We have been feverishly preparing for our annual fundraiser, A Fifth Season on Nov. 7.
It didn’t seem to matter when our dear friend called us last week to tell us their Ethan had left them. He has flown off to greater heights and peaceful days wearing his angel wings, where there is no sadness or sickness. There is only serenity and Hope.
Ethan lived a challenging, yet beautiful life, teaching us that his blessed soul had a purpose here- to light and lift those around us. He was a friend to Bridget, Noah & Laine and to us. It is so difficult, yet simple to imagine what Julie, Alan & Nolan are going through. In fact, I think of them every other minute. I understand their grief and wonder what the next moment will bring to my family and my emotions. The Gahlbeck family was the epitome of love and grace and I only aspire to be half as together as they are.
I am including the speech I gave at A Fifth Season last year as it seems somewhat appropriate for this day.
Just a couple weeks ago…I sat in church thinking about what I could say to you all here tonight. (at least it seemed like a good place to get inspiration)
It was the celebration of all souls- remembering all those who have gone before us. There was a beautiful display of candles in remembrance of those that passed. The shine from the candles just radiated light and mesmerized me.
On that evening, I stopped to think of our situation. Despite the abundance of tranquil light, I realized the grim reality of it all- for ALL of us, but especially if you are a parent of a child who is sick…with Batten disease. It’s easy for us parents to get caught up in the hum of our everyday lives. The days can often blend into one another when you are caring for a sick child(ren). It is not easy to distinguish one stressful moment from another.
Was that them coughing in the night? Did I get the food ready on time- did my child have breakfast, lunch, dinner? Did they go to the bathroom today- how many times? Were the 5, 10, or so medications administered correctly and on time? Do we need to try something different? Are the seizures under control? Did someone charge the suction machine? Who’s coming for services today? PT, Bath aide, our hospice nurse? Should I send my child to school? Are their lungs clear? Are they fever free? Is it time to call the doctor? Should we go to the hospital? Is it pneumonia?
Did I take a shower????
Looking at the candles lit at the church the other night, I was fixated on our mortality. So many little things to worry about in our everyday lives- and we get caught up in the little questions. I don’t even ask the tough questions anymore-
Does my daughter/my son know how much I love them?
Do they remember the many experiences they had before they got sick?
How will we carry on when we experience their loss?
Even though I can’t answer those questions- I sat in the church pew squinting as I looked at those candles. There will always be that flicker of light in our lives. And we call it HOPE. As a big brother once said, “Remember, hope is faith and faith is believing that something is going to get better.” And it will, we must believe in that. Why else would we continue this fight against Batten disease?
I will leave you with one final quote tonight…“God lit a candle of hope for each of us. It’s not waiting in a window somewhere, or around the bend. He lit it right inside us- so that we need not ever live one moment without it.” Vickie Girard