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Smile

Tuesday, May 26, 2009 , Posted by Kent Robson at 6:53 PM

'When I smiled...the light of my face was precious to them.' (Job 29:4)

Amazing grace, how sweet the sound, that saved a wretch like me, I once was lost but now am found, was blind but now I see.

There is a picture of a little boy who is sleeping peacefully, his head lying snug on the neck of a yellow, scruffy dog. They are both sleeping at the foot of a hospital bed, oblivious to the activity around them...completely content and at peace with the world. Its the picture of two best friends, comfortable with their togetherness. There is a tracheal tube, slithering out from under the boy's body, providing every breath. A wisp of a grin is peeking out of the side of his face...its a face that seems to have at peace for awhile. The boy is Connor Scott Millard. His 'best friend' is his service dog Casey.

Connor is a sweet, bright, funny boy who now lights up heaven. He is forever 81/2 years old.

For a moment in time, God shared his grace so that others may see, through the incredible life of a child.

Twas grace that taught my heart to fear and grace my fears relieved
How precious did that grace appear, the hour I first believed.

Connor was born 9 weeks early, a very special boy with multiple medical issues and special needs. Throughout his young life, he seemed to collect diagnoses like others collect baseball cards. Like a rainbow of colored M&M's, Connor had a colorful litany of medical 'issues' and 'accessories' that supported his fragile life. He had Mitochondrial Disease, a disease that affects the energy that the body needs to function; and seizure disorders that began at infancy and continued throughout his life. He lived with a trach and was ventilator and oxygen dependent, as well as a GJ tube for relieving pressure and draining fluids. He had dysmotility, chronic distention and constipation, a condition called CIPO, leading to the shut-down of his digestive system. Because of CIPO, he had an IV line in his chest, which was used for nutrition (TPN) and medication.

Connor also had severe anxiety disorders, a sensory processing disorder, and "PDD-NOS", an autism-spectrum disorder (ASD). In the fall of 2006, Connor was diagnosed with a very rare blood disorder called HLH, which caused recurring bacterial and yeast infections, requiring frequent hospitalizations. In the spring of 2007, he was found to have immune deficiencies; his bone marrow was not producing enough blood cells. In September, 2007, Connor succumbed to his multiple diseases and died.

However, it was not his multiple medical issues and special needs that defined him, but his incredible feisty spirit, a tender, loving heart...a spunky spit-fire little guy who changed the lives of those he touched. In her blog, Connor's mom writes:

'Today I laughed hysterically about my son and his antics. Sometimes you laugh, sometimes you cry, and sometimes you do both at the same time. Grief is a strange, strange thing.

My mom and I were telling stories about what Connor was like in the 'hostible'.
Due to Connor's significant developmental and emotional challenges, as well as his really funny sense of humor, he had very specific things he would say and do in certain orders. Connor was very neat, he never got dirty, or wet. He wore certain clothing in certain ways. In the hospital, Connor had to have his schedule of medications and treatments in just the right order at just the right time. This before this, that after this, those just like this. It gave him a sense of order and made him feel safe and okay. With so many things in his life that were out of control, this gave him some sense of predictability and he clung to it.

Connor would get super duper excited when his next medication was due. This was a marker that time was passing, so he was excited! He knew just what to do, how to do it, and how to INSTRUCT everyone else on how to do this task in just the correct way.

It was hysterical to watch the first time he instructed a new staff member. To see the expression on the Nurse or Doctor's face as this little guy would take the medication or other piece of equipment from them and shake his head or wag his little finger, or put his hands on his hips in dismay at their "grave error in judgment", was just priceless...the funniest thing ever! They'd look at us like, "is he for real?" and we'd just smile! (Deb Millard, Caring Bridge, 2009)

The Lord has promised good to me, his word my hope secures,
He will my shield and portion be as long as life endures.

Forever etched in the visage in time is Connor's smile. He had an amazing smile. But it wasn't just any smile. It was a smile that was charged with power. His smile could send shivers of good feelings up and down the spine of those who met him.

When Connor smiled, it filled his face like sunshine fills the earth. His eyes would lock and load and they would pierce through any facade that one might have. People just felt good when they were around Connor. Everyone was his friend.

If smiles were flowers, he filled a thousand bouquets. If smiles were sunshine, he brightened many days.

My chains are gone, I've been set free
My God, my Saviour has ransomed me


How our spirit can endure the taunting, conning and heartlessness of sickness, and the pain of losing a child is more than we can comprehend. In the midst of it all, sometimes we are so distraught and the pain seems so unbearable, that we yell at God and cry out, "Why, God why!"

Perhaps the Creator alone knows our pain. Perhaps only God both feels and understands. And He is neither passive or silent. He moves, sometimes invisibly, sometimes visibly, to embrace the lives of others with sometimes astounding clarity.

It's the smile in the picture, in spite of the pain. It's the smile in the picture, not loss but gain. The incredible smile of a child...that legacy will endure.

His smile transcends a picture and touches the hearts of many. Connor showed others how to live even when his body was dying...to enjoy the little things that come our way, to live our life day by day, to smile away...to smile away.

It's God's perspective and grace that shines through the smile of a special little child.

And like a flood His mercy reigns
Unending love, Amazing Grace.

(Connor had a strong love of God and really enjoyed hearing stories from the Bible. He was jazzed4life. To be jazzed means 'to be enlivened'. To be jazzed4life means to be joyously committed to the Lord's higher purpose for you life. Connor's legacy continues with Connor's House. The mission of Connor's House is to support children with complex health care needs, together with their families, by creating a community of support helping them to embrace each day and live life to its fullest.)

2009©Kent Robson & Deb Millard

eSentialz #3


If you would like to blog with, pray for and support Connor's parents, Scott and Deb:








Lyrics | Chris Tomlin - Amazing Grace (My Chains Are Gone) lyrics

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