Ellie Mae, 6-yr-old Batten’s Angel, 5/07/15
I received this post on Facebook today from Ellie Mae’s mother, “Ellie Mae passed away this morning aged 6. We have known for a week or so she had not got long left. She passed peacefully in our arms. We are heartbroken.”
No matter how many times I hear that another child has died from Batten’s Disease, my heart just breaks all over again for them and for us, remembering our own loss 15 months ago. Children who were born healthy and who were on the same levels as their peers, many even ahead of them for a few short years, until the Batten Monster started taking them away a little bit at a time. Parents who had hopes and dreams for the sons and daughters they’d been blessed with. It all comes crashing down with that one word diagnosis “Batten’s”, but you think that your child will be the one they will find a cure for, the one who finally beats it! As the years pass and their vision worsens, you believe that blindness doesn’t have to be a death sentence. After all, they are learning Braille & cane travel, keeping up with their sighted friends. Then they have that first seizure, and then another, until they are on medication that works for awhile, but seems to take away something of their personality. When their speech becomes harder and harder to understand, that fear wraps itself around your throat until you can barely breathe, and you begin to look for more signs of regression until finally when they can’t remember how to eat with a fork, when they can only walk a few short shuffling steps with assistance, and they can no longer even sing along with their favorite song, you know. You know that Batten’s is winning, and it’s only a matter of time before those words you’ve only read and kept hidden in the dark recesses of your mind, will begin to manifest themselves; “dementia, feeding tubes, bedridden”, things you can’t even bear to think about, let alone speak of. This child’s body that you gave birth to is slowly shutting down, and you want to hold onto them with everything that’s in you! That’s when you have to do the most difficult thing of all; a tremendous act of love where you open your heart to God and gently let them go into the arms of the One who created them.
The following is a poem I wrote for every parent that loses a child to this horrible disease, and I share it with them when their child is finally released from this world’s pain to fly with the angels to their heavenly home.
Although we don’t know one another,
We walk the same road,
Though we’ve never met,
We carry the same load
May God hold you in His arms,
As I hold you in my heart
I want you to know that
Your loss is tearing me apart
For I also know the same pain
Of saying good-bye to my own child
As our loss has become Heaven’s gain
I believe there’s a special place
For children such as these,
Where they can relive their childhood,
Free of Batten Disease
They will see the beauty of that glorious place
With eyes that will never be blind
They will speak the language of the angels
In a clear voice with a sharp mind
The legs that once were unable to move
Will walk, and jump and run
Our precious children will once again
Know the meaning of “fun”
When we meet them at the Pearly Gates,
They’ll say, “Where’ve ya been?”
We’ll forget the pain we’ve known here on earth,
And we’ll live with our loved ones again.
There will be no more tears or good-byes,
In that eternity waiting beyond the skies.
So, fly away, my child,
Hold onto God’s hand!
I’ll see you soon in that world
That has no end!
By Debbie Dovel
In Memory of my son, Chad