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Triage- A Way of Life
Triage. The word hangs with me like the memories of countless Emergency Room visits. Triage. Take care of the most serious first. It’s the reason we might wait hours for stitches, and barely a moment...
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Dear Mom…. Mother’s Day 2018
Dear Mom, You’re small but mighty. You’re a force to be reckoned with. You are a role model, and an inspiration. You are a survivor. You never give up. You were my very first hero. I’ve learned a...
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Dear Meghan… Mother’s Day 2018
Dear Meghan, Almost 15 years ago you entered this world kicking and screaming. You scared the heart out of us, the doctors, and the nurses. The NICU nurses called you “Miss Attitude”. Even in...
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When you reach the end of your rope…
There is no other choice really. We must hang on. We must always hang on. So often this is easier said than done. Last weekend I stayed up all night Saturday digging out from under a pile of...
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Double Edged Sword
I remember as a young girl, and even a teenager, having the phone pretty much attached to my ear all the time. I remember being so excited when we got a cord long enough for me to bring the phone into...
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Jeans for Rare Genes 4
As we plan our next fundraiser, we are doing things a little differently. We are shipping orders for T-shirts within the US. The shirt looks like this: If interested- shirts are $20 plus shipping....
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Tragedy Surrounded by Love
My cousin Kim stood, graveside, holding 2 flowers over the 7 month baby bump under her black dress. Two roses. One was red and the other was pink. One was for her, and the other for baby Mackenzie....
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No Excuses. No Apologies.
Recently I asked that Meghan’s “Present Levels of Performance” on her IEP be updated. She no longer receives many services, but I find great value in keeping this section current. There is a great...
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(Living) “In Prep for the Climb”– PTEN Awareness Day 10/23/18
I’m aware of Breast Cancer. As a survivor now of 6 years and the daughter of a 21 year survivor, I am aware as I dry from my shower facing my mastectomy scars every morning, that breast cancer is...
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It’s possible…
It is possible to have conflicting emotions and have them all be true. It is possible to feel so tired you wonder how you will function, and simultaneously grateful for the very things that made you...
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“I am the Lorax, I speak for the trees.”
The call came to my cell phone on a Friday afternoon a few weeks ago. It took me a few minutes to process that Sharon from the Teddy Atlas Foundation was telling me Meghan had been selected to receive...
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Experience Dictates Your Reality
I usually have a plan when I sit down to write. Typically there is a topic, or a concept in my mind or on my heart. But, as is clearly evident by the two months of silence on this page, I’m...
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Rare Lives, Rare Disease Day, and So Much More to Come
Thursday, February 28th, 2019 is World Rare Disease Day. There was a point close to forever ago when that meant nothing to me. I had never even heard of it. Our initial Cowden’s Syndrome diagnoses...
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It’s This Day to Day Living…
And that might be an accurate description of my current assessment of living with Cowden’s Syndrome. It’s so hard to put into words. Those who don’t understand are likely to think I’m insane. When...
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Normal People Stuff
Two weeks of as much rest as I can possibly stand. The trouble with having a rare disease, as I’ve said so many times before, is that you ALSO have real life. You ALSO have “normal people stuff.”...
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The Carousel
Life is very much like a carousel… you must hold on tightly. It will not stop until it is over… I always heard about the body changing every seven years. I never gave it much thought.A quick Google...
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A Drop in the Bucket…
As of today, my records show 78 appointments between the two of us since January 1st. That’s 148 days. More than one every other day. 78 scheduled appointments. Some appointments are close and some...
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Behind the Scenes…
We don’t post the awful pictures. We leave out the ones where we look less than our best. Social media allows us to live in the delusion that everyone’s life is “perfect.” I’ll be the first to admit...
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Difficult To Work With
I am so tired of fighting. All the time. My Grandfather told me many years ago that I was “difficult to work with.” He said it with love. I don’t remember the exact context. I do remember it was...
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Rare -ER? More Rare? Where to Begin?
A new diagnosis came our way this week. On top of the existing one. I have wavered between frustration and relief. I have felt some questions answered and developed a lot of new ones. My girl got...
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