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Archive for June, 2016

Faith’s Gift

Faith’s Gift

By Nancy Deming-May

June 2015

John is a handsome man.  He has smooth olive skin, expressive brown eyes and a slight thinning of his dark hair, belying his middle age.  He exudes warmth and a comfortableness with himself that comes with the years.  I met him at an office gathering with my husband’s company.  He had just come aboard and did not know many people in the group yet and I found myself engaged in conversation with him.  He spoke of his time in the military easily and was grateful for the experiences it gave him – both in terms of professional and personal growth.  He moved easily from work to home life discussion, with an openness that made it easy to talk – even though you just met him.

After we got past what he does for a living, I asked what he did in his spare time – as this is often where you get the most interesting insight into what people enjoy – especially when they are older and have had time to explore a number of different interests and usually have figured out which ones really bring them joy.  I was surprised when John answered, “I take care of my family,” as this is not the usual response you get from a man his age – maybe “I enjoy spending time with my grandkids”, but not “take care” of them.  John went on to explain how he had a four year old daughter in addition to his 25 and 27 year old children from a first marriage.  He further elaborated that he was on his third marriage – and that this one was “working” he said with a humble grin.  I smiled encouragingly, and he began to tell me about his youngest daughter, Faith.

Faith was a miracle child from the beginning.  As her mother was older at the start of her pregnancy, she received the full battery of gestational genetic testing and they determined early that their young daughter in utero had Edwards’ disease.  This is a chromosomal abnormality similar to Down’s syndrome where there is an extra 18th chromosome.  It’s also called Trisomy 18.  John explained that less than 1% of Trisomy 18 pregnancies make it to full term and survive the first 24 hours after childbirth.  This condition is marked by heart problems, cleft palates, and kidney malformations, along with other serious issues.  Eighty percent of the babies born with this condition are female.

John went on to explain how his wife Christina was so incredible in caring for this special needs child, how she couldn’t give up on her throughout all the surgeries; how he would have to insist she go to sleep while he would take a shift of watching over Faith after an especially challenging procedure.  He also shared his gratitude for the hospital staff at the Children’s Hospital (CHKD) – how they doted over her and treated her like a rock star because of her determination to survive.

His special bond with and respect for his wife reminded him of a story about their dog Belle – a rescued pit bull and lab mix that he said was the most loving, loyal and appreciative dog he had ever been around.  He explained how the dog had possibly been abused – or at least injured – and its right front paw had been smashed before she came to their family.  They had paid for surgery for her and she was able to walk on it okay, but it was still deformed such that the toes on either side of it stuck out – a “paw-claw” – much like the letter Y in American sign language – where the thumb and pinky jut out while the middle fingers are folded down.  This hand sign imitating Belle’s deformed paw became John’s and Christina’s special sign between each other.  They would use it for farewells and reassuring signals of connection – “I got your back” or “I love you”.

I shared a story or two about our rescue dogs and then steered back to ask about Faith.  Was she still alive?  John shook his head and looked away wistfully.  “She would have been two the end of this month.”  He went on to describe how she had suffered more medical issues after a recent surgery and her lungs had filled with fluid and her heart was failing and they had to make the incredibly difficult decision to let her slip away in peace – away from the artificial and endless whir of machines.  He shared how the whole ordeal had brought him and his wife and four year old daughter closer and he was so grateful for all of them – especially Faith – even though she had blessed them for such a short time.

John then pulled out his phone and showed me a photograph taken of Faith shortly before she transitioned from this realm.  She was adorned in a billowy white gown, looking small and angelic with large dark eyes and an ever so slight hint of a smile on her lips.  She was lying on her back and you could just feel the love around her – from John and his dedicated wife Christina – and you knew she had been a gift to all who knew and loved her.  Then John pointed to the upper left hand corner of the photograph – there was her little right hand, her middle fingers curled down toward her palm and her thumb and pinky splayed out wide – in true Belle “paw-claw” fashion – a beautiful, simple gift from Faith.

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