So Live Your Life (Hey! Ay ay ay)

For parents, I know that giving birth to a child can be a very unknown experience because you have to go with the flow and learn as the days go by. There are good and there are bad. Some days happy and some days sad. Parenting is a roller coaster. Parenting isn't easy but with love, support, and faith, the experience can be something that you wouldn't give up for anything in this world.


That's just my view on parenting from looking at how my mom raised me. I know for her, when I was young, rasing me was challenging. I went from having no diagnosis to a guaranteed diagnosis, Ullrich Muscular Dystrophy. Then God said, "Let's make it rare so she can be even more of a baddie out here!" (Okay, I know he didn't say it like that but I and the Lord are besties so in my head that's how he said it!).



My mom's life became even more different when learning that I have a disability. She had to learn more about my disability, learn about different equipment that will help me with my everyday life, and traveling to different doctors and hospitals to figure out the best treatment to help me live a healthy life. I know it was stressful at times for her because she even questioned if she was doing enough as a mother and seeing if she was raising me right.

After being diagnosed with my disease at the age of 9 or 10, my mom decided to go to a group for moms with children with disabilities to get advice and support. My mom thought she was going in with an open mind, little did she didn't know, she would leave there with open eyes.

While my mom was listening to different mothers tell their stories about their children's disability and how they were raising them, my mom experienced these mothers raising their children to die. Meaning that these mothers lost hope in their children's health, they started raising their children as if they were ready to put them in the ground. Basically crippling their mind to the point that their children will feel there's nothing else to live for because they have a disability.


My mom couldn't handle that so she left. Now, I know many would wonder why she would leave because she has a daughter with a rare disease and these mothers would understand her struggle. Well, I'm here to tell you, my mom saw that this wasn't the way to raise a child with a disability. The child being disabled is a challenge enough so why, as a parent, raise them as if their disability is the worse thing in the world when it isn't.


My mom loved me and still does. She didn't want to raise me to die even if that was to happen. I'm her child so why would she want me to go? She knew she couldn't do that to me. She saw that my life was more than Ullrich Muscular Dystrophy. She knew that it was more than a wheelchair.



She raised me in her own way. She raised me to be strong, to be confident, to see the positive in a situation, to understand that if something doesn't work one way, try it a different way, and she made sure to raise to understand that I can do anything I set my mind to do. I will say at first, I thought she was mean! I just knew homegirl was doing the most by being hard on me but I also knew it was for me to live. Live a happy and healthy life. To not allow the world to tell me that I'm nothing or useless just because I have something that makes me different.


My mom didn't know what Ullrich would do me when I was young and some days we still don't know. She didn't know if I would die or get worse, but she knew she was going to make sure to raise me to LIVE LIFE.

She is the reason I am the young woman I am today. She is the reason I am able to be vocal about people with disabilities and our needs, be able to be confident, see the beauty within my disability, LOVE ALL OF ME, and she is the reason I'm still living my best life.



I end this to say, live your best life. Never allow your circumstances stop you from living your purpose and living the life you deserve. You are more than the situation you are in. Never give it the power to control you because I always say, "I may have Ullrich, but she doesn't have me"



37 views2 comments

Recent Posts

See All