A Day in My Life as a Mom of a Daughter With Chronic Illnesses

Like most parents, I want the best for my daughter Paige. It was never easy for her growing up. She always “beat to her own drum,” so to speak.

She had trouble keeping up with others and was set apart because of it. She wanted friends, to play as others did, to learn as others did. We did everything we could for her throughout her school years. She had many struggles and conquered each one. Many tears fell over the years. But she made it, graduated and I couldn’t be prouder. She is perfect in my eyes, only I think she sees herself as less than perfect. Some days her mind wants to do something and her body is not able, or her body is physically able and her mind isn’t. The two rarely sync together.

She is strong, smart, and has the drive that will get her through dysautonomia, gastroparesis and meralgia paresthetica and anything else the world wants to throw at her. It won’t be easy, but has it ever?

A typical day is going with the flow. Every day I ask, “How are you?” No two days are alike. If she is having a flare-up, I leave her alone until she can cope. The brain fog, stomachaches and legs not cooperating throw her off and until she can feel comfortable being mobile, I feel she’s best left alone. Some days I help her around the house. Some days it’s just making sure she has everything she needs (food, water, etc.).

Dysautonomia doesn’t always allow her body to regulate its temperature, so it’s been a war with the thermostat lately. Hot, cold, hot, cold…

Another struggle is food. What she can eat one day may set her gut into orbit the next, thanks to gastroparesis. Some days she can’t eat. It’s a never-ending battle.

Meralgia paresthetica basically is when her legs get tingly, so she moves into a different position. For her it’s bothersome than anything, like how your leg feels when it falls asleep, so I don’t worry too much about it.

People can be cruel. Ever dealt with a bully in school? Ever dealt with adult bullies? She is constantly bullied. Take shopping, for example. With this outing she uses a scooter to get around. The looks and the rudeness is hard on her. She’s 19, why use the scooter? Leave that for “someone” who really needs it, is what I imagine people are thinking. Sometimes she walks — she’s not always in a chair.

The permanent parking placard is nerve-racking. She’s a teenager and can legally park in accessible spaces. It’s not just a close spot to the building — it’s a reminder that she has a disability. Pulling into and exiting the car can be a challenge. Because she doesn’t “look sick,” we often get dirty looks. I want to pass out cards explaining her illness.

It’s not fun. It’s a nerve-racking, challenging, daily struggle of life. There are unanswered questions like: Will she get better? What started this? Are there underlying issues? How will she handle children? Will this be passed on to her children? What about college? Work? Driving? Will her life ever be “normal” or is this her “normal?”

On good days her autonomic nervous system functions as it should and she gets a glimpse of what normal is. I am thankful for the few good days.

What’s it like for me, her mom?

It’s hard. It’s hard to listen to her talk about her dreams being shattered. About not being a productive member of society, about feeling useless. I encourage her, but I don’t have answers. I feel useless, I feel empty, I feel like I can never do enough. If I had a magic wand to make all the illnesses go away and life would be great and she would be cured, I’d do it in a heartbeat. But in reality I don’t have a magic wand. It’s hard because she looks to me for answers, for guidance, and I find myself not knowing what to say and I can’t fix it. The best I have is a listening ear, hugs, tears and a prayer. All I can do is my best, even if it’s a hug.

Those are some of the struggles of living with my daughter who has chronic illnesses. It’s not fun, but it’s not all doom and gloom either. It’s, simply put, our life, and we handle it as it comes. 

When Paige is discouraged, I always tell her it’s going to be OK. We will figure it out. We always do and we always will. We will beat dysautonomia. We will beat gastroparesis. Paige, you will be successful, because I’m not giving up without a fight. There’s always a way. We just have to find it.

My greatest wish for Paige is for her to know her self-worth and how special she is to others. She is an amazing person and has so much to give to others. Her illness doesn’t define her, her strength and loving nature does.

If you are the parent of a child with a chronic illness, don’t think you have to take the advice of the first doctor you see. Seek a second opinion or a hundred — this is your child you are fighting for. You are in control of their care. Educate yourself so you have the knowledge to not only help your child but to help during doctor’s visits. Knowledge is power. 

Life is full of challenges. It’s just that we “beat to a different drum,” so to speak.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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