Realigning My Perspective to the Important Things in Life
Social media comes with a lot of pros and cons. One of the positive aspects of Facebook, in my opinion, is the memories feature that sporadically pops up.
I love it when long forgotten memories pop up in my feed. The Christmas list from my 10-year-old daughter asking for a taser. Videos of my little ones, who now are teens and in their 20s. Ordinary days captured in pictures. Such sweet memories of a life well-lived.
Facebook recently reminded me of a sweet memory from long ago of my little ones racing up and down a Slip ‘N Slide at our home in Singapore. Hearing their voices and seeing their glee as they race around the yard brings me such joy.
As I rewatch these memories I feel torn. On one hand, I feel so grateful for the time we had when all of our children were healthy. They ran, played, and frolicked in the backyard. We lived all over the world. We traveled and explored and had high adventures.
On the other hand, these memories bring some sadness. They act as a reminder of what we have lost. When our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at the age of 14, it seemed the days of bike riding, swimming, and hiking quickly slipped away.
I am aware that some with LEMS do get to experience these things again, and I hold on tightly to that hope. But some days I can’t help but grieve the physical abilities Grace has lost.
However, once the grieving subsides, I am renewed by the restoration I see in Grace’s life, such as her ability to work and go to school. She is learning to drive and increasing her strength every week with physical therapy and exercise.
When my children were young, I needlessly worried about so many trivial things — material possessions and the right schools, people’s perceptions and popular opinion. When you have a sick child, suddenly everything within your peripheral vision falls from view and your eyes focus intently on what is most important.
When I look back, I realize Grace’s diagnosis helped align our perspectives to the more important things in life.
I am so grateful for the time we had as a family before Grace got sick. I cherish these precious memories. But I believe I have a healthier perspective of what is important in this life because of her illness.
What matters is faith and finding a source of strength. I know full well the importance of family and tribe, those who stand shoulder to shoulder with you when you receive the worst news a parent can get. I recognize the importance of teaching our children values like honor and integrity, respect for all, compassion for the sick, and generosity without strings.
Our life now holds a richness I had neglected when all was right with the world. We are not burdened by mundane worries, which isn’t to say we don’t worry or fret. When you have a child with a chronic illness, of course you worry. But now, we see life a bit more clearly. We know what is worth the worry and what is worth letting go.
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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 syndrome.
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