Sept 16, My CMT Journey continued....

I focused all my energy on raising my son, volunteering when I could and being a care taker for my mom. She was diagnosed with emphysema. My brother Ed and his wife Angela moved in with mom. Their son Paul was born in April, 1994. Mom was so happy in her new grandson being born. Each day she woke up to his smiles and that brought joy to her day. My mom used to worry about her grandchildren inheriting CMT. No one was showing symptoms. Although mom watched closely and sometimes she would have a melancholy look about her. Mom, decided to have an experimental surgery out in California. The reviews were good and it was to help emphysema patients improve the quality of their life. In, October 1994, I went with my mom to California. We were there for four weeks. It was a month of emotions. I was so worried about her making it through the surgery. A good friend of my moms and one we called Aunt Margie, came from Florida as a support for both mom and I. Because of my CMT, and my hands unable to grasp things well, we had quite a few mishaps and laughs along our journey. One such incident was when mom and I were coming out of the van that took us from the hotel to the hospital. I was holding onto moms oxygen tank while helping her out. The oxygen slipped from my hands and boom fell onto the ground. The van was running and the oxygen tube was still attached to mom. The driver had a look of horror on his face as he quickly grabbed the oxygen tank which was rolling under the van. Mom said, “Ellen, I survived the surgery, but your going to kill me yet while I try and recover”. When we got home, I would go over and visit mom while Joel was in school. One time she asked if I would get some milk and bread at the store. I said OK, but I was in a rush. Then she asked if she could come with me. I know I had an attitude. It would be so much easier to do it myself. I said, “Alright, but we have to make it quick”. I look back on this now and wished I spent more time with her. Today, I can relate on how mom may have felt. On May 17, 1995, my mom passed away. Another time of heavy grieving and numbness. My son was now in middle school. I just didn't think I could handle any more grief. My mom was my rock. My sister Patty and I relied on her strength and her ability to support us in our choices. Before the age of 40 I lost both my parents, but my brother was only in his early 30's. It just wasn't fair. This grief was different. It tore our family apart for a season where as my dad's death brought us closer to each other and our mom. Mom was the matriarch of our family. If you feel led to give towards researching a cure, you can go to either site on line http://www.cmtausa.org/url/sharkchallenge or to the MDA http://www2.mda.org/goto/CMTChallenge 

Mom at hospital

Mom with her girls and grandsons

Joel with Paul