Huntington's Disease Society of America
“I promise, you will never regret it.” My Grandmother used to always tell me. I believed her to a point, but I think I still had some doubts. I have since learned that her promise was true. I do not, and never will, regret taking care of my mom.
“You have tested positive for Huntington’s disease.” The scariest thing my mom probably would ever hear at the young age of 28. There was, and still is, no cure. Can you imagine the devastation she must have felt, knowing a disease would take over her? A disease that gives you a drunk-like movement, slurred speech, eating troubles, mood swings, and trouble at comprehension? On top of this, my mom already had four young children. To look in your children’s eyes and know that you, someday, will be ‘taken away from them’ and not be able to care for them? I don’t remember much about my mom before she got sick, but I always knew how much she loved us.
When I was younger, I knew my mom was sick, but I didn’t understand completely. I thought it was just a disease that you could get over. I did a lot of the cleaning, and it was so irritating to clean up after her because she wanted to do things all by herself and made a huge mess. When she wanted juice she would get out all the mugs from the cupboard and spread them out on the counter and overfill them all and spill juice everywhere. The dishes and juice were A LOT to clean up! No one I knew had to clean up after their own mom, especially at my age. I was so angry. I was angry my mom was sick. I was angry I couldn’t fix her. I was angry I didn’t completely understand it all.
I struggled with being embarrassed of going places with my mom because she looked drunk and we couldn’t control her. Everyone stared at her, and it made me so angry. I’m not sure whether they were glancing out of curiosity, sadness, compassion, or judgment, but I didn’t care because I didn’t want people staring at my mom. As time passed, her movements got to the point where she was falling constantly and her speech got to the point where I was the only one who could understand her.
I knew my mom was getting worse when she was no longer smiling and giving me hugs . I remember Saturday February 18, 2012 so clearly. Mom was taking a 5-day respite at the nursing home so I could have a break because she was hard to handle. I walked in her room and saw her lying on her bed with purple and black swollen shuteyes from previous falls. I couldn’t bear to look at her. She tried sitting up with her swollen shut eyes and moaned. I almost ran out crying. That night, I went home and had a meltdown. How could my mom just all of a sudden get so much worse? What happened to the few years we thought she had? How would I adjust to not caring for my mom anymore? I couldn’t stop crying no matter how hard I tried. It was time for me to face the truth. My mom was actually dying, and I HAD to let her go.
Three days later, I contacted my family telling them that if they would like to see mom that they may want to come soon. My grandmom sat by her side holding her hand. Without any prompt, people one-by-one came and sat all around her in their own timing. We all sat in silence. Waiting. Watching. I held it in so long, and I felt the need to pray. I prayed God would take her peacefully, and bring our family comfort.
“Take Melody and Destiny out” my grandmom said. “No! I can’t leave her! I can’t!” I screamed. It was all happening so fast. “Was my mom dead?” “Why are they making me leave her?” those thoughts burned inside of me. It was 1 AM, on Thursday, February 23rd, 2012. My mom was gone.
Our mom died 5 days before her birthday. We thought it would be a great idea to have her funeral on her birthday, and have cake and ice cream afterwards. Our mom loved music, so we made the funeral a celebration service with lots of singing, and our school choir helped sing and do a skit. It was honestly, the best funeral I have ever been to. It was SO beautiful, just like my mom.
Walk with Destiny On May 17, 2014 www.hdsa.org/thwdesouth