~Written by Christina (Hall) Valencia
It has been almost 2 years since Mary (Mom) died, 18 months since Margaret (Nanny) has died and almost a year since our last post. Our family is experiencing what I referred to in previous posts as the quiet before the storm, except that it is now a quiet after the storm.
While the quiet after the storm has allowed us to live a little without Frontotemporal Dementia (FTD) on our brain at every turn; it has not taken the want to make a phone call or share a story away.
It is giving us time to prepare for the next wave of storms. But what does that mean?
To me it means, making hard decisions about what is best for my family and me. I have made a decision that at age 40, I will get tested for the gene. At 40, my girls (now 3 and 4) will be 11 and 12, old enough in my mind to understand and be able to formulate questions.
I will have a plan for end of life decisions.
This quiet has also allowed me to enjoy my kids without the guilt that I felt initially for even possibly having the DNA that could negatively impact their futures. Although they cannot remember it, they re-share the stories that I have told them. Emma will remind me how Grandma Hall would try to catch her before she fell as Emma was learning how to walk, and Lil will tell me how Grandma Hall used to love to hold her. Both true stories created by the storm. These are good memories.
The quiet has brought Mary’s five children together, with their spouses, children, father and Mary’s father for a grand vacation this past August at one of Mary’s favorite places, the Jersey Shore (well not the Jersey Shore, but a place very close to it). At the shore we were able to have the kids who live states apart forge irreplaceable memories. My girls will never forget how cousin Henry (age 2) caught a fish with his bare hands, how he touched a dead puffer fish that had washed ashore. How Aunt Meggie, really had the baby that caused her to waddle the 1/3 of a mile to the beach, holding a row of hands, 8 in all, trying not to get caught on the street sign poles....How one day we watched as hundreds of dolphins migrated northward.
Each of those memories and appreciation for what we have came to fruition because of our storm of dementia and the quiet that followed.
The challenge of the quiet, is the unknown longevity of it. Hopefully it will last, but as it does, it is our responsibility to keep the energy of our initial drive to help raise money to cure FTD and raise FTD awareness alive.
This blog is meant to inspire and remember, and I challenge those who read it or have read it to share a short, long or short, about themselves or loved ones, either before, during or after their own experiences with dementia. Our family will be hosting the second annual Mary Hall Benefit for Dementia Research this summer.
Please stay tuned for more information.
~In Memory of Jack Flanagan, Father, Grandfather and friend to everyone he ever encountered. A man whose love kept him by his wife's side for 67 years, even as dementia took her away~