FTD Genetic Link – Live Your Life Every Day

A friend asked me recently, “What is your greatest fear in life?” Without hesitation, I choked out, “That my children will get this crappy disease.” My body curled into a fetal position, and I cried. My husband has a rare, terminal brain disease called Frontotemporal Dementia (FTD). It can occur spontaneously or in 40% of... Continue Reading →

Sucker Punched – Getting Our Wills

Woke up in a great mood.  Easter was over, and it had been a relaxing day.  My three sons were returning to school from spring break. After some procrastination (mainly to ensure our huge house transactions were complete), I scheduled a followup appointment with our elder care attorney to finalize our wills and my Power... Continue Reading →

Let Me Feel

Let me feel.  You must.  Please do not temper my need to feel.  Sometimes it requires tears.  Many times it requires venting.  When it hurts the most, it requires writing.  It's a way to process, express, release. Feeling is not just grief.   It's guilt.  It's the guilt of being able to thrive in the midst... Continue Reading →


Warrior.  Several friends (completely independently of each other) following our story have referred to me as a warrior.  This is not how I view myself.  I’m just a wife, mom, and friend doing what is necessary to help and protect my husband and family.  Yet, after careful consideration, there may be some truth to his... Continue Reading →

Hand-Me-Down Swingset

Today, I shut the front door on our house of 14 1/2 years.  We had planned to move when the oldest two left for college.  Due to my husband's terminal illness, that timeline was pushed up by five years.  I was not ready.  There were too many planned projects incomplete.  The nurseries had not been... Continue Reading →

Sixth Birthday

Today is our youngest son, Jackson's, sixth birthday.  For years, I've considered my adult life to be "before Jackson" and "after Jackson."  His birth was a considerable landmark in my life and literally rocked my world.   I became unexpectedly pregnant at 40.  My husband and I had two sons (10 and 9) already that seemed... Continue Reading →

What Year?

Overheard a conversation between our five year old and my husband this morning.  They were talking about West Point.  My husband's most proud accomplishment (besides his kids, of course) was his acceptance and graduation from West Point.  It has been a theme in our marriage.  Our wedding took place at the Cadet Chapel in the... Continue Reading →

This Ain’t Easy, Friends

Last Saturday night our family, my mother, and some friends went to dinner at a lively fish fry restaurant.  It is notoriously loud, which works well for my husband who no longer understands that he practically yells when he talks in a social setting. I called him down several times for his behavior.  He was... Continue Reading →

A Necessary Betrayal – POA

The ultimate, yet, necessary betrayal occurred today.  My husband and I met with an elder care attorney so he could sign Power of Attorney documents officially giving me (his wife) the right (and responsibility) to make financial and medical decisions for him.  The same designee's were made 8 years ago in our original power of... Continue Reading →

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