Friday, October 17, 2014


[Blog entry created by Mark Bonnema]


That is one of our endearing names we use for each other. It usually evokes the tone “I have something to tell you, but please don’t be mad.”
In this case, the something Ashley wanted to tell me was that she had lost her wedding ring. She continued, saying, “I’ve checked each of the twelve places I usually leave it…”  Yes, that’s right… TWELVE places she may leave it throughout out our house. From the old phone cubby, to the soap holder, to the actual jewelry box, to the shelf next to her meds, to the top of the dresser and bedside table … a search of all the usual suspect places came up empty.

“Well, I am sure it will turn up eventually,” I said.

Eventually turned into weeks, and then months. Finally, a thorough search of the entire house was underway… still we could not find her wedding ring.

Luckily we had insurance. A couple calls to the agent and a few more to the kind, wonderful associates at The Diamond Room by Spektor, and Ashley’s ring was being refabricated with improvements. Lost, but not irreplaceable. Sure, the ring is not the original, but you would never know looking at the new one.

Perhaps you realize this, perhaps this is new news, but this is typical of Ashley. This is who she is. Things are prone to being misplaced in her world. This trait is part of what makes Ashley’s character. Its part of what I love and what drives me crazy at the same time. Bless her heart, if she loses the keys one more time….

Here’s the thing. Most objects are replaceable. It may be a nuisance to replace a set of keys or a wedding ring, but things and objects can be replicated and or replaced. Ashley, however, is anything but replaceable. There is no other Ashley, nor will there ever be another living, bravely breathing person with a heart and soul just like hers. She is unique in every way.

I cherish and adore every breath that she takes, realizing that the gifts of breath and life are a fleeting privilege, one all too real for Ashley.  What would I… what would we (including you, the reader) do if we were to lose Ashley? Who and how would that void ever be filled in our lives? We could search the whole world and never find another soul to replace the beautiful, brave soul that she is.

There is no insurance policy that can offer to replace or replicate Ashley. The closest thing we have is YOU.  That’s right. You are Ashley’s best chance at survival, longevity, and a continued chance at living passionately and bravely, bearing her soul for all to see.  When you support the Cystic Fibrosis Foundation, like so many of you have done over the past few weeks and months, you provide funding to support research. The research is getting close! For the first time ever, drugs are being delivered at the genetic level that are allowing persons with CF to live symptom free! CF no longer rules their lives. It no longer robs them of the gifts of breath and life. It no longer threatens to steal our loved ones away. But the new drugs only work for a select few persons with specific genetic defects. More research and development is needed to extend the benefits of these life-saving, disease CURING drugs to all persons with CF.

Understand now? YOU are part of Ashley’s insurance policy… the closest thing we have to keeping her heart and soul here on Earth with us for as long as possible by funding research that can –and we believe WILL save her life.

Ashley will go on losing things. It’s inevitable. We will continue to replace them as the need arises. But we cannot afford to lose Ashley. She is irreplaceable.

Have you paid your insurance premiums? Know where your wedding ring is? More importantly… how have you shown that you cherish that which is irreplaceable in your life?

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