Carol was diagnosed in August 2016 with ALS, only a month after the death of her husband, Johnny. With the help of family and friends she sorted and packed her belongings and moved from Doylestown, PA to Jupiter Florida to spend her days in the warmth and sunshine surrounded by the loving Sauerberg family and those friends and family who are able to visit. Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. We will share Carol's journey and her health status.
From Carol's note to family and friends in the fall of 2016:
Even though I have ALS I plan to continue giving some of my life philosophy and love. I have had many conversations with my family, especially my grandchildren and dear friends. They have come see me in Florida and it has brought me joy. I ask God how much time I have and He doesn’t get back with specifics yet is always with me. How lucky I am! No, the word is blessed! We’ll find our way through difficult days and make them “golden days”.
Lessons of Love by Krista
I climb up on the bed with great effort, pulling myself up and hang my feet over the bed where they dangle back and forth. Maybe I am three or four. I see her standing at the mirror putting on the lipstick and mascara with precision, making herself so beautiful she gleams in the fading afternoon sunlight. I breathe in the Arpege perfume she was given by my Dad for a gift and admire the latest dress from Saks. I know it was from Saks because my Dad still reminds me 45 years later as we drive down Wisconsin Avenue that this is where my Mom “bought all her dresses.” I know that this is the best part of the night to come as they headed out for some magical adventure. I will not have my back rubbed gently to sleep, but this part of the day, watching this metamorphosis from exhausted mother of four young children to angel before my eyes was always worth the climb. Lucky for all of us, she was simply this beautiful on the inside too.
Those brief moments of putting herself first faded with the many struggles to come. The divorce, leaving her alone with four small children was perhaps the first great test of her mettle. It always seemed the years were filled with someone in need of her love and attention and she dutifully soldiered on without complaint. She cared for her mother, sick children, sick grandchildren and sick husbands. She made casseroles, pies and sang lullabies. A million goodnights singing the itsy bitsy spider as she watches tiny eyelids slowly close. She made beautiful paintings of places and people she loved and places far beyond this world. She explored her life, her mistakes, adventures, loves and triumphs and she explored ideas of life beyond this one. Her writing deeper and more authentic than comfort sometimes allowed. She never missed a step, until she did. She missed the step again and again. First falling into the wood stove during the relentless nights of caretaking of her beloved husband from the dementia and cancer, nights that would barely be survived by those 40 years younger. We were not alarmed, after all, who can wake up 8 times a night over and over at the age of 78? She must be tired, so tired, and when he is gone she will rest and she will be ok. But no amount of rest seemed to steady her gait or return her strong voice full of all the advice and reassurance we were all so accustomed too. And when the doctor solemnly asked “How are you at bad news” she simply laughed and said she was quite used to it. ALS. Three letters I can only liken to a car crash in very slow motion.
The inevitable “whys” of this cruel fate would be a question my Mom never pondered, at least out loud. Her disclosure to her family and many friends of the grim diagnosis reads as if she was announcing an adventure to some far away land, the ultimate glass half full, she has already had a life well lived. Mom’s response was a fiery affirmation of relentless determination to live each day she had left doing all the things she loves to do for as long as this disease will allow and to ultimately choose how her story ends. We all know we are going to die someday she says matter –of- factly, I just know how I will go. Answer to the often-asked question from one of my very best friends as to why I am so annoyingly positive all the time has been answered, apple/tree.
She is still that beautiful to me. Me not so much, as these days my eyes often swell with tears over and over thinking of all the things we would do once he was gone, her all encompassing caretaking done, the time we would make up, the adventures we would have. First stop was to be The Louvre, of course. I will prepare myself for a world where I can only hear her voice as a memory. Lucky for me for those I have lost in this life it is their voices and laughter I still hear so clearly. I will steel myself to watch her struggle and ultimately brace myself for her departure from this life and the unimaginable, a life without my Mom . We will have adventures but they will be different then those I previously imagined. The adventures will be better in some ways, sweeter even, as we are now so deeply sensitized to the importance of each moment that passes. That’s the gift of the suffering of others, the only real meaning I can find in it all, that we are jolted from our complacency and our complaining and our drowning in the problems that really won’t matter at all in the end. She will continue to teach us lessons of love and strength and that both are immeasurable.
As I board the plane to help her pack a lifetime of memories to bring on what will be her last of many moves I am reminded of how tiny all my efforts will be in comparison to all she has done for us. We are so blessed to be the ones who will see her through this journey day to day. We will not be alone, for when you live your life the way my Mom has there are so many who want to give her the comfort and care she so deserves. Karma. One thing I know for certain, my Mom’s beauty will live eternally in her talented artistic grandchildren and her prolific portfolio of art hanging as proudly in the homes of those who love her as it will in the Mitchner Museum. The other thing I know is that ALS has picked a formidable adversary who will battle its immeasurable cruelty with love, and she will win.