The Story of Ellyse Kaye Sanders
On May 28, 2005 an angel came into our lives. She was absolutely perfect and we named her Ellyse Kaye. Her sisters and brother adored her and the joy that we all felt was truly amazing. That joy quickly turned to fear when, at two weeks of age, Ellyse began having seizures. We were sent to DeVos Children’s Hospital, which is where our journey begins…
That first hospital visit involved a CT scan, EEG, MRI/MRS, spinal tap, and many blood tests. I remember looking at her tiny body laying in her “nest” in the bed and thinking, “She looks so perfect, how could anything possibly be wrong with her?” Each test came back normal and we were beginning to feel reassured that she would be okay until the neurologist walked in with his assistant and said the phrase that will forever echo in our heads, “Not conducive to life.” He was explaining one of the possible forms of Mitochondrial disorder that they were beginning to think she had due to an increased lactate level in her brain. I didn’t hear much that the doctor said after that phrase, I kept asking myself, “Did he really say that?” When the tears started rolling down my face, the doctor said he would give us some time. I looked to Todd and asked him if he really said that terrifying phrase. I could tell by the look on his face that he did indeed state that this precious angel may not survive this. At that point, I refused to put Ellyse down and the only time I wasn’t looking at her was when I blinked. But, with three other children I soon realized that was crazy and after two days I finally put her down. However, I also realized that life would forever be different. I would look at Ellyse through different eyes, my prayers would forever be changed, and my appreciation for life would never be the same. Even with all of these changes, it will be OK - when I look at my beautiful angel, I know, it will all be OK.
3 years later…
As I lay here cuddled with you in my arms,
I knew this time would come.
You have shown us strength and hope many times,
Despite how physically weak your body is.
Your breaths of life are fewer and achieved with such effort,
Taking so much that, at times, you stop.
I knew, that one day, the time would come.
But I look at you and cannot let you go.
There is no easy way to say “Goodbye” to a child,
No matter how long you have known the time would come.
I still pray for a miracle,
I pray for you to open your eyes again, or better yet, a smile.
I know your life is a part of God’s plan,
Some day it will be clear.
But I’m still not ready, I want to hold you near.
I lay with you in silence as long as I can.
In the silence, as I watch you,
God speaks these words to me:
“Dear child, you knew that this day would come.
You have been so faithful and loving and have shared My love with many.
Keep the love in your heart and she will never be gone.
Your work is done, it is my turn.
Be at rest knowing that she is in my arms now.
In time, you will see her again in this glorious place she will now call home.
You have cared for one of my Angels, you have done well.”
I knew, that one day, the time would come.
That time is now.
Sunday, June 1st 2008
Ellyse is now in Jesus’ arms
Ellyse had an amazing impact on our family, friends and even strangers during her short time with us. Through our blog at www.caringbridge.org/visit/ellysekayesanders we shared our struggles, our triumphs, our tears, and even a few laughs. But most of all we shared a story of an angel who taught us faith, perseverance, and purpose.
After Ellyse passed away on June 1, 2008, we wanted to keep her spirit alive and continue to impact others through her story. As a result, a group of family and friends are working to establish The Ellyse Sanders Family Foundation. A part of our work is establishing the “Angel Sib Scholarship” which we will award to a high school graduate who has lost a sibling due to a terminal illness. Candidates for the scholarship only need to be seeking some sort of post high school training or college degree.
Why create such a scholarship? We decided to create the schoalrship because we recognize the financial impact of caring for a terminally ill child. Many families need to borrow from college and retirement savings to help cover medical bills and, ultimately, funeral expenses. We also recognize the sense of “normal” that is disrupted for siblings of a terminally ill child. Sisters and brothers of a terminally ill child sacrifice time with parents, the opportunity to “bond” with their sick sibling, and they too may feel the financial burden of having a sick sister or brother.
The “Angel Sib” scholarship is essentially ”a gift” to a sister or brother from their “angel sibling”. It is a “Thank You for loving me for who I was, and all the care the I required. Never forget me, or the lessons you learned because of me. Take what you have learned and seek your purpose and make an impact on others. Wherever you go or whatever you do, Never Forget me and the time I shared with you.”