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The Storms of Life
As we prepared for Hurricane Sandy as best we could on Monday morning, we stopped by my grandparents house to tie up their barbecue and a few other things. Wind precautions. We stayed for about an...
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Four hours in the gas line
I left my house at 8:25 this morning. Admittedly it was later than I had wanted, but I struggle to clear my head in the mornings these days. I drove for a bit, to all the local gas stations. I even...
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“Keep Swimming!”
There are people you meet in your life – and even some you don’t actually meet… that make a world of difference for you. I saw this today and it made me think of some of the people I have met over the...
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Why worry?
That feeling. The one where the doors are about to close, and you have to make a decision. Are you going to fight your way out… or give in and let them trap you? The pile of bills and papers on my...
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Thankful for… that first piece of pie!
I was going to avoid boring everyone with the same drivel that has been written over and over today, but I couldn’t resist. It’s hard not to think about what you are thankful for on a day earmarked...
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There are just no words
Tonight it’s not about us. No matter how hard I try. No matter how much I trust. No matter how much I pray. There will be some things I will never understand. Ever. Today a generally healthy...
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“Count Your Many Blessings…”
“Count your many blessings, count them one by one. Count your many blessings see what God has done…” The song has been stuck in my head all afternoon. I remember as a youth singing the song in...
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Give Thanks…
I like fall. I prefer the optimism and new beginnings that come with spring, but I do love fall. I like the sweatshirt jacket weather, and the pumpkins and apples, and the beautiful fall leaves. I...
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“There’s a bit of magic in everything, and then some loss to even things out…”
As I walked away from the pizza place, holding my girl’s hand, with tears streaming freely down my face the song “Magic and Loss” by Lou Reed crept out of my subconscious and began playing with...
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Wrong list…corrected and redirected!
It wasn’t too long ago in conversation with my husband that we started to talk about all the things that have gone on in our lives in the last 2+ years. The life changing diagnoses of Meghan and I and...
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All Dogs go to Heaven…
Although there is some debate on that, I stand with Billy Graham. We lost our Allie Girl today. And just when I thought there couldn’t be anymore sadness, our hearts are broken in half. Allie found...
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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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“I Am From”– Guest Blogger Meghan
I Am From by Meghan I am from Love I am from mutts barking at night I am from swims in the backyard pool I am from hospitals and procedures I am from suffering I am from anticipation of how my life...
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Mortality
The awareness that one day we’re not going to walk this earth anymore. Not exactly dinner conversation, but, for lack of a more gentle way to say it, mortality is everyone’s reality. We face this...
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Appreciating the Rainbow AND the Storm
Let’s be real. Plain. Honest. Real. Sometimes we all want to throw our hands up. Sometimes we want to quit. Sometimes we want to hide in the closet or under the table alone. For a long time....
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“She’s so unusual…” and Other Ironies
This is quite a garble of thoughts… good luck! ** This blog was written over 2 days. The BLUE type was written today, Sunday July 19th, and the BLACK type is from Saturday, July 18th.** I’ve been...
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Invisible Illness – Stuck in the Middle with You
I don’t actually fit the “stereotype” of a middle child, as I was a younger sibling to my sister, (three years older) for 15 years, before my little sister and brother came along a few months apart. I...
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And then THIS happened…
And in the middle of the summer that wasn’t, Meghan’s drama teacher was out doing her thing, inspiring my daughter to step out of her comfort zone and reach new heights. I LOVE the drama teacher. And...
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“There’s nothing wrong with THAT girl…”
To the Young Couple on the Bus this Morning, You should know that I heard you. I heard what you said as you glared at my daughter. I saw you shake your heads in disgust and say, “There’s nothing...
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Pause…
Sometimes we need to pause. We pause only briefly, with hope of it lasting the whole week, and the reality that there will be interruptions along the way. We pause, knowing that pain is ever-present,...
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