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AHCA, High Risk Pools, and My Child’s Future
I am angry. I am hurt. I am worried. I have stayed out of politics through the entire tumultuous 2016. I have serious issues with many politicians. I am not here to talk about them directly. I am...
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It’s Not Over Yet…
Tonight my search for perspective was harder than it normally is. Tonight I needed a glass (or two) of wine, some time alone in my office, and plenty of music. And as the lyrics roll through my head in...
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Middle School is Hard
Middle School is hard. If you’ve ever had a middle school student in your world, you know what I mean. Like everything in life, the feelings are different for each of them, but if you’ve recently had...
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A Perfect Storm
Sitting, sopping wet, in the middle of the ocean, in your small row boat. Your feet are wet. Your fingers are wrinkled. You are cold, exhausted, and often frightened. There is no access to the...
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“… Turn on the Light!” -Albus Dumbledore (J.K. Rowling)
Last week my daughter pulled on a shirt before we headed out to the doctor for the umpteenth time this summer. I didn’t think much of it at first. I was grateful she was dressed and pulled together,...
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The Comeback…
“…There is no mountain you can’t face There is no giant you can’t take All of your tears were not a waste You’re one step away…” Danny Gokey We listen to a good deal of Contemporary Christian music....
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To My Girl On Her Birthday
Sometimes you’re on top of the world. Stay HUMBLE. Sometimes you’ve hit a low. Stay HOPEFUL. The Lokai bracelet nailed it with real world advice. Meghan as you turn 14, there is little more I need...
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delete
Don’t you sometimes just want to hit the delete button? We were going through vacation photos and I was struck by how easy it was to eliminate images that we found unflattering. We were able to simply...
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Looking for Clarity in Chaos
I am rarely at a loss for words. Yet, today I am struggling. This was not an easy week here, for reasons that are valid and important. Yet, they will keep. Sometimes it’s not about Cowden’s...
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Change- The Only Constant
Wild. These last few weeks have been just that. I’m always amazed at exactly how much can fit into hours or days. Sometimes I try to recap a day, and find myself shaking my head. Meghan is in high...
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Invisible Illness – Sometimes We ALL Need Help
The day starts with me laying in my bed, trying to wrap my mind around the fact that it is time to face another day. I lay there a few moments. My heart rate begins to rise. I feel the familiar ache...
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You Might Have Cowden’s Syndrome if…
You might have Cowden’s Syndrome (or insert your chronic/rare illness here) if… I spent some time alone last night. That sounded a great deal nicer than it actually was. There was no manicure, no spa,...
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More questions than answers…
I haven’t written regularly and it is wearing on me. I keep putting things in front, waiting to be ready, to be finished so I can focus. Except life is really busy. And it keeps getting busier....
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Sometimes GOOD Things Do Happen…
Sometimes really GOOD things happen. And when they do it is just such a jubilant feeling of gratitude and relief. In October I wrote at length about Meghan’s struggle with PTSD and anxiety. I wrote...
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Ice Cream for Dinner
You have to give the body what it needs. Tonight mine needs ice cream. With hot fudge. Normally I’m a protein shake, green tea kind of gal. But I don’t really believe in drawing hard lines...
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Non maleficence- Meghan’s monologue
Meghan recently had a drama assignment where she had to write a monologue on non-violence. The teacher appreciated her perspective, and I think it speaks to the long term effects of rare disease, and...
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Time flies…
February Break. A time to refresh and renew. Mostly. Except here. Here it’s a time to go as hard and fast as possible to get as many things done as possible. Some of those things are Cowden’s...
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Rare Disease Day 2018
I took today off from work. Sadly, it was not to enjoy the almost 60 degree February day. Today was doctor day. And as I traveled two hours for the 17 mile trip into Manhattan this morning, I had...
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Superfluous Tissue
6 years ago I was trembling with fear. I sat up most of the night. I paced the floors. I was scared out of my mind. No stranger to surgery, this one was way different. Sometimes I actually forget...
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Just Do Your Job
I guess as I think about the last few weeks, so often the thought comes to mind that if people would just do their job, thoroughly and with accuracy and pride, many problems could be avoided. This...
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