A mother’s messages of hope for those living with LEMS
As her daughter turns 18, a columnist seeks to offset the burden of a rare disease
March brings with it a bag of mixed emotions for this mama’s heart. In March 2005, our daughter was born to a mother who would never watch her grow up. She made the hard decision to leave her at the gate of an orphanage instead.
The following March, we were waiting to meet our little girl. We’d been matched and given a picture of her precious face in February, but we couldn’t travel to China to get her until April. That meant we spent March 2006 impatient, wanting to hold her in our arms for the first time.
A seeming lifetime later, that same daughter, Grace, started exhibiting signs of what we now know as Lambert-Eaton myasthenic syndrome (LEMS) in March 2019. This was an excruciating time as I watched my daughter quickly lose basic functions like walking and climbing stairs.
Now, as we move into March 2023, Grace is turning 18. Her life doesn’t quite look the way I imagined it would all those years ago. But life rarely turns out the way we think it should.
I naturally assumed Grace would grow up healthy and strong, but there was no way we could’ve foreseen the health struggles she’d face in her teen years. Not only did Grace struggle with symptoms of LEMS, but she also faced significant discouragement and, at times, depression.
Grace believed that LEMS had diminished her life and stolen her future.
It was imperative that we counter those ideas with messages of hope and encouragement. Therefore, we’ve been very intentional in the messages we’ve poured into Grace as she’s grown into adulthood. I think everyone like Grace needs to hear these words.
You can accomplish anything you set your mind to
We tell Grace that there’s nothing she can’t do in this life if she wants it bad enough. It may take her a bit longer. She may have to work harder than most. But ultimately, she can do it.
We remind her that she has a family and a community that surrounds her with the support she needs to move toward her dreams. I hope everyone in the LEMS community can say the same.
LEMS has shaped who you are
I fought this idea, I really did. I didn’t want illness to define Grace. Whether we welcomed it or not, however, LEMS has shaped who Grace is. It’s made her into the person she is today.
LEMS has opened Grace’s eyes to the rare disease world and those affected by chronic illness. Her experience has given her a deep compassion for others, which is a beautiful thing. She sees a demographic of people she would never have seen before.
Grace notices need. For example, she’s often the one who sees the elderly gentleman trying to open the door while using a walker. She notices the mom holding a baby in her arms while trying to load her groceries in the trunk of her car. Grace not only sees the need; she also acts on it.
Your voice matters
We tell Grace that what she says and does matters. She has the ability to use her voice to advocate for herself and others like her. She can make a positive impact on those who come after her in the rare disease world by educating doctors, spreading LEMS awareness, and modeling what living with a rare disease is like.
There’s no doubt that those living with LEMS carry a heavy burden. However, I believe Grace’s health struggles have created an aperture of opportunity in her life that she wouldn’t have had before her LEMS diagnosis.
I hope each of you finds a way, unique to your personality, to use your experiences with LEMS for good.
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 myasthenia syndrome.