The logistics of traveling with Nick has gotten more cumbersome as his Lennox-Gastaut Syndrome (LGS) progresses. However we all love traveling and the extra effort is worth it. After the LGS conference in Orlando we stayed on a few days. We went in the hot tub, out to dinner, visited friends, but the thing that Nick wanted to do each morning was sit in the screened patio and watch the kids play in the pool. His comment, “This is the life!” says it all.
Everyone has challenges in their life. The key is to look for the good moments and then hold on to those memories. Pictures can help remind us, and writing in a journal is helpful. Another idea is to keep a gratitude journal. This might be especially helpful, since for Americans, November is our thankful month. It is also National Epilepsy Awareness Month. That is a little ironic to me. The one thing that Arden and I have said many times during Nick’s life is that we could easily handle everything else, if Nick just didn’t have seizures.
The journey recently for me has been to find things to be thankful for within the experiences of uncontrolled seizures. This has been hard, but here is a short list of some of the blessings for which I am thankful.
People, often strangers, are kind to us and offer to help.
Arden and I are closer as a couple as we work together to care for Nick during those extreme moments.
I have met and grown to love other parents who have experienced the same issues with LGS.
I have compassion for others as they support their family members with a rare and debilitating disease.
Those hard days have shown me with pinpoint focus what is truly important in my life.
These are a few of the blessings I’ve noticed and you probably can think of more that you have received as you courageously face your own struggles. Lets learn to be more grateful, especially this November, the Thankful Month of Epilepsy Awareness.
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