Holiday Road

The tree is glistening with sparkling lights. Each ornament has a particularly special meaning. As a look at each one I recall a special student , coworker, friend or family member My Brittany didn’t complain about hearing the same stories about the ornaments I always tell. She very willingly put up the ornaments and all my other Christmas decorations. A fleeting thought came to mind already this holiday season…would it be my łast? As I looked around on our family dinner celebration for Christmas I realized it didn’t make a bit of difference. I watched my daughters interact with my cherished friend Trisha. Trisha is part of our family because she and my ex husband are dating. She is such a wonderful woman who cares genuinely about the girls and me. She comes here faithfully to take care of me and is our total back up I truly know that when I have to leave this earth that the girls will be held up and supported by her.

I thought about this isolated feeling as the holiday road took its path to my next part of the journey and truly needed to turn it around. Whenever the path looks bleak I have to turn it all around and think of the miracles that have been dropped on us. Brittany, Stacy, Donna, Trisha, Jenny and Jillian have been faithful caregivers from day one of this wretched diagnosis. They, along with my husband, make my everyday easier. Feeding me, bathing and bathroom, helping me transport safely and wipe my tears when I go to the darkness of what I have lost They make me laugh and and are generous with time and words of love and encouragement. Stacy and I met through Facebook a few years ago. She and I had 5 mutual friends that did not know each other but knew us We just had to be friends. Not a day goes by she doesn’t come here with a smile and a servants heart. There is always a willingness to take me anywhere, run errands, listen to my endless ramblings or give me my hearts desires. I can trust her with my most personal needs or thoughts. Her lifestyle reflects a woman of integrity, honesty and incredibly gut busting humor. Stacy is my renaissance woman.

Donna and I have had a longtime friendship that used to usually lead to coffee and a sweet at an Italian bistro and has now turned into ice cream and dr Oz for a few hours a week She is strong and lifts my broken body like a rag doll I love her “nothing can change my love for you” attitude. She taught me how to love unconditionally, to use ”on demand” and to hook up a DVD player. I believe in her and love her dearly

Jenny has been my dear neighbor for the past 23 years. Her son Charlie, age 17, was diagnosed at birth with mitochondria myopathy. This form of muscular dystrophÿ is as devistating as my ALS …no cure no hope. This was thrust upon Jenny and her husband and yet they are still together through it all . She has been compassionate and extremely helpful with giving my husband evening respite We watch movies and chat for hours. I would lay my life down for my little sister, Jenny. She epitomizes the true meaning of pure love

Some other miracles dropped in my lap recently are also the stuff that is turning my attitude around. My cousin Barbara took me for a wonderful weekend to Miami. I was so thrilled by this generosity. Mike, our daughter’s fiancé was contacted by his mom last week. He said her neighbor died and his family wants to give us the handicap accessible van. What a blessing. Our neighbors, Dee and Stu and Denise and Tracy have made beautiful meals. They pay no mind to my husband feeding me The visits, meals, words of encouragement, and the prayers…all appreciated. How can I think about self pity? I have been blessed not with the big miracle I had hoped for. God has never left me but has provided me with clear evidence of his love and abundant grace. Soon I will be unable to speak which will conclude this blog and my ability to tell my beloved how much I love him.

All this love…an investment of my lifetime. Unknowingly securing a place in the kingdom through loving and laughing together through my numbered days. I will continue down this road and enjoÿ my gifts and not focus on the past


One response to “Holiday Road

  1. Hi Mare, Your blog has certainly shown what a wonderful writer you are. When someone expresses their experiences & feelings like you do, it just makes us all sit back and take a good look at ourselves. I truly envy those that are around you and can help you at this time,in your life. I so want to be there. You are like a sister to me! Well, I didn’t really have to say that – you knew that! Now the holidays are past and focus is on the wedding of your oldest! How fabulous! There are many things to look forward to. Please keep your chin up. We all love you so much,Mare

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