I Am Battling a Chronic Disease That Limits My Time as a Parent

“Mom, I’ve got it. I don’t need your help.”

I think my sixteen-year-old son has these phrases on auto-play. I hear them several times a day. I know it’s normal at this age, but I don’t want normal. Normal means that a teen naturally distances himself from his mom. He becomes independent. He begins to live a life with his own decisions and consequences. Eventually, he will come back to appreciate having a mom and renew his relationship with her. He will again value her opinion and appreciate her help.

But, I don’t have that luxury. I don’t have time to wait.

stressed woman
My illness already took away a career I loved. I am determined  not allow it to take away my reason for living: being a mom.(Twenty20 @alaskangeles)

I’m sure many mothers feel this way. We meandered through the first sixteen years, teaching our kids to read and do basic household chores. Then, suddenly, we realize there are millions of things we haven’t taught them as they are nearing the end of high school and preparing to leave. Car care, how to make doctor appointments, organizing important documents, and protecting their identities. It’s as if they go from learning to navigate being a kid in high school to surviving as a full-fledged adult in a quick minute! Does he have a clue how health insurance works? How to file a claim on his car? There’s so much to do and so little time!

But in my case, it’s not because he only has a year left at home. I’m battling a chronic, disabling illness.

My disease slowly takes my balance, my memory, my speech, and my vision. How long I will be blessed to live as a functional, independent member of society is unknown. This illness already took away a career I loved. I am determined  not allow it to take away my reason for living: being a mom. My first and foremost priority.

I feel such a rush with this mothering job. I’m not guaranteed to have twenty, thirty, or sixty years to teach, love, and experience all that mothering requires. I lost my own mother at the age of thirty-one. I came to realize how much advice and wisdom I’d missed out on. From decorating my first home, to feeding a family of four. How to remove stains to how to break a fever. I didn’t have my mom to ask and I needed her. This loss also propelled my desire to cram as much mothering into these years as I can.

My daughter was almost on her own when I was diagnosed. I was already beginning to let her go. Although, if asked, she she would probably say that I still offer unwanted advice on a frequent basis. She can casually mention something going on in her life and I will immediately jump on the chance to share ideas and wisdom from my experiences. Fortunately, she’s at an age where she can respectfully put me in my place, tell me to mind my own business, and forgive me for being too motherly, all in one phrase. “I love you, Mom,” in the middle of my speech usually does the trick.

The pressure I feel to hurry up and mother is mostly directed at my son, who is three years younger and still living at home. Now that he has a license and a vehicle, I was fired from my job as taxi driver. This means I no longer get the time to bombard him with helpful suggestions about life while he’s helplessly locked in my car. So for the few minutes he’s at home from school to change his clothes for practice, I excitedly get up from my bed, where I unfortunately have to spend a lot of my time, and I become an overeager servant.

“Hi! What can I help with? Do you need a snack? Can I fill up your water bottle? Did you find your clean uniform on your bed? Want me to find your shoes? Would you like some fruit?”

“Mom, stop. I’ve got it. I don’t need your help.”

Fortunately, this is true. He’s a very responsible kid with a good head on his shoulders. I will take some credit for raising him to be this way to this point. But in my heart, it hurts that he hardly needs me. I want to be a mom while I can.

“Do you have your paperwork? Remember to tell your coach you will be late for practice tomorrow. How many boys are on the team this year? How have you been doing?”

“Mom! Stop asking so many questions.”

Besides assisting and problem-solving, moms just want to be involved in their kids’ lives. My desperation and neediness is off-putting. I understand. But I couldn’t help but pathetically shout, “Be thankful you have a mom! Not everyone does!” as he went out the door.

My commitment to mothering is annoying to him and only serves to distance him even more. My help with managing current stress and schedules is unwanted. He’s barely on the cusp of needing my wisdom about resumes and job interviews. He’s not ready for my motherly advice on marriage or child-raising. But my fear is that I will not be be there for him when he finally does need me. Heaven forbid he will be caring for me instead.

So what are my options? Continue to “s’mother” him? Back off and miss my opportunities? No, I have decided to just be.

Be available. Be approachable. Be supportive. Be patient. Be in the cheering section. Be ready on the sidelines.

Maybe being a mother isn’t unloading every single bit of wisdom on every topic under the sun. Maybe it isn’t rambling about “been there, done that” stories to teach lessons. Maybe it’s not helping him around the clock. Maybe it isn’t being alive for the next sixty years.

Maybe it’s merely being a presence. Real or subconscious. Someone who laid a strong enough foundation for a budding adult to have common sense and self-sufficiency skills. Where, if needed, he can imagine what his mother would say or do. Where he pulls from a variety of memories to arrive at answers for his future. And where he realizes that, despite being jilted out of growing old with his mom, that she still gave him everything he needed. Just by be-ing his mom.

You Might Also Want to Read: 

I Hope I can Help My Kids Learn What’s Truly Important in Life






About Janelle Sims

While battling Multiple Sclerosis, Janelle Sims is a retired teacher, freelance writer, and author of a book entitled, “Getting Along with Missy.” She focuses her energy on her husband, two teenaged kids, and a demanding Shih Tzu named Greta. Janelle strives to stay positive, entertain others through humor and pass on lessons she learns from her experiences.

Read more posts by Janelle

Don't miss out!
Want more like this? Get updates about parenting teens and young adults straight to your inbox.