Her name is Ashlynn Noel and I have known her since she was born, 20 years ago at Christmas time. She is also known by nicknames like “Baby Girl”, “Princess” and “Angel Girl”. And every single one of those names are fitting. But to me, she is my special friend.
As a little girl, she was very, very smart. So smart that we would marvel at it and wonder where that intellect would take her someday. Being a girl after my own heart, she was always dressed so cute in her frilly dresses and curly hair with bows. She was always sweet and even tempered and silly and playful. She had a smile that would light up a room. And was always boy crazy!!
Today, Ashlynn is a very different person. Little did we know back then that hidden deep in her DNA was a deadly genetic disorder called Batten Disease, or as we un-affectionately call it, the Batten Monster. A ticking time bomb that would lay dormant, at least for a little while.
She started having vague symptoms at the tender age of 7, primarily problems with her vision. At first she was diagnosed with a particular type of blindness called Stargartz. I remember being devastated when we were told that. Now, I wish that was all it was. Not that blindness isn’t a big deal. It’s a very big deal. But not as big as the Batten Monster. Four years later, at the age of 11, there was finally a correct diagnosis.
Her vision impairment turned to blindness. Then seizures came along. Then mental regression and physical impairment… think Parkinson’s and Alzheimer’s but instead of an elderly person it is stealing the mind and body of a beautiful young woman. Today, this sweet Princess cannot see or talk or eat or walk. She is an adult with a toddler’s mentality. And she is dying. I guess when I think about it, she has been dying since she was born. And yet somehow it feels like it’s all of a sudden.
I totally get that disease is a result of the Fall. I know and have seen in Ashlynn’s life that God really does make beauty from ashes. I see how He has been glorified throughout all of this. Maybe someday I will tell you all that God has done through this amazing young woman. So many stories run through my mind. But there is one thing in particular that plays on repeat in my thoughts…
You see, there is one thing I haven’t told you about Ashlynn. The greatest thing, really. Ashlynn is truly, madly, deeply in love with Jesus. Since infancy her parents and grandparents have sung to her about Jesus, read to her about Jesus and taught her scriptures and bible stories about Jesus. She has loved Him since the very start. Even now, even though her mind and body don’t work anymore, her spirit is strong. As you can see in the picture above, somehow, someway, her spirit still responds to Jesus. Anytime we pray. Anytime we worship. Anytime we sing a hymn, her spirit responds, despite her physical and mental limitations.
There are many things I have learned as I have watched this precious girl valiantly fight this wretched disease. But the greatest lesson of all is that the love of God is really all we have going for us. And the love of God is all we need. I think if Ashlynn could say that, she would. And she would say it joyfully. We may receive the worst diagnosis. We may lose all our money. Relationships may come to an end. The world around us may crumble. But the love of God never fails. We can lose our health or all our worldly possessions, but we will never lose the love of God. It’s the one thing that always remains. It is our greatest comfort and greatest treasure.
For me, Ashlynn is living proof of the proclamation of the Apostle Paul in Romans 8:37-39…
No, in all these things we are more than conquerors through Him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.
Even though disease has taken over, it has not won. No, today, laying in that hospital bed, Ashlynn is more than a conqueror. Why? Because nothing, not even the Batten Monster can separate her from the love of God. After all, if He is for us, who or what can be against us? Oh my friends, may we always remember, His love really is all we have… and all we really need.
*The above picture is of our beloved Ashlynn Noel who although in hospice, still worships her King!
** For more information on Batten Disease or to donate money for treatment and research go to http://bdsra.org/