The story of Yvette
When I was 5 years old, my mother was diagnosed with a rare form of Muscular Dystrophy, Dermatomyositis. It affects roughly 5 out 1 million people.
Her disease hit hard and caused her to be bedridden. There were many nights that I would wake up to her cries for help because she had fallen out of bed and could not get up. She did not let that break her spirit though. As time went on, she was able to walk with help from a walker or cane for short distances. I remember going to so many different doctors that would do various tests and studies on her. They would poke and prod her muscles with toothpicks and ask her what she felt. They would take pictures of her and use her for studies.
This did not break her spirit.
She enrolled in school, got a job, and worked 40+ hours a week. We had a small apartment and I remember how excited she was when she bought a new(used) car. She still had to attend a lot of doctors appointments and would have to do IV medications every so often. I remember helping her prep the medications and watching her sit in her chair and crochet with her IV bags hooked up.
Eventually, her disease reached her heart, weakening it. This was a scary time for my whole family, but this did not break her spirit. She needed to have heart surgery. The doctors explained they needed to put a mechanical valve in her heart. I was still too young to fully comprehend, but the night before the surgery, my mom had me sit by her in the hospital and told me that she loved me. She was saying goodbye, in case anything happened. I was too young to realize this.
The surgery went without incident and the road to recovery seemed bright. Then her job called and told her that she did not need to come back to work, that she needed to heal. In other words, she was let go. This did not break her spirit though, she was determined to get back on her feet and provide for us.
Then on Valentine’s day 2003, a couple months after her surgery, she was lying in bed and yelled out for me to call 911. Her chest was hurting. They took her to the hospital and I chose to stay at home, to wait for my sister to get off of work.
The next 4 days passed and I can’t recall anything that happened. I just remember preparing a surprise birthday party for my grandmother(my mother’s mom) when I got the call from my grandma. She immediately asked for me to give my phone to my aunt. 5 minutes later, we are rushing to the hospital. My mother was in ICU, the mechanical valve was failing.
We sat in the waiting room for what felt like hours, I had no idea what was going on. Then the doctors brought my sister and I into the hospital room.
My mother was lying on the bed with a handful of doctors and nurses surrounding her, doing whatever they could to help her, to ease her pain. My mom didn’t look at us, but she knew we were there. My sister spoke words of encouragement to her while I just stood there, unable to speak or fully understand what was going on. We were ushered out shortly after.
My uncle took me home along with my young cousins. We played games and watched movies, but then the phone rang and my uncle spoke the words that I never thought I would hear. My mother had passed. We didn’t throw my grandma another birthday party for years.
I am 24 years old now and not a day goes by that I don’t miss my mother. She struggled with her disease daily, endured pain that I can’t even begin to imagine, but she was determined to give me a happy childhood. And she did.
I suffered with depression since her passing and have wanted to give up many times, but I won’t. She never gave up, so I won’t either.
I joined the fight to bring awareness to diseases like my mothers and I hope others will to.
To everyone that is struggling with a rare disease or to those that has lost a loved one, the battle is tough, but don’t let that break your spirit. We’re all fighting together.