Today is Rare Disease Day.  Today I start my new writing endeavor: Sharing a glimpse into our world of RARE + HOPE.   I often say I feel very caught between two worlds.  Imagine a body of water between two very large sections of land. On my right is a path well-traveled where people live life, enjoy quiet […]

 Matthew 7:7-8  “Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened.”  Against all odds and uncertainties, HOPE is in our everyday lives.  HOPE flourishes […]

This Will Wednesday, I thought I would share an experience we had with Will last night and this afternoon. As you all are aware, Will is blind. He started losing his vision at 5.5 years old, and over the last 11 years has lost most of his eyesight.

I wish he could see. I wish he could see my love for him. I wish he could see our eyes light up when he speaks. I wish he could see my smile, showing happy I am that he is next to me. I wish he could see, our eyes are the same color green. I wish he could see […]

Rare meaning not occurring very often; not found in large numbers; seldom found; Or the definition I prefer: “Distinctive, unusually good, remarkable or extreme of its kind.”On this day, a day dedicated to those living and battling diseases that are rare, I prefer not to focus on the fatal condition that has plagued Will’s childhood and […]

This view… like a metaphor for my life. As I sit on this beautiful beach at 43 years and 2 days, I look out at all its beauty — the gorgeous waves, crystal blue water, and white sand. I see the red flag stating danger, but you look beyond it.. the view is so much […]

Thank you for following my blog.  It’s super slim right now but I am constantly writing content…just a little timid about putting it out there.  May and June are emotional months for me, so my goal every year at this time is focus light and life.  Will was diagnosed in June 2009, which was the […]

24 eyes staring back at me.  Looks of worry, fear, piercing eyes of despair. I recognize those eyes, those feelings. I see those same eyes looking back at me in the mirror; looking back at me though my husband’s eyes and my children’s sometimes too. The look knocks the wind out of me.  You see, […]

  Just keep walking.  “Thank you Mommy” …if I could bottle that voice and those words of gratitude when they come  from the unlikeliest of people…my Will. Will who has so much to complain about or be discouraged with life… could be the most grateful person I know.  Will has a sheer appreciation for the […]

A simple box wrapped  in gold and white striped Christmas paper with a christmas tree tag reading: To:  HOPE  From: Steele  After all the presents were open Christmas morning, I came across the lone gift under our tree.   Steele, my 12 year old son, picked it up and handed it to me.  He said, […]

I lost my tears….somewhere along the way; my tears disappeared. I have had dry, tearless eyes for the last several years. I know it sounds crazy, how does one lose their tears? Is it possible to cry so many tears, that your body becomes unable to cry? Or after crying so many tears, does your […]

Tonight Will was a Baseball player. That’s all he wants to be; like his cousin Bryson Kemp who plays for Klein Oak. Will was a Bat boy for The Varsity Team and threw out the first pitch. He collected bats, hung out with the boys in the dugout and was escorted by 2 adorable diamond […]

Every once in a while, the heaviness of the journey we are on hits us to the core. A slurred word, a darkness in Will’s beautiful bright green but blind eyes, a shake in his hand, his bent legs; when he speaks of growing older, driving a car when he turns 16, playing baseball like […]

Batten disease is a fatal, inherited disorder of the nervous system that typically begins in childhood. Early symptoms of this disorder usually appear between the ages of 5 and 10 years, when parents or physicians may notice a previously normal child has begun to develop vision problems or seizures. In some cases the early signs […]