Guarding Against Comparing Our Situation With Others

Some days are just harder than others. Wouldn’t you agree?

Much of the time, I feel like we are moving along nicely on this rare disease journey. We are in a good rhythm with the treatment plan for our 16-year-old daughter, Grace, who has Lambert-Eaton myasthenic syndrome (LEMS). Yet, out of nowhere, I was hit with a wave of emotions brought on by the most unlikely of things.

Intravenous immunoglobulin replacement therapy, or IVIG, has been a part of our lives for over a year now. The grueling two-day, in-hospital infusion takes about six hours each day. For the most part, Grace and I have a nice rhythm to those days. The barista at the Starbucks in the hospital knows our order by heart. The nurses recognize us by the Chick-fil-A bags. So, it was a surprise to me when we went for our monthly IVIG routine and I found myself bowled over by some pretty heavy emotions.

Most months, we have to schedule Grace’s IVIG around Thursdays, the day when the children’s hospital holds chemo clinics each week. But this month, we were unable to go earlier in the week, so they squeezed us in on Wednesday, with our second round on Thursday afternoon.

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My emotions were running high as we passed room after room of little children and teens hooked up in a manner similar to Grace, but with chemo running through their veins. I’m sure the sight of those parents, who are dealing with life-threatening illnesses in their children, left me emotionally vulnerable.

When one of the last kids from the chemo clinic cleared out of her room and the nurses gathered with her family in the hallway outside our door, we had a front-row seat to their celebration. It seems she had completed her last round of chemo and wouldn’t be visiting the day hospital again. They clapped, took pictures, and sang as she rang the bell signaling that her treatment was complete.

The celebration bell signals the end of chemotherapy treatment. (Photo by Lori Dunham)

My tears were from pure joy for that family and child. To have their child’s health and future reclaimed is truly a beautiful thing. It was a moment filled with hope and promise.

Yet, shortly after, the halls grew quiet and the beeping of the blood pressure machine pounded in my ears. I looked at my daughter, and for a split second, I allowed myself to grieve. I grieved that my daughter would never get to ring that bell. This is not a disease that will go away, short of a medical breakthrough. I felt hopeless, thinking that we would never get to celebrate Grace’s last day of treatment.

But I know these thoughts are unhealthy. We have much to be thankful for. I have equipped myself with tools that help me dig out of the cycle of self-pity and grief:

• I no longer allow myself to wallow in despair.
• I do not compare my child’s struggles with other children’s struggles, or lack thereof.
• I celebrate our wins, whether big or small.
• We look for the positives due to Grace’s illness, and we write them down.
• We remember the original diagnoses we were given and are thankful for the lesser of the two.
• We purposefully acknowledge and appreciate the great treatments and medicine available for our daughter’s rare disease.

Although we may not be ringing that bell signaling the end of treatment for our daughter, my heart rejoices for the things we can be thankful for.

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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.