Today, Claudia and I had the chance to reconnect with a woman who we heard speak at the Geneva Autism Symposium in Toronto last year. The woman is a reknowned educational specialist who advocates for inclusive practices for children on the Autism Spectrum. While we were at her last speaking engagement in Toronto, she made the comment, “Don’t quit 5 minutes before the miracle happens.” You all know the rest of that story. Those words became our family mantra…our life support…following the setback mom had last December 22nd. Those words have been shared with literall
hundreds of people around us both on T-Shirts we had made, as well as on wristbands and in our blog. Today, when we met this magnificent educator/consultant again, we had the chance to share our story with her—and to give her one of the wristbands. Each time we get up to face a new day, share the best of yourself with the people around you each day. We never know how our lives may touch someone else’s. today was a special day for “the sisters” as she referred to us (as an aside---great minds think alike I guess---Claudia and I met at the conference wearing almost the exact same outfit!!! Hahhahaha! An actual “E-True Story” Red Carpet Disaster!! Hahahah!).
One day last week or the week before, when John was with mom, John asked mom if she wanted to write a letter. He gave her some paper and a pencil and she wrote what follows. John hung it in her room. For some reason, we keep forgetting to put it in the blog. So, on that note, here is mom’s letter:
“Dear Family,
Thank you for all you do for me. I am so lucky to have a loving family. I love you all so much. I can’t wait to come home. I hope it is real soon. Love Dotty, Mummy, Nonny, Mom”
When I arrived to see mom this afternoon, she was sitting beside dad reading the newspaper. She was engrossed in it. I showed her pictures I took of an eagle I saw when I went upstate yesterday to deliver supplies to the villages who suffered damage during Hurricane Irene in August. I also showed her pictures of some of the damage to areas I hadn’t seen before yesterday as well. she commented and looked at them all with interest. Mom told me to submit the eagle pictures to a wildlife magazine.
I asked mom if she wrote in her journal today and she said no and asked for it. She set about recording what she could remember about the events of the day. Mom wrote: “Kathy and Claudia returnted from upstate and we sawe the divastation that was left after the hurricane in august. Claudia and Kathy came back and we saw the devastation after we had our hurricane in august.” I then verbally prompted her by asking, “Who came to wake you up this morning?” Mom remembered!!!! She said, “Who woke me up this morning? Jean.” She couldn’t remember who else came so dad asked, “Who took you outside?” Then mom said, “Umm…who took me outside? Maybe Jean. No. Anthony.” Mom wrote: “Jean woke me up this morning. Anthony came after Jean left. He took me for a walk around the building.” I asked mom, “Who came after Anthony?” “Nobody,” was Mom’s reply. Dad said, “OK, I’m nobody? Then I’m going to go home” and we laughed. Mom wrote: “Jean came then.” I asked mom if she went to physical therapy and she looked at dad to ask him for the answer. I told her not to look at dad, to look at me and just think about it. She yelled at me, “I can look at dad if I want to!!!” Mom wrote: “I weit to pyisical therapy. I stood up.” I asked her what she did there today and she said, “Oh the usual.” Mom wrote: “I read the newspaper. And I read all about”
Mom said to tell all of you: “I can’t believe all the time you all spent with me. Especially, Kathy, Claudia, Terry, Anthony, John, Con and all the kids. I can’t believe the time they all took to be with me, Anthony, Lenny, the girls, Jean (dad) and just everybody. It meant a lot to me. Everybody took time in the morning at breakfast, and they come to breakfast (Claudia, Kathy, Jean). Even though all the kids are busy in school, they still come to see me. I never had one day when my husband or children or grandchildren didn’t come see me. I am truly blessed to have all of my family in my life and all they do for me” (she then told me to name each one of us for her in the blog!).
I have thought about the use of writing as a tool to possibly help mom recover some of her short term memory. Mom seems to sometimes fall into a pattern of: “WRITE. READ. EMOTE/FEEL.” She thinks about what she wants to say, writes it, pauses to read what she wrote, and then she emotes---feels all the emotion behind what she has written. Then she repeats the process again and again---often by rereading the same line or two over and over…reading and emoting and calming down…reading, emoting, calming down. As mom rereads what she has written, she seems to relive the moment she is writing about and to feel exactly what she felt as when she was originally writing it. There is such power in the written word and in putting something down in writing, especially in reference to a personal level. When we write about our feelings to another person, there is often confusion in the message because the 2 people (sender and receiver) are bringing all their own emotions to the message. The writer’s intended message is often misconstrued by the reader’s interpretation. However, on a personal level, there is so much power in our written emotions. Writing becomes a cathartic (healing) experience for the writer. Hopefully, mom’s journaling will serve as a place for her to restore her short term memory as well as to feel all her emotions in a healing kind of way.
"Write this down on a scroll as a permanent reminder..." Exodus 17:4
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