Post 2: A glimpse from the Past: “A Journal entry from my (Christina) freshman women’s writing class 7 November 2001:

“Perception of Mom”  re-titled  “Hind-sight 20/20”  (written 7 Nov 2001)

Mom. Such a tiny word for such a big person, job. My mother gave up her job at  twenty-nine to raise me and my three sisters and brother.  She works as a nurse at an elementary school and loves it. She loves knowing that people need and come to her for help. 

Sometimes I think that she does not feel wanted or needed in my house, maybe it’s that we do not understand her, and I sometimes certainly do not. But that does not mean that I don’t care. But how can I make it evident? Words and actions make such a difference, I know that a smile and a telephone call for no reason mean more that a letter of a thousand meaningless words. I still want to say something. She is so sad lately and I worry that I will lose her before it is her time. That scares me so much.

Making phone calls and writing letters, though she is a matter of away compared to so many other moms. So many people say that their moms’ are their best friends, three sisters are enough. No, I need a mom. Someone to tell me that I am being stupid or ridiculous, and someone to be proud of me and brag. Not too many people do that for me anymore. Though she may not always “get it;” Mom pretends to understand everything I say. She makes me feel special.

She is so important that I think about her every day, and smile when I see something that she would do, or see someone with the same hair. I love to sit on her lap and giver her hugs for no reason. That’s what moms are for and what I want to be.

I tell mom every day that I love her. No need to, she knows it, but someone has to.

There should never be a day that is not called mother’s day, they deserve that much, don’t you think? So I just wanted to say thanks mom, maybe one day I will give this to you.  You don’t say much either, but you always seem to say just enough. I can feel that you are here, even though you are not. I want it to be like that always.

Remember when we used to fight. I don’t even remember why. I think you made me mad a lot and I made you mad too. But that’s all over now. I don’t to know else to say but that you are one of those amazing women and do something for yourself one. You have to because when you show us that you can do it, we will too, everything good has something bad, but at some point the bad* will outweigh the good and then you know that it is time. Don’t feel sorry or bad because you have given us so much, and we or you will never take it back.

……A follow-up Six years later - 3/15/2013……

Well, I’m a mom now. I have two daughters, 21 months and almost three. Mom (Mary) was there to hold Emmagene (my oldest) a month after she was born in late April 2010. At that time, Mom’s understanding and use of communication was significantly decreased; she had a keen sense of perception and awareness of others. She couldn’t travel alone, Heidi came out with her.  I remember feeling a sense of absolute sadness, because I knew that this moment would only exist for my daughter (she was the first grandchild). Heidi, who was still in school at the time, told me of she and mom’s shopping adventures, buying baby clothes and toys. Mom would pick out just about anything.  By this stage, she understood they were shopping- that it involved baby clothes, but that’s where it ended.  She could not understand anymore sizes, or look at two shirts and make a decision on what she liked better, or that you cant just pick up tiny piece of clothing in the store in the store.  She wanted to help so desperately. 

“Here, and here, or here.”  She would say as she took item after item off the racks and handed them to Heidi.  Heidi would smile, take them from mom, keep a few and discreetly put the excess back when Mom was looking the other way. 

I can still hear my mom’s voice as she held my tiny baby, counting those fingers and toes, one two three four five, then she would look at me and smile as if to say…they’re all here.  Mom couldn’t find many words but love, numbers and a million gentle kisses on a tiny face. Mom reached her arms out for Emmagene at every chance, wandered by Emmagene’s crib just to take a peek at HER grandbaby,  and adjusted and readjusted the swaddle. 

I remember my husband being very cautious when my mother was with Emma, he watched my mother like I watch my children now at the park. I remember her reacting as if she knew that he didn't quite trust her and I could almost sense (or decided) that she didn't understand why he wouldn't trust her.  His feelings were sound. She was having difficulty with remembering to wash her hands, cover her mouth, all of those interpersonal skills that were learned in grade school were slowly slipping away. I remember wanting her to be the person she used to be, my heart aching for Mom—even though she was right in front of me—but knowing  these were now the moments we had to hold on to and cherish.

“One, two, three, four, five….” Mom is counting Emmagene’s toes again and smiling with pride.  I will treasure these moments forever, because eventually we will look back on these days—the early days of this dreadful disease, and realize they were the “good ones”.   
During my mom’s visit, I could tell that she wanted to help, to be a part of the process. It hurt inside because I needed her, but roles had already begun to reverse and she needed us to take care of her. As the years have passed, I have wanted to pick up the phone a million times and share my children’s milestones  and the trials of parenting, first words (always “dog”), first steps, blown out diapers, being pregnant again (and so soon).

Her visit to see Emmagene was the beginning of an understanding for me that my mom would only be a by-stander for most of my children’s lives, not by choice, but because a terrible disease was taking her from us. There is not a doubt in my mind that my mom would have experienced each of those milestones, if there were a means of treating and preventing this disease.  My mother’s relationships with my children and me as a mother are not at all what I had anticipated 10 years ago. I can only hope that my relationships with my daughters are also not stripped and shortened by FTD. The only hope is a cure, and there is hope for a cure but cures need research and research needs money. Every penny counts. Thank you!

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