Happy Mother’s Day, From a Daughter Whose Mother has HAE

Ever since I was little I have always loved the thought of Mother’s Day. My mom has always been a hero in my mind. I remember thinking to myself, “She is so pretty, smart, and strong.” So, I decided when I get older, I would like to be an amazing mom, too!

I like to think of my mom as a warrior. She has had to go through many difficult times, from really long hospital stays to what seems like an endless swell cycle at home. My mom has a disorder called Hereditary Angioedema, or HAE for short. I know it’s a mouthful.

My mom has been out of the hospital for a little over a year now. She used to spend many weeks at a time in the hospital. It didn’t seem like she was home very often. Most of the time we would have to spend important days in the ICU with her. You have no idea how hard it is to have a mini birthday party in a hospital room. It’s been nice to hang out with her in our own home and not with the beeping sound of a monitor in the background.

With everything my mom has been through, my brother and I like to call her Wonder Woman or a Warrior Mom. Even through all of the struggles, she is still there for us no matter what. Having a mom with a disorder, rare or not, can be tough. However, having such strong role models help teach you how to be strong too.

Since my mom has HAE, it can be difficult to spend time together or do certain activities. Thanks to an amazing new medicine, my mom can do so much more with us now. I remember when there was no medicine for her disorder, as I was scared and didn’t know what to do. I felt like I couldn’t solve the problem. A lot has changed since then. Now, I get to help her with her weekly infusions. Every Monday and Thursday I help my mom infuse her HAE medicine. We watch movies and TV shows together, or talk about things that happened that day. I love being able to help her and hang out with her at the same time.

Even with all the complications that come with her disease she still makes me laugh. We still go to the mall and get coffee. She even still tries to cook on better days, even if it’s hard for her to stand due to a different injury. She still loves me, shares funny and interesting stories, teaches me how to sing, style hair, and cook different things. She also gives me tons of advice about many things.

With all that has happened she is still the best mom that I could ever ask for. I remember someone asking me if I could have a different mom, would I do it.

I said, “No. No matter what, my mom is perfect to me.”

I see how being a mom can be challenging, with or without a rare disorder, but she still tries her best to be there for me, just like I do for her. That’s what makes her extra special! That’s what I think being a mom is all about. With me having a Warrior Mom I feel that I’m strong enough for anything. Now, with today being Mother’s Day, it’s time to go show your mom some love! Happy Mother’s Day!

Remember: a chapter ends, your story doesn’t.

– Alayah, 13 years old.

About the Author: Alayah is the 13-year-old daughter of Loukisha Olive-McCoy (pictured), a PW Contributor diagnosed with chronic pain and Hereditary Angioedema (HAE), an extremely rare and potentially fatal disorder. Even though Loukisha must do bi-weekly infusions and experience daily excruciating pain, she hasn’t lost her appreciation for the simple things in life. She refuses to let her physical conditions define her. She loves being a wife, mother, sister, daughter, and friend. She wants to show others that living with an illness doesn’t mean that life is over. Follow and like her YouTube channel, Twitter, Instagram, and Facebook page called Loukisha’s Story. There you’ll find personal stories about the beauty and hardships in her life. On her page she encourages people that everyone has a story to tell, so don’t be afraid to tell yours.

To learn more about Hereditary Angioderma, click here.

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