this is what glioblastoma looks like

This is what glioblastoma looks like:

this is good i can talk      tvo dad vpattcccccicccceerybodyi lbgoveyouthemvvvvvvvvvvbostest

iloveyou xthe  mbvvbovvvvvvvvvvvvvvvvvvv

i love you the mostest

It took my mom ten minutes to type that. I had to get the computer for her, as she is bed-bound. I plugged it in for her, opened up this blog to find a scratchpad, made the font size as large as possible, got her glasses, retaught her where the backspace, enter key, and letter “L” were, and waited. She used the pointer finger of her left hand, because her right, dominant side no longer works. She hit lots of wrong keys. She got frustrated, and she didn’t stop. I knew what she was saying, but she wanted it to be perfect. She was persistent.

She’s found workarounds every step of the way. We found a new way to communicate. She taught me the ASL alphabet when I was little which became our secret language as she lost her voice. She can hear, only if you speak slowly, loudly, and make the letters exaggerated with your lips. You must face her, because she has learned to lip-read. She had the “ah-ha” moment today that perhaps she could use the computer. And that’s what she typed.

patience and persistence

patience and persistence

I am so proud of every little victory she makes. I am so proud of her for kicking statistics in the dirt. The average life expectancy for patients diagnosed with glioblastoma is twelve months. Twelve. A year left on this earth if you’re lucky. And that was twenty months and two weeks ago. Tomorrow will be her 61st birthday.

Glioblastoma will try to rob my mom of every faculty. My mom cannot stay awake for long. But she was awake for a little and typed that.

So I typed this. I am sitting next to her hospital bed watching her drift off to sleep, but I had to type this. I am so proud of her. I cannot tell her enough.

I love you the mostest, Mom!! I always have and I always will. I am so proud to be your daughter and to be able to call you my mom.

Tori

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5 thoughts on “this is what glioblastoma looks like

  1. Adele Collard

    Peggy, have you any idea what a wonderful woman you are? We would sit in the teachers room at BP and just share our feelings, thoughts and ideas. Always looked forward to those times, they weren’t often, they weren’t long, we only had a short time before the bell rang and off we went, but the moments were memorable. I am so happy and proud to be considered your friend. Living your life the way you have is a very soft pillow, rest your head my friend and know how loved and respected you are.

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  2. Stacia Young

    Awe! So great that you can communicate with mom! She has done incredible and has beat the odds. You have a lovely family and I am truly amazed by your mom’s accomplishments. She is my inspiration!

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  3. Loretta L. Edwards

    Mrs Baczek you are and always have been the most amazing women I know. Always thinking of thers before you thought of your self. You thought me no matter what life gies you never to give up. To always try your best. And from the very first day I met you I have done that. It hasn’t always been easy as you know. But that’s what you have done this last year sense you were diagnosed with that terrible disease. You have kicked ass and lived your life. I am so very proud of you. You have not let anything stop you. You are an inspiration to me and others. I love you!!! Thanks to your very special daughter Tori I have been able to follow your journey this past year. She is Truely amazing like her mom. I can feel the love you have for each other. It is great. So Tori Thank you from the bottom of my heart!!!!

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  4. Roberta "Proffetty" Gesner

    Peggy I’ve known you since you were a small child. I would sit with you on the McElwain playground playing with your long beautiful hair! How strong you were even then not to complain to the pain with the short hair, who was so envious of you and your locks. I’ve watched from afar not knowing if you remembered those times, and seen a beautiful woman grow into an amazing mom. Keep strong!

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