A long, hard road . . .
It is easy to wallow in the negative emotions. There are many. It happens often. But, in peeling back the layers, there are many blessings as well. We've been on a journey of self-discovery. One that has reshaped our family's priorities. One that has bonded us through grief. Finding and embracing the blessings have pulled us through the firestorm of the first two years post-diagnosis.
My understanding of love has changed in nineteen years. It's no longer the simple shared emotion of young people with a life full of promise, the wonder at starting a family.
Sixteen years ago today, my beautiful first-born son came into the world. He was an enormous 9 lbs 1 oz baby. He never seemed fragile almost toddler like from the beginning. At only a day old, he found a way to un-swaddle himself and kick the covers right off. He's never liked being hot running... Continue Reading →
Yesterday was another trip to Vanderbilt Hospital in Nashville. It's a two hour drive on a good day. It's two hours to reflect on the limited conversational abilities of my husband. It's two hours listening to comments about the passing billboards and buildings that have no real relevance to our lives. Yesterday, the trip was... Continue Reading →
I'm asked all the time about how my husband is doing. He has a degenerative frontal lobe disease called FTD (Frontotemporal Dementia). As suggested by someone on a FTD forum for spouses, my response will now be, "Would you like the 5 second or 5 minute answer?" Either response is absolutely fine. I have no... Continue Reading →
Standing on the wooden platform of the Chicago "L," I wondered if I were strong enough to face the AFTD Annual Conference. AFTD is the non-profit for Frontal Temporal Degenerative diseases. Over 350 people from 32 states and multiple countries were in attendance at the conference. One thread connected us all - FTD.
After three days in Delray Beach at my father’s house for spring break, our family finally made our way to the local public beach. It was a sunny but very windy day. My middle son, Matthew, noted the wooden sign with the lifeguard flag colors as we strolled down the boardwalk towards the sand. Red... Continue Reading →
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 →
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. 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 →
Our Frontotemporal Dementia Journey 