Today in the car we were singing along to an ’80’s station on the radio. Then Kool & the Gang’s hit song “Cherish,” came on. Nick loves this song. It was very moving to hear him singing along with the chorus,
“Cherish the love we have
We should cherish the life we live
Cherish the love
Cherish the life
Cherish the love
Cherish the love we have
For as long as we both shall live.”
The lyrics really spoke to my heart and I have thought a lot about them today. It is often very hard to decide to cherish the life that we are living when we are facing difficult things.
I realized that making the decision to cherish the love and the life we live has made all the difference in my attitude and reaction to my life’s experiences.
I belong to a closed Facebook group of over 3,300 members for people and their families who are affected by Lennox Gastaut Syndrome, or LGS. It is the syndrome that Nick has. LGS is a form of severe epilepsy that begins in childhood. It is characterized by multiple types of seizures and intellectual disability. People with Lennox-Gastaut syndrome begin having frequent seizures in early childhood, usually between ages 3 and 5. Caregiving for a loved one with this disease can be difficult and some of the posts on this page are often heartbreaking.
However, this afternoon I was following a thread on the LGS group page that was different. Yesterday one of the other moms had asked members of the group to post pictures of our kids amazing smiles. There were hundreds of pictures posted over the past couple of days. Kids of all ages, every one of the pictures was so beautiful and inspiring. Their smiles were contagious. Nick and I spent over an hour looking at the pictures while I told him the persons name and other information that was posted by their parents. I had posted a picture of him, so he saw that one but then he told me, “We need bof of us smiling Mom.” So we took a picture and I posted it. He was thrilled. It is moments like this that I cherish.
Many of the parents expressed that they loved this thread on the page because of all of the kids smiling pictures. They were very uplifting and really helped create a sense of community among everyone. One mom wrote that she felt so supported and comforted, as she sat with her child in the hospital ICU battling the effects of this illness.
We do need to cherish the life we live. Even the things that are hard to do, can bring sweet tender moments of joy. Has this happened to you? I would love to hear about your experiences.
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2 Comments
This is fabulous, Eva! In a world with so much sorrow, we need desperately to see smiles!
I loved that thread. That was such a brilliant idea to do. Even though this diagnosis sucks, we can still see the joy in our warriors as they battle this unfortunate disease. It’s always nice to know we’re not alone.
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