I have been at my parent's house in North Carolina since Tuesday. I was already planning on driving down this week, but early reports on Hurricane Florence made the preparations and plans for this trip all the more urgent. My parent's house (my childhood home) is located about 135 miles from where the eye of the storm is expected to make landfall. Even this far inland, past hurricanes have caused massive amounts of damage. The power and size of this particular storm is daunting.
We have sufficient supplies. Lots of bottled water - some of it stored in the freezer to keep the freezer cold in case of power outage (thanks for that tip from my Florida friend, Clare!). We have plenty of food. Batteries. Flashlights. A quilt and tarp over my mom's piano. Coffee. Wine.
And we have just been waiting. Waiting. The storm is making a very slow approach. It changes course a bit. It seems to get weaker and then gets stronger again. We are not sure the track it will take. How could we be sure? Storms are unpredictable - especially storms as large and daunting as this one. We wait.
It hit me just a bit ago that this storm reminds me of my mom's PCA. It is daunting. It is huge. It changes course. It is unpredictable. We don't have all the information on it. We try to follow the clues for where it is going to go next, but they are not always accurate. It is unique - because she is unique. And we observe and we wait for what's next. There are some things about it which are beautiful (my mom's sweetness, her love for my dad, some of the very funny things she is saying) and there are other things about it which are monstrous (the anxiety, the affect on her independence, the loss of some of her physical functions, her confusion... and so much more).
The waiting is the hardest part. As we sit here waiting for the winds which might bring trees down and the rain which may bring flooding, we are also waiting for what symptom of PCA will present itself next. Will my mom remember who we are tomorrow morning? Will she be able to remember how to walk? Will she be able to swallow? Will she be able to laugh and talk with us? What's next?
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My family started going to Sunset Beach, North Carolina when I was about 3 years old. Sunset Beach is the southernmost beach on the North Carolina coast. When we first started our summer adventures in Sunset Beach, there were only a handful of homes there. I can remember those 1960s houses we stayed in clearly - wood panelling, no AC, fans on the ceiling. We went to Sunset Beach every year when I was growing up and we watched it grow and grow (and thankfully get AC) - some fancier homes coming in over the years - but still staying pretty true to itself. A real family beach. My husband and I even took our honeymoon there, staying in one of the older beach houses. And then we shared the tradition with our daughter. She grew up going every summer to the same beach - a family vacation with my parents and my brother and his partner.
Two years ago, we made the decision that we wouldn't be able to do the family vacation at the beach. My mom and dad were unable to walk down to the beach itself and, though they loved going there and being together as a family, it was clear to my brother and me that it was becoming much too difficult for them to make the trip. We didn't have the diagnosis of PCA yet for my mom, but we could tell things were changing. We were worried about her safety on the many stairs of the beach cottage. We were concerned about what she and my dad would do during the day while the rest of us were on the beach.
Oh, how I miss the beach. And, oh how I miss our family vacations there. I am, of course, wondering what this storm will do to our beloved Sunset Beach. I am already grieving for what I imagine will be catastrophic damage and loss. And, at the same time, as I sit here in my childhood home waiting for Hurricane Florence, I grieve for what I am slowly losing of my mom. Posterior Cortical Atrophy is a storm. A monster of a storm. It slowly erodes and destroys the beauty and the substance of my mom. It is surprising and unpredictable. It is massive and unstoppable. And, at this point, we have no power over its course.
What we do have a little control over are the moments. Some, of course, are better and easier than others. We have had both today. And, it is a blessing that the day ended with laughter and sweetness and love. I am so thankful for all of that. And I am so thankful for all those summers spent at Sunset Beach.
We have sufficient supplies. Lots of bottled water - some of it stored in the freezer to keep the freezer cold in case of power outage (thanks for that tip from my Florida friend, Clare!). We have plenty of food. Batteries. Flashlights. A quilt and tarp over my mom's piano. Coffee. Wine.
