Thursday, February 2, 2012


February 13, 2012

My weeks seem to be laid out like usual. Monday and Tuesday are low key from the busyness of the later portion of the week. I have to measure activities since it is no small feat to get me ready to go anywhere. Midweek Linda and I join other family and friends at Community Bible Study. We forfeit the small group discussion and meet up with the clan for lecture and lunch! Yesterday the group of girlies included my daughter Rebekah and my grandson Hamilton, my sister-in-law Sharon Chandler , my BFF Linda Holder, and my nieces Ashley Philbrick., Bonnie Chandler, Ashley Chandler and Katie Mitchell- well Katie isn't blood related but she is practically my niece! My latest practice is to allow Linda to eat at normal time and take my meal to go since it can take quite a while for me to eat. The girlies start comparing mom battle stories, or best sales on clothes, or miles run this week, paint colors, glee about new babies... whatever topics are pressing at the time. I love hearing all the conversation, but at the same time it makes me sad...bittersweet. The fact of realizing things I won't ever do again at times are more than I can bear. How is it that the very thing I adore can lead me down a path that leaves me totally undone! I wouldn't have it any other way nor do I want certain topics taboo because I am present. That would be even more sad to me. At times I can feel ok about all the fodder around the table but other times I can't control the heart break and have to give in to tears. Yesterday was one of those times. I cried all the way home. I kept on picturing in my mind Hamilton coloring and I could neither color with him or even tell him how good he was doing! (even if he didn't stay in the lines and had as much marker on his hands as on the paper!)

We have always been an open book so why stop now? When I hear silence from the kitchen I know they are talking about me. I was born but not yesterday. Yet it's still difficult to be absent from important topics. As a total engager I've had to learn the art of being a bystander. Even if I am in front of the eyegaze machine in conversation, the topic has often taken a new direction before I can "gaze" my contribution to what's being said. In April of last year Jeff, Abby and I were asked to represent Arkansas and other men and women from all the fifty states on Capital Hill to plead our case for more funding toward ALS research. When Abby and Jeff went to get us registered, Abby returned taken back by so many ALS patients driving their motorized chairs and having conversation . She said, "Mom, if you could just talk!" When Anna Grace steals a few hours away from college, she lays across my lap, puts my hand on her head, then pats my hand, imitating behavior between us before ALS. She whispers, "don't be sick Mom, don't be sick." Each child has it's own pattern. Joseph drives out of his way for a brief visit. It usually consists of his signature hug and shoulder squeeze. Next he raids the fridge for lunch or makes a quick pb and j, depending on how much time he has. When its time for him to leave, he repeats the hug ritual again. Rebekah asks her registered nurse question, "Mom, have you experienced any changes since I asked you last?" After hugs they all say " I had fun today." They each say "Love you Mom" as they exit the room. Hence, bittersweet. Who came up with this word? Isn't it a conflict of interest? How can a single word express two totally different thoughts? A picture I have in my minds eye is the bottom of the candy jar all alone. You know the bag of hersheys mini candybars? At least at my mom's house and Jeff's mom's house there were always semi sweet bars left behind til some had such a strong craving and would succumb to the lone bars left. ( Is it just me or are there others who will confess to instantly thinking you are supposed to have something in your mouth as soon as you get to your moms house ) ?! The few candy bars could remain months later...they showed signs of drying out by the chalky appearance on the edges. Is that what I have become...the dried out semi sweet candy at the bottom of the jar? Just another place ALS has led me.


  1. Nancy, even though I can understand what you are saying, I can't begin to imagine what it must really be like. Once again, saying 'I'm so sorry' just doesn't cut it. Love to you...Dena

  2. Somehow I missed until now that you had a new blogpost which has me sitting in tears at my computer. I think of you and your beautiful family so much and wish we lived close enough to hug you more often. You are a beautiful, precious woman of God and it breaks my heart to hear about your bittersweet moments and all you are going through. I love you so much Nancy and am so thankful for the influence you and Jeff have been to me and Glen.

    Hugs and blessings,

  3. I really do love reading your posts because it's still a way to "hear" from you and know your thoughts. It is a great source of anxiety for me to know that you have so much to say and yet it is incredibly difficult for you to do so. Thank you for the tenacity and perseverance that is Nancy Chandler that keeps you engaged with this blog! It is an outlet for you and a blessing for us!


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