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Reflections
Reflections. One of those multiple meaning words that seems to get tossed around a lot this time of year. Reflections for me are necessary as a part of who I am. As the new year approaches, I find...
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Milestones
When I started this blog just about two and a half years ago, it was to serve as therapy for me. It took a while before I even started linking my posts to facebook. I didn’t pay much attention to the...
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Winning
Winning. It feels good. And it’s not about being first. And it’s not always about being “the best.” Sometimes winning can be as simple as not losing! Every day we wake up and prepare for battle....
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“The Few, The Proud…”
I have a pretty big family. And among that family I boast countless uncles, great uncles, and aunts and cousins too. But, I have uncles I’ve never met. They are brothers to my father who died just...
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Good to Have Goals…
And every time I sit down to write I get distracted. Forgive my attention issues. There seems to be too much to attend to at once – and I have issues. I didn’t want to go today. I didn’t. But I had...
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The Speed of Life
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 it hard to...
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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...
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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...
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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....
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“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...
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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...
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Flip It…
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...
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To My Daughter’s Team of Medical “Professionals…”
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...
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“Lucky” Number 13
People count all sorts of things. Among the things we count are surgeries. Although the most recent ones have been predominantly knee related – 2011, 2012, 2012, 2013, 2014, 2015… we don’t forget...
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Reflections on Mother’s Day – from a “Rare Disease” perspective
Dates, numbers, anniversaries, addresses, and all sorts of other numbers crowd my brain. I’ve said this before, and I will say again, it is a blessing and a curse. It is a good thing to celebrate...
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Now we’re back where we started…
“Do It Again” (The Kinks) “Standing in the middle of nowhere, Wondering how to begin. Lost between tomorrow and yesterday, Between now and then.And now we’re back where we started, Here we go round...
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“Take pride in your pain…”
My daughter is a reader. She eats books up. One after another. I have pleaded with her to use the kindle, just to avoid the sheer volume of books in the house. I lack the responsibility to be a...
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She didn’t get THAT from me!
And in her never-ending quest to keep Cowden’s Syndrome firmly in its place, my girl blew me away yet again. I am just along for the ride. She looks like me. She and I share a broken PTEN gene, and...
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#beatingcowdens #collegebound
No, she’s not going yet. And actually even the thought that she will truly be college bound only 6 summers from now makes me a bit queasy. But, there will be time to deal with that later, and...
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Today I Cried
I cried today. A lot. I hate it when that happens. It wasn’t the loud sobbing kind of crying. It was the kind where the tears just run down your cheeks. And if they’ve been held in there a long time,...
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