This summer I learned to value life more fully
Navigating grief reminds me to appreciate our life, LEMS and all
The other week, we were once again at Wolfson Children’s Hospital in Jacksonville, Florida, for my daughter Grace’s Rituxan (rituximab) infusion. For the past two years, Grace, 18, has received infusions every six months to help alleviate symptoms of Lambert-Eaton myasthenic syndrome (LEMS).
It’s taken some time to get used to our hospital visits. I’ve struggled with the reality that Grace cannot walk inside from the parking garage. The first time I pushed her through the hallways in a wheelchair was sobering.
Infusion days also serve as a stark reminder of the fight Grace has had to handle at such a young age, often leaving me overwhelmed by how much her life has changed because of her rare disease. Because LEMS is a chronic illness, Grace will have to cope with the symptoms and hindrances all her life, short of a miracle or major medical breakthrough.
Despite all the difficulties, I highly value Grace’s life and believe that every day we have together is a gift. As we pulled into the car park recently, however, I was overwhelmed with a new appreciation for her life — both the struggles and the wins.
Grief changes our perspective
You see, over the summer, I spent weeks walking the halls of the children’s hospital with my youngest daughter, Bethany. But instead of the day hospital, where I usually take Grace, we were in the intensive care unit.
In early June, Bethany was with one of her closest friends when he had an accident that left him hospitalized. Bethany visited her friend often over the next few weeks, but at the end of June, I received the phone call I was hoping wouldn’t come. Bethany’s friend wasn’t going to recover from his injuries.
It was time to return to the hospital — this time, to say goodbye.
How can life change so permanently in an instant? How could a young, healthy high school student face such tragic circumstances?
Grief up close and personal is heart-wrenching. It shifts your world’s axis, and everything becomes shrouded with a dark veil.
It also has a way of putting things in perspective. Whether we’re healthy or managing a rare disease, none of us knows how long we have on this earth.
Count it joy
Today, I count it all joy to be with my loved ones each day. I know the value of a kiss goodnight. It’s a precious thing to hear my kids’ laughter echo throughout the house.
LEMS doesn’t devalue our experiences; it heightens them and makes them more precious. We’re gifted with the awareness not to take life for granted.
Indeed, some of us struggle physically more than others. We all face trials of many kinds. However, the uncertainty of life shouldn’t make us fearful. Instead, it should motivate us to appreciate what’s before us. Embrace the experiences offered us today. Invest in those around us. Pursue friendships. Be intentional in our words and actions. Encourage others walking a similar path.
We’re privileged to have this day; let’s use it all 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.
About the Author
Comments