With treatment, my daughter is living life to the fullest

When our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at the age of 15, worry consumed me. I wondered what her young life would look like as she grew older.

The unknown kept me up at night. I worried about Grace’s quality of life and if she’d be able to walk again. Would she be able to learn how to drive, go away to college, hold a job? Would this illness hinder her dreams and ambitions?

Although we still live with uncertainty today, I don’t worry as much as I used to. In the past five years, I’ve come to better understand how LEMS affects Grace’s life. Yes, some things are harder for her than for other people because of LEMS. She tires easily, and her ability to walk is limited. For every activity she wants to do, she has to think about how much energy it’ll take and how it’ll physically affect her.

However, with healing comes a lot of hope. And thankfully, Grace, now 19, has experienced tremendous healing with treatments such as Rituxan (rituximab) and five years of physical therapy, among others.

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The one thing I do find myself worrying about is inadvertently placing limits on her that don’t need to be there. As Grace’s mom, I want to equip her with the tools she needs to pursue her dreams and ambitions without hesitation. I certainly don’t want to hold her back.

But as her primary caregiver during the early, tumultuous years, when she’d frequently fall and was losing muscle strength and the ability to walk, I got into the habit of protecting her. I’d point out every jagged sidewalk or rock in the road. I’d hover over her like the protective mother I was.

There was a time and place for that careful attention, but it’s no longer needed. If I do that now, Grace might see it as a lack of faith in her ability to do whatever she sets her mind to.

There are many things that Grace misses and wants to try again, such as ice skating, riding a bike, and playing basketball and volleyball. The ice skating made me nervous. But it’s not about making me comfortable; it’s about giving her room to try.

I’ve come to the conclusion that Grace is much braver than I am. She wants to live life to the fullest and is willing to fight for it. She doesn’t want to be hemmed in because of worry or fear. She knows her body, and if she wants to try these things, I shouldn’t bring negativity to the situation.

So I squelch my instinct to protect her. I let go of her elbow and allow her to walk gracefully into her future, with her family cheering her on.

Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenic syndrome.