To My Daughter’s Team of Medical “Professionals…”

end of my rope

I went to college, and graduate school, and took 30 credits above my Master’s Degree in Education.  I earned a job as an elementary school teacher, in the school I attended as a child.  And, after 18 years on the … Continue reading

Flip It…

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Some time in the middle of this winter that lasted forever, I started to notice people complaining about a sidewalk near my school that was often left icy and uncleared.  The grumbling that would take place was sometimes quite extensive, … Continue reading

Here Comes the Sun…


It’s not unusual at all that a classic Beatles song would show up on a classic rock station in the car.  And I could write it off as mere coincidence.  But, there was my Dad this afternoon.  In the car, … Continue reading

Dear Cowden’s Syndrome,


I’ve wanted to talk to you ever since you rudely introduced yourself to my family in 2011.  Actually it wasn’t even a proper introduction.  It was more like, “I’m here.  I’m staying.  What are you going to do about it?” … Continue reading

“Cancerversary- a celebration of life BEYOND cancer”


To some people the idea of celebrating a “cancerversary,” or the anniversary of the day you became a “survivor,” is silly.  But, to someone who is date obsessed, it makes sense to celebrate the victory.  It’s not about remembering the … Continue reading

Three Year Old Memories


It was about 4 in the morning on March 5, 2012.  I was laying on the bathroom floor, vomiting the contents of my “nothing to eat or drink after midnight” stomach.  I was dizzy, lightheaded and weak.  The task looming … Continue reading

The Heart of a Champion – an open letter to my daughter


Dear Meghan, Today Daddy and I watched you swim in the Silver Championship meet.  It was your first qualifying meet, and it won’t be your last.  We find it amazing that you qualified, and for the 100 butterfly no less, … Continue reading

World Rare Disease Day – Advocacy and Awareness


World Rare Disease Day is February 28th.  Although the actual day is February 29th (the rarest day…) It is a day of raising awareness across the globe about the 7,000 rare diseases that plague 1 in 10 people. Our fundraiser … Continue reading

The Speed of Life

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I am always amazed by the speed of life. I don’t know why at this point I’m not used to it yet.  But, as I sit here with my leg elevated recovering from a vein stripping on Thursday, I find … Continue reading

Jeans for Rare Genes – Local News Coverage

So despite a few tiny errors, we were really touched by this!