With hindsight, some things I’d change during our LEMS journey

I wish I'd started sooner looking for community and options — and avoiding guilt

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by Lori Dunham |

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Parenting comes with the danger of holding on to a lot of regret. As our kids grow up and move into adulthood, we can fall into the trap of blaming ourselves for all kinds of things they encounter.

That was definitely the case when our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 15. When her illness was labeled an autoimmune disease, I immediately felt guilt: Was it somehow my fault that she developed this condition?

I needed time to work through those feelings, but I’ve come to accept that we live in a world where there is sickness and pain. We wish our daughter were not burdened with this disease, but nonetheless, that’s our reality.

However, I also accept that if I could go back in time, I’d definitely do some things differently, especially at the beginning of our rare disease journey.

What would I change if I’d known then what I know today?

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I would’ve taken my daughter to a rheumatologist a lot sooner

I understand there are steps in diagnosing and treating LEMS. But our progress to recover movement and stability stalled at our neurologist’s office. We were unaware that other treatments were available.

Her neurologist was willing to wait and see. So we did. Looking back, though, I wish I’d pushed a little harder for more options.

I would’ve jumped into the LEMS community sooner

When we started this journey, I didn’t know the LEMS community even existed. The rare disease world was so foreign to us; I had no idea that forums, Facebook groups, and other people out there were willing to share their knowledge and friendship.

I took a few months to find the gem that is the LEMS community. Connecting to this community immediately alleviated our loneliness and fear.

I would’ve paid closer attention to her siblings

When Grace got sick, all of our attention went to her. In my haste to help her, I didn’t recognize the trauma that our other children were experiencing. While I was out of town trying to find answers to Grace’s health problems, our youngest daughter fought anxiety and stress, brought on by not fully comprehending what was happening with her sister.

I needed years to uncover the complex feelings and effects that Grace’s LEMS diagnosis had on her siblings. I wish I’d known to offer them help and support earlier in this journey.

Regardless of all I wish I could change, we did a lot right. We fought when we had to fight. We stayed the course and advocated for all of Grace’s needs. And today, our family is stronger because of LEMS.

Parenting is hard enough. There’s no need to heap guilt upon guilt over things we can’t change. We take what we can learn from these experiences and move forward, striving to do our best for our loved ones living with LEMS.

Are there things you’d change on your LEMS journey if you could? Please describe them in the comments below.

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.


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