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A Letter To My Children As We Enter A New Decade

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Dear Becca and Ian zt"l,
As we leave one decade and enter into the next, I have so much to share with both of you. How proud we are of you, all of your accomplishments with all the highs, lows, and challenges you each faced together and individually.
The 2010's...what a decade it has been. Full of unknowns. Ups and downs. Highs and lows. Joys and sorrows. Cries and laughs. As the days turned to weeks, weeks turned to months and months turned into each new year; we had no idea what lied in front of us. No matter where the decade took us, no matter what was in front of us...you both looked each day, week, month and year in the "eye" and took them on. All of us together had no idea where we were going but we were going to find out and leave no stone unturned. The decade started off searching for answers, not knowing the answers would forever change us.

So carefree. So full of life. Both of you were.  
A mutation of the VRK1 gene. Pontocerebellar Hypoplasia Type 1A. Po…

How the fear of dying taught me how to live

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It started with a headache. A headache that lasted 4 days.

A headache that no medication, coffee, hot shower, cold shower, nor amount of sleep could subdue. I called my doctor.

"You've had headaches before. This is no cause for concern," he said.

And then, in the middle of the night...it popped.

As sudden as the headache had come, it was gone. I felt or heard a "pop" in my head that woke me from my sleep, followed by a warm sensation rushing through my brain. A friend had recently lost her mother to a brain aneurysm. I thought, "This is it," as I shook my husband awake and frantically called 911.

I sat on the carpet in our hallway, rocking back and forth while clutching my knees as I waiting for the ambulance. I distantly heard the dispatcher's voice in my ear as I asked my husband to turn on his video camera.

I heard my daughter crying in her crib as I repeated over and over, "She will never remember me," and began a…