Throughout life, most of us just simply don’t take into account the small stuff, it’s silly when I think of it now.
As I had previously written, this disease has allowed me the distinct privilege to remain present, I see how the small things really add up. I am humbled.
I can’t always put together in my head exactly what each event was, what small thing changed my day, but I feel it, definitely feel it.
My oldest granddaughter, I love her so much. For two years ( almost) in school, I saw her struggling, just trying to fit in.
My granddaughter is immensely beautiful. Striking. She is so funny and laughs with all her heart, she loves to laugh. She sees the wonders of the world, questions why, she really thinks about things. I see alot of my traits in her, an artist, a free thinker. Like my sister Susie, she can pull off an outfit no one else would ever dare to wear. Like my sister Laura, she is book savvy and opinionated. Like my Mum, super smart.
The other day, my daughter and I went to pick her up at school. My granddaughter said right out of the blue, “Grammie, remember last year when I was so sad in school? How I felt so out of place? Like I was always trying to fit in with that group of girls and it was so hard?”. , I said yes and let her continue. ” I don’t feel like that anymore”, she said. Point Blank. Tears welling in my eyes.
I smiled at her so Big ! I told her how proud of her I was. I told her she must be so proud of herself! I told her that seeing her understand that fitting in is not important and was it huge! That the struggle and confusion to fit can hurt so much and I was glad she no longer hurt. That my heart was full knowing she understood just how important she is to herself, to all of us.
For my granddaughter to acknowledge, at 10 yrs old, that fitting in often pulls you away from your true self; that it can dampen your path and close you up, was unbelievable.
She then said, ” People will be drawn to me and I will let them shine, cause I feel shiney now!, I am a strong girl with a big heart. I love you Grammie”.
For me to look at my granddaughter and know that she understands it is her own self and desires that matter, not what other people want you or desire you to be was so immense.
It was one moment, a triumphant moment in the life of my beautiful granddaughter, absosultely huge. Life changing and magical. Small, perhaps in the big picture, but huge in the moment. These moments add up.
Staying Present. Realizing the “small things”.
Segue….
Over the years, I have dropped out socially. I didn’t know that the growth of this disease in my body caused that.
When FB first became a thing, I tried to find as many of my school friends as possible, we all did! Totally awesome!
As the years past, I slowed down engaging with everyone. I thought it was because I started a new career path and I was just busy.
I worked and worked, and withdrew more.
I have spent years in the centre of things, socially and with photography. Photographing concerts with over 20,000>>>* people and world famous entertainment, back stage and parties and many area events, working on magazines, on line uploads and winning area award’s, news paper articles about my restaurant and rave reviews. It all just faded.
I immersed myself in one career. First time in my life. One single boring thing. A career that I worked alone everyday. I stopped connecting. It was my daughter who noticed, not me.
I’m sure she didn’t know why, neither did I, but she noticed and kept watch. My daughter asked me straight up, “Mumma, what’s wrong?” I didn’t have a clear answer, saying I’m just settling down I guess.
I honestly cry thinking of that day.
When you have EOA, it changes you and your life quietly for years. Super sneaky. Bastard.
I am the only one in my family. There is no familial line.
My great Aunt Reta, it is said she had Alzheimer’s, but no one really knows, there are no medical records. It would be reasonable to say her Alzheimer’s was not early on set, her symptoms started well after 65 yrs old.
If I had truly known what was going on, instead of putting off the drastic changes to “excuses”, would things have changed? Nope. I would have known more about the disease, true. What would it change? Nothing. Reality check. There is no cure. My brain is dying. My body will stop working cause my brain is dying.
I am hopeful that the small blurbs I send out for all of those who read this will help in some small way. It may add some insight to your loved ones new patterns. Small subtle changes.
For us living with EOAD, the changes are invisible, but we recognize that we change the way we approach daily tasks. It’s frustrating and it’s hard to explain.
Once you are diagnosed, there is an intimate and immediate acknowledgement of all those changes, now you know why you are behaving so differently, but you still can’t stop it. It’s such a wierd feeling.
Those years that have past,????? how do you recoup the loss? You can’t. You want so much to tell everyone why you faded away, but understand there is no relevance.
The feeling envelopes you and you want to scream. Tell everyone why! ………..
You lost them as much as they lost you. Life is not the same. There are no bridges to mend, the bridges faded as though they never existed. You cannot go back. Time is shorter. There is an end, more visible now. I cannot spread myself so thin to rebuild those faded bridges one by one. That’s why I started this bloggy thing. To tell you all.
I hope it helped you understand why I dropped off. Why I didn’t go to our reunion.
Why I changed. I couldn’t stop it.
If you are reading this as a carepartner, I hope it adds to your knowledge of your loved ones recent life experience.
Staying connected now has gained new importance in my life, it’s different but very meaningful to me.
It adds small bits of sunshine to my day.
I am thankful to be able to share these thoughts and insights. I am thankful you read them.
I miss my friends, I miss all of you. I’m glad we were able to reconnect in this small way. I am thankful.
I don’t fit in in many of the ways I used to, but I fit. I’ve never vied for top spot and always knew when to stop seeking those “things” that just didn’t fit me. I remained true to myself, although I did endured much heartache when I persued things I thought I wanted, I did however regained my life aknowledging my path was heading the wrong direction.
My granddaughter has found her direction. I have found my new path as well.
I’ll continue to write and share my thoughts with you even though we might not see each other in person. I hope you will keep me in your life in a small way, as I will forever keep you in mine. My heart will remember you even if my head dosent. Love you all xxoo A small gesture of connection.
Here is a fun song, dance!
Stay well my friends, Jan
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