But Wait…There’s More!

While driving to Miami recently, a motion picture played in my mind about holding my daughter Jillian for the first time. Her creamy pink skin was deliciously soft and glowing. She had always been my bright light, my sunshine. We arrived at the bridal trunk show and she proceeded to try on 12 wedding dresses. Somewhere around dress 7 we found “the one”. My beautiful daughter in her wedding gown…a time of profound bliss. I watched my youngest Brittany taking pictures of her sister. Britt spent the day being so loving and supportive to Jillian. I am not sure when the gap was filled from the 8 years between them to the emergence of two beautiful young women. Of course my mind goes to the fact of my early departure due to the ALS diagnosis. I have wisdom that still needs to be imparted. This blog will be all about what has been gleaned from the experiences of my life…good and bad. Our life experiences shape the gift of our humanity. Please indulge as I write in a young woman’s book of life.

1. You are not alone – Seek support and a system of accountability for decisions of significance. Every time I had an unexpected trial God has sent an an army of angels to stand in the gap beside me. This has been true time and again for my entire life.
As a child, I was blessed with a grandmother. She taught me about the power of prayer. She taught me to pray with persistence and to be joyful in all circumstances. It was painful when my dad would go to the dark side and drink. He would say angry words and fed self doubt and fear in the entire family. Little as we were, my sister walked my brother and me across town to our grandparents home. It was like walking into paradise….a warm smile and words of love made all well with the world.
There are countless times of support that came every time we were in one of those tough situations. I can vividly remember the day my Kathryn was killed at age 21. We received the news at 4:30 a.m. By 7:30 a.m. our home was filled with friends who prayed, fed, and stayed strong when we were not able.

2. Journal your life seasons – there is so much value to breathing life into events of the day to day journey you are on. I have been journaling my entire adult life. It becomes a barometer for life…while looking back over events, you can see the ebbs and flows of strength and weakness. When it was time to leave a job I was good at but sensed its ending, I journaled for 6 months prior to be sure it was right and not just a selfish choice. After methodically touching on the different facets of the choice, I knew it was right. Placing the categories according to the what, the why, the possible consequences to my staff, families and my own house the decision was clear.
You can see what the situation was, how you responded, who was in your life and how it turned out The next trial will be easier and more hopeful if only you look back on how well you made it through. I know journaling Kathryn’s death and the subsequent three years of monthly court status checks, calendar calls, week long trial and ultimate sentencing for her killer helped me understand the next part of my story. Looking back on those journal entries reminded me that although I have a terminal illness there is nothing I need to fear. I learned a trust in the promises laid out in the bible were true. Trials begin and end, we are sent people to support, you receive abundant patience to stay calm and enjoy the ride.

3. Observe children – “Look at their halos, Miss Marianne, that’s the way God keeps track of them.” When she was asked about the halos were, Malia responded “…look they all have shines in their hair!” I never look at children without seeing their halos. Watch them at play – the way they work out their challenges, their building with blocks, the gentleness of playing with smaller things and their hunger to learn new things. Renew your joy and dance with enjoyment. Keep their silliness in your back pocket for the times you feel down. Play with water, sand and mud -they have a way of making you laugh.

4. Believe in miracles – Miracles happen every day. You cannot tell me the breathtaking sunrises and sunsets are not miracles. You cannot tell me a baby’s first cry as it emerges into the world is not jaw dropping miraculous. Never a day goes by that we don’t see glimpses of raw beauty in this world touched by the hand of God. I prayed hard for a miracle to cure the devastating disease that I have been given. My miracles came, not through cure but in the day to day way friends and family come willingly to take on the tasks we would have been doing easily otherwise. Miracles also happen through my kitchen table and the love spoken that might have been otherwise too late.

5. Serve generously every chance you get – a friend wisely told me if we accept help it not only helps us it blesses the person giving. Many times we feel helpless when there is loss. The loss of a home, a broken heart, financial ruin, and the sudden diagnosis that monumentally changes a life would all need someway to be addressed. Think of a way you can meet a need and don’t hesitate to jump in with both feet.

6. Be balanced – There is value in downtime – when I was first diagnosed with ALS I noticed that if I was active one day I had to lay low the next. Even Jesus had to get in the boat and sleep for awhile when He was heavily engaged in speaking. There is no place in a life for anyone to be busy all the time. I can remember signing my children up for every one of their waking moments to “keep them out of trouble”. They had no time to sit and be quiet. It was a tough thing for us all to learn to just be still.
Being on a rats treadmill only destroys your spirit and leaves little energy for holding hands or wiping tears. Little things that would get overlooked in a busy persons vocabulary. I find the sweetest memories are floating in a pool of cool water or just hearing the crash of ocean waves to be the stuff that healed my heart.

7. The wisdom of the widows treasure- in the Bible there is a story of a woman putting her two coins in the church offering and people making fun of her. Jesus responds by saying she gave everything she had and that was enough. I have been given this blessing of ALS and through it learned about generous giving… Giving it all. There was a woman who came to my home to bring me dinner. She not only brought me dinner but felt compelled to bless me with an envelope of cash and said God told her that she should do it to repay a kindness I offered her 15 yrs prior. I was blown away by her remembering it. I just did it without thinking it would pay me back in such a beautiful way. At the time I was a director of a church run preschool. They were down on their luck and I saw the need and offered for their children to come to school for free. They needed to work and keep their children safe so for me it was a no brainer. It needed up to be such a good investment in my future.
Generous giving means investing in the future and really has very little to do with money. It’s all about giving your all to whatever you choose to see as important.

8. We only get 24 hours at a time – as a child my wise grandmother always said “that’s why God gives it to us in 24 hrs and then it’s a whole new day”. That has resonated with me over my entire life. There will always be times of mountain top joy and ominous darkness but the point is, it ends. When a situation that you’re immersed in is tenuous and unending for long periods of time it’s a time to stretch and grow. Times in the valley are just that, beautiful and peaceful. I wonder why they call these times valleys?

9. Enjoy what you have while you have it – things I took for granted like wiping my nose or feeding myself has now become the task of others. There are so many things that I did at one time and now cannot. Enjoy times of learning and being alive. Breathe in fresh air and forgive easily. Life is way too precious to hold on to every wrong that has been unjustly cast upon you.

I could probably write for another couple of miles but holding these thoughts in your heart will bring you peace and lead you to a blessed life.



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