This view… like a metaphor for my life.

As I sit on this beautiful beach at 43 years and 2 days, I look out at all its beauty — the gorgeous waves, crystal blue water, and white sand. I see the red flag stating danger, but you look beyond it.. the view is so much more enticing, and your eye goes there.

Do you notice the dark clouds looming overhead?

If you are like me, an eternal optimist you don’t give thought to the clouds, you focus on the beautiful ocean, the waves crashing at the shore, the way the sand feels on your feet. Even as the rain sprinkles down… you close your eyes tight to truly focus on the beauty around imprinted in your short term memory. You will the storm clouds away, for even one more moment to enjoy the beauty for one last second.

It’s full on raining, and you surrender, for just this moment…pack up and head back for shelter where I find myself sitting once again, surrounded by beauty. The storm rages on the outside, but the walls of my resort keep it out; I can’t see it or hear it, so I move on, focused on the peace and beauty that now surrounds me, inside the walls of my shelter.

I stand on my balcony looking at the waves crashing, the palm trees blowing wildly, the rain and the dark looming clouds. I’m surrounded by darkness; there is no hope in the sky today. But yet, I continued to walk out multiple times through the afternoon, looking for a glimmer of sunshine behind the storm.

From the outside, and even from my perspective, I have a very blessed life. A wonderful husband of nearly 20 years, 3 beautiful and kind boys who continue to chose to be giving and share love above all else (which for me are the greatest of all traits); an amazing job and co-workers who are smart, talented and purposeful, leading 2 amazing non-profits and carrying on legacies created well before I came into the picture; we have made a home in an incredible, absolutely amazing community. I have the most wonderful friends a girl can ask for; my brother and sister and their families are all that are left since my parents passing, are strong and loyal to each other.

Wayne and I can provide our family with basic needs and some luxuries too… this in itself is a blessing.

I have HOPE, an effort that truly showcases the beauty of the giving families of our community. HOPE,, is the spirit of philanthropy in our community. A grassroots effort started by friends at my breakfast table 10 years ago to save my son Will from an eminent fatal condition. Today, $7.5 million raised and on the verge of the most promising discovery in the history of this disease, we sit and wait in faith for a trial. The people who make HOPE happen personify beauty rising from ashes.

This leads to the lingering storm in my life. Batten. You see even through the prayers, my spiritual music, the smiles on my beautiful boys faces, the thousands of volunteers that support the three organizations I’m so privileged to lead, The Inspiring quotes and posts, the desire to serve as many people as possible everyday, the applause from the stage of an event to the most intimate moments of praying for my Will while I cradle him after a seizure or squeeze him tight every night attempting to pull the disease from every cell of his body and take it as my own… Batten and the future of Batten looms. It is in every smile, in every triumph, in every victory and settles deep in every defeat.

A degenerative disease is either roaring its ugly head or lurking in the shadows; it is a constant storm in the distance. Sometimes pouring rain and thunder in your direct path and other times off In the distance intimidating your every move.

I often think of how my Will will be in 1, 2 or 5 years. And I have to stop. I realized many years ago, like tomorrow the forecast can be wrong. No one truly knows the outcome other than God, and it is in his faith I will trust.

When we arrived on my birthday getaway on Friday; the forecast was doomed, thunderstorms through Mon morning; when the sun was expected for a bit… just as we should be heading to the airport. But this morning on 43 years and 3rd day on the Earth, I wake up to the unexpected sun. The bluest of skies and SUN! Yes, the dark clouds are looming on the horizon where the water meets the sky… but the sun is brighter.

On this most gorgeous unexpected sunny day on the beach in Mexico, I felt compelled to share a reminder that only God is truly in control. He can take the most deathly of storms, the evilest of circumstances and make the sunshine, take away your despair, minimize your fears and make you believe anything is possible.

I take this sun today as a symbol. That God hears my cries, my prayers, my hopes, and my dreams. I promised. As I felt his presence, I would share his good word and faithfulness to all who will listen.

When all is beautiful on the outside; but dark on the Inside; The Lord sees. Seek comfort in knowing you are never alone. Keep believing, doing good things and watch him work. He will amaze you with his presence.., be open to listening, be still and thank you for helping me always believe in HOPE!

3 thoughts on “A Metaphor for My Life

  1. Missy, God has blessed you with Such a talent of expressing your most profound thoughts with so much love and appreciation. I trulY enjoyed reading your blog. Love you and your strEngth God has blessed you with.

  2. Loved reading your bLog. God is in complete control and we will continue to trUst in his plan. Will and your family are always in our prayers. Love to all.

  3. Beautiful words from a beautiful soul. What you are doing for will and all who battle battens is the subshine you feLt on youR last day—IT is hope! We are all cheering this trial on for will, for battens and all the other diseases it will help. You are an inspiration!

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