sending me an unspoken message – that she was closely traversing with me through my pregnancy with Sarah.

My pregnancy was healthy, and I enjoyed it with much more ease and joy than I did my first pregnancy with our daughter, Felicity.  With Felicity, I worried about everything, but with Sarah, I was much more laidback.  None of my three ultrasounds revealed any concerns about Sarah’s development; she appeared to be measuring slightly bigger than average, but otherwise had a healthy heartbeat and all of her necessary organs.  It wasn’t until she was born that my husband or I knew about her condition.  This caught us completely off guard, but we placed her in God’s hands as we wept and navigated our fears of this rare chromosomal anomaly called Apert Syndrome.

Sarah is not a burden.  She is such a joy.  She has changed our lives forever and helped Ben and I confront our prejudices, our fears, our selfishness.  Her existence alone has taken us from a place of longing for a “normal” family life to embracing a very unique one; moreover, Sarah’s visible differences have somehow shown us that we are all different in some way, and our differences should be celebrated rather than shunned.  As a result, Ben and I feel much more at ease with our quirks and foibles than we did growing up in a culture of cookie-cutter people.

Sarah’s condition also naturally elicits difficult (but necessary) conversations with Felicity.  Where Felicity once believed her beauty was in the way her hair or eyes looked, she now responds with, “Mama, it’s my heart and soul.”  She is more acutely aware of the gift of what is inside a person rather than how a person appears externally that is of value.

What’s the biggest challenge your family faces as a result of Sarah’s special needs?

There is a real loneliness in our journey with Sarah.  While she offers an incredible gift of joy to everyone she encounters, and we are full of gratitude for her generous and bright personality, my husband and I find we cannot relate to most other parents.  The extent of our relationships with other Apert families is limited to networking through social media unfortunately.  Because of the rarity of her syndrome, there are no other families that understand this journey who live close in proximity to us.

Most people wrongfully assume that, because Sarah is so robust and has recovered quite well from her surgeries so far, we don’t have much more on our plates than a typical family.  While we are grateful for her quick recovery and healing following surgeries, our daily life still revolves around weekly physical and occupational therapy, as well as keeping up with at least a dozen other medical specialists; from what I understand, that is simply the nature of Apert Syndrome.  Every system in the body has the potential to be affected, most commonly hearing loss or vision problems, heart concerns, gastrointenstinal issues, and dermatological challenges.

How will the #Art4Sarah initiative impact your family?

What’s really amazing is that Ben and I have been friends with Noah and Ruth Smucker for several years now.  We met them through our parish’s young adult ministry before we had children and were able to hear their amazing conversion story (which Ruth briefly touches in her blog).  Ruth is an artist and has a degree in art, as well, but when one views her art, it is clear to see that it is a gift she was given by God.  Much of Ruth’s art is very prophetic, often very spiritual and symbolic.  She often uses mixed media to create amazing visual effects and textures.

Noah and Ruth were the first people outside of medical personnel to meet Sarah while I was still convalescing at the hospital following my c-section.  They immediately forged a very unique and visible bond with Sarah from that first meeting.  Both have told Ben and me that Sarah has a special mission from God and that she will teach many through her life’s challenges.

This past summer, Ruth was inspired to paint Out of the Remnant, and she prayed for its purpose.  The Lord clearly showed her that the painting was to benefit Sarah and our family; the moment I first saw it, it pierced my soul.  I truly felt it was a visual portrayal of the message of Sarah’s life – redemptive suffering through the tear and crown of thorns of Christ, yet the joy that transcends the sorrow through the colorful palette.  Noah and Ruth took some time to see how this painting could benefit our family, and after much prudent deliberation, they determined it would be best promoted through social media venues using the hashtag #art4sarah.

The goal is twofold: 100% of the proceeds from every painting sold will be donated to our family for Sarah’s ongoing medical needs, so this initiative brings awareness – not only of our family’s situation, but also of the myriad other families who are in a similar situation to ours.  It draws people to learn of our story, but also to be exposed to Ruth’s gift of art.  It is my hope that this will bring her much-deserved visibility.

How can we help and support you?

People can purchase a high quality, giclee reprint of Out of the Remnant for $40 on Ruth’s marketsquare website.  She signs each copy, and these would make excellent gifts with the holidays coming.  They are limited edition prints, with only 75 being sold.

If people do not want to purchase a print but would like to donate to our family, they can contact me through our website.

Another way of supporting our family is to follow our journey on Facebook and through our blog; I tend to update people on Sarah’s medical procedures as well as daily life in the Ewing home.  We really feel called to share our story with others in the hopes that it will inspire and encourage people who are in a dark place in their lives and have perhaps lost hope and faith in God.

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