"It was the best of times, it was the worst of times.". A familiar line from Charles Dickens' A Tale of Two Cities, sophomore English with Ms. Mozelle Johnson. This was the first thought that came to mind when I considered 2010 coming to an end,making way for 2011. The typical thought process of evaluating myself with regard to spiritual growth, personal behavior toward family and friends, physical health, and work performance just didn't seem to apply! Not that I couldn't stand a dose of improvement in each category, but I'm not working, I can't stick my foot in my mouth nearly as easily since I can't speak, and physical movement is saved for physical therapy to keep me able to perform basic tasks. Since my brain and emotions have not been affected, there is always need for spiritual growth if you get my drift! Even though I can't talk using words, my eyes and facial expressions can speak volumes! The ALS diagnosis was life shattering. The only thing I had experienced that even came close occurred at Arkansas Children's Hospital, April 25, 1999, when our youngest child, Anna Grace, received a diagnosis of Type 1 Diabetes. One moment our family was rocking along doing what " normal " families do, and in a seven hour period of time our world was forever changed! We had no history, on either the Cook or Chandler side, of this disease, so how could this happen to us? I delivered her naturally using only breathing techniques to get through labor, I nursed her, I stayed home with her, I prepared healthy food for my family. I did everything I knew to provide and protect her, and yet I could not prevent this life long disease from attacking her seven year old extremely healthy body. During her hospitalization we received tremendous love and support! Anna Grace's bed had so many balloons tied on we thought it might levitate! She had Beanie Babies lining the room like it was the fourth floor gift shop! We handled this new challenge one day at a time, learning all we could to help her world seem as normal as possible even though it wasn't. What does normal look like for a child that has to be stuck 8-10 times on a good day when blood sugar numbers are in the zone considered PDC, perfect diabetes control. We partnered with Anna Grace giving her shots, (she thought Joseph did the best). Never did he put her off or complain when she asked him to help. Try relaxing when your child has to remember when to check, calculate how much insulin, and what to eat at meals or snack time when spending the night away from home with a friend. We didn't have all the answers but were committed to
helping her embrace life and not shy away from anything she wanted to try because it seemed scary to us or more complicated. Anna Grace is a college sophomore and the only thing slowing her down is me! She postponed a three month trip to study in Chile this semester and application to work this summer at Camp Sweeney, a medical camp she attended nine summers for kids with diabetes. ( please don't ever use the word " diabetic" when referring to a person. They HAVE diabetes, it isn't who they are! I abhor the word if you can't tell and it has been one of my soap boxes to strike that use of the word from everyone's vocabulary! ) So here I am, somewhat stuck at how to approach 2011 with a disease I can't control. Somehow I can't get the same rush from setting goals I know I can do very little to accomplish. Things like walking, talking, feeding myself, standing up, dressing myself, putting on makeup, or washing and blow drying my hair myself are in my past no matter how much determination I can muster. The one thing I have some control of is typing. Because I have so many things I want to write, to leave my account of thoughts, events, memories, and challenges for my children/grandchildren, I limit writing and responding to
emails or Facebook messages which is a big deal to me! I want to type 24/7, but again I have lost control. Frequently, by mid afternoon my fingers are curled under and my shoulders are void of strength to manuever over the keys except for simple words or phrases to let Jeff know something I need. I would rather communicate than eat, and I love to eat! So instead of setting New Years' resolutions I played a mind game to pacify myself! I played like I had one day without ALS and could do exactly like I wanted! So here's what I designed in my mind...
I popped out of bed for a three mile run and prayer vigil around my neighborhood, cooled down while pulling a few weeds from the flower garden, and then came inside for coffee and a protein bar to find Jeff playing his guitar, a typical early morning ritual. We chatted awhile before I called my mom to check on her and what she had planned for the day while unloading the dishwasher, starting some laundry, and folding one load that dried while I was running. It is such a beautiful fall day I decide to call Rebekah to ask if I can come pick up Hudson and Hamilton for a little "Nan" time to buy groceries, drive through Chick Fil-A for lunch and head to the park near their house to eat and play before nap time. Of course she agrees to my plan with delight so I quickly shower and get ready for the day. For some reason it is s good hair day I think as I look in the mirror one last time before leaving! I remember to grab a bottle of bubbles for part of our fun at the park as well as a wet washcloth in a ziplock bag for sticky little fingers when we are through! How many fun filled kid picnic trips have I had through my parenting years I wonder as I drive off? While driving I sing at the top of my lungs the current favorite song that I seem to hear over and over in my head and can't dismiss for some reason. I'm greeted with the sound that makes my heart skip a beat! "Hi Nan" they shout as they run toward me and wrap their arms around my legs! We pile in the car and as we are about to leave I have one of those spur of the moment ideas for a family/friend cookout, the more the merrier! I tell Rebekah to send out a blanket text invitation and get back to me with a number. The boys and I have a great time and I deliver them home just in time before falling asleep in their carseats. The rest of the afternoon is spent preparing the basics for burgers and homemade chocolate and vanilla ice cream, of course. As everyone gathers I see signs of a crowd with more and more cars arriving and hear the sounds I love of the front door opening, bringing familiar voices of adults and children I hold so dear! We talk, laugh, eat, and talk and laugh some more. I'm sure there would be some guitar picking and three part harmony somewhere in the evening, or a card game while kids run in and out. Now this would be a red letter day, ranking high on the list of favorite days in my book. I know because I have had the privilege first hand many times!
The "worst of times" began for me December 2009 when I first noticed something different in my speech and has followed me to the present. But simultaneously the "best of times" occurs as well! How can that be? How can I be miserable and content, even happy while I daily struggle to hold on to the most simple physical tasks? Literally everything about my body has changed. Only my vision, hearing, sense of smell, and brain power remain untouched. Today. The answer is the love of God at work through His people given freely and continually to me and my family. It's the Acts 2:42 principle come to life! How I wish we could live that way void of crisis! To be that tuned in, that available, that willing, that generous, that loving, that attentive would truly make a difference in our churches, schools, communities, neighborhoods, friendships, and families! Here's to making the most of the new year, 2011.