And we have just been waiting. Waiting. The storm is making a very slow approach. It changes course a bit. It seems to get weaker and then gets stronger again. We are not sure the track it will take. How could we be sure? Storms are unpredictable - especially storms as large and daunting as this one. We wait.
It hit me just a bit ago that this storm reminds me of my mom's PCA. It is daunting. It is huge. It changes course. It is unpredictable. We don't have all the information on it. We try to follow the clues for where it is going to go next, but they are not always accurate. It is unique - because she is unique. And we observe and we wait for what's next. There are some things about it which are beautiful (my mom's sweetness, her love for my dad, some of the very funny things she is saying) and there are other things about it which are monstrous (the anxiety, the affect on her independence, the loss of some of her physical functions, her confusion... and so much more).The waiting is the hardest part. As we sit here waiting for the winds which might bring trees down and the rain which may bring flooding, we are also waiting for what symptom of PCA will present itself next. Will my mom remember who we are tomorrow morning? Will she be able to remember how to walk? Will she be able to swallow? Will she be able to laugh and talk with us? What's next?
............................
My family started going to Sunset Beach, North Carolina when I was about 3 years old. Sunset Beach is the southernmost beach on the North Carolina coast. When we first started our summer adventures in Sunset Beach, there were only a handful of homes there. I can remember those 1960s houses we stayed in clearly - wood panelling, no AC, fans on the ceiling. We went to Sunset Beach every year when I was growing up and we watched it grow and grow (and thankfully get AC) - some fancier homes coming in over the years - but still staying pretty true to itself. A real family beach. My husband and I even took our honeymoon there, staying in one of the older beach houses. And then we shared the tradition with our daughter. She grew up going every summer to the same beach - a family vacation with my parents and my brother and his partner.
Two years ago, we made the decision that we wouldn't be able to do the family vacation at the beach. My mom and dad were unable to walk down to the beach itself and, though they loved going there and being together as a family, it was clear to my brother and me that it was becoming much too difficult for them to make the trip. We didn't have the diagnosis of PCA yet for my mom, but we could tell things were changing. We were worried about her safety on the many stairs of the beach cottage. We were concerned about what she and my dad would do during the day while the rest of us were on the beach.Oh, how I miss the beach. And, oh how I miss our family vacations there. I am, of course, wondering what this storm will do to our beloved Sunset Beach. I am already grieving for what I imagine will be catastrophic damage and loss. And, at the same time, as I sit here in my childhood home waiting for Hurricane Florence, I grieve for what I am slowly losing of my mom. Posterior Cortical Atrophy is a storm. A monster of a storm. It slowly erodes and destroys the beauty and the substance of my mom. It is surprising and unpredictable. It is massive and unstoppable. And, at this point, we have no power over its course.
What we do have a little control over are the moments. Some, of course, are better and easier than others. We have had both today. And, it is a blessing that the day ended with laughter and sweetness and love. I am so thankful for all of that. And I am so thankful for all those summers spent at Sunset Beach.
I have a similar story and path as you (although different dx) as you know. So this one brings tears as it really has been on my mind too lately. I grew up going to New Smyrna Beach, FL since I was about 12 every summer with my family as my uncle has a beach house there. It seems like that is something that, like the meringue and the Thanksgiving Day cooking, will and should never end. Then it does. My mother never made meringues. She never cooked. She actually did play piano but that didn't really continue into her middle years too much (although she did manage to teach us some). But we loved the beach. And honestly, the beach was a place where I could really have my mom to play and have fun with. So, this one is truly appreciated. Just this last weekend we went to NSB for a long weekend trip with my immediate family and some friends. My mom cannot go anymore of course given her illness. I brought old photos along to share with friends of our time there. It is the same home we have always gone to. So memories are all over the place. The thing is though, they are all good ones (except the one time I was bit by a jellyfish). I try to focus on that and enjoy those memories. And I truly do. Love you!
ReplyDeleteThank you both for sharing these childhood vacation memories along with the difficult and tumultuous storms that life brings. I love you both dearly.
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