September 28, My CMT Journey continues......

I need a lot of help from my family. I want to thank my husband Doug for doing all the cooking, shopping and some of the chores around the house. To my son and future daughter in love, Joel and Sara, thank you for always being available when I need you, for those Sunday dinners and lots of hugs. To sister's, Patty and Laura, for helping me with all my needs in getting in and out of places and taking me to all my errands, you have become my feet. To my brother Ed and my sister in law Angie who have become my hands when I am unable to do things. For Angie's laughter in bringing sunshine into a room. For her help with fundraiser and medical alerts. To all my friends who have held me up in prayer and have been a tremendous support. My cousin, Debbie, who helps me when I need her. To my nephews who bring me joy. To my niece, Christine and her children for their support and love. To my precious grand daughter, Princess Zaniya, who brings out the child in me and the comfort of her love and hugs. It hasn't been an easy transition and I haven't been the gentlest of souls. So before we come to the end of my journey and as I am trying to become as transparent and real as I possible can, I must share the ugly side of me as well. I have whined, cried, snapped, cursed, and had pity parties. I said things that were unkind and I may have taken my loved ones for granted. To all those whom I have hurt, I say with all sincerity,“I'm sorry”. It has been difficult to work as hard as I did and not see results. I have taken my frustrations out on those closest to me. I threw guilt and bitterness around like flies on rotten fruit. It has become a spiritual battle of good and evil. In having been active in helping others in need and with church related activities it was hard for me to be on the receiving end. Many times I sat alone and sad as life revolved without me. Everyone was busy with work, families, vacations and ministries. I even had to refrain from facebook at times as it was hard to see others enjoying life. I tried to take the last three years of my life and produce good fruit as well. I memorized Bible verses that bring me hope. Late at night when I can't sleep and I become emotional I recite from memory my comfort of hope. I sleep well. I am learning a new way of life. I see adventures but not as before. It will be a learning experience but it will be exciting. I will have to find different ways to get around. Does it matter if we walk, run or use a scooter? When we get to our place of destination, how we get there is not as important as getting there. On a CMT Facebook page someone asked a woman of maturity what her secret was in living a fulfilling life with CMT, her answer went something like this, “I get up, I get dressed and I get out”. I am looking forward to this new chapter of my life. Perhaps next year I'll share a different journey with CMT. I love my family and friends. I am looking forward to lots of shared adventures with you all. “The rain and snow come down from the heavens and stay on the ground to water the earth. They cause the grain to grow, producing seed for the farmer and bread for the hungry. It is the same with My word. I send it out and it always produces fruit” Isaiah 55:10-11. If you feel led to give any donations for researching a cure, you can give online at http://www.cmtausa.org/url/sharkchallenge or to the MDA http://www2.mda.org/goto/CMTChallenge

The next generation 

Fun times with family

Love my family