I was on the floor face down next to my son. As I wrapped my arms around him we both sobbed.
We had just received the devastating news that both his children, my grandchildren, were diagnosed with an unbelievable diagnosis.
One with which you would say, this can’t be our lives.
This can’t be our future. Wake me up from this terrifying dream.
The year was 2009 when our daughter-in-law Stefanie would bring Jayden our first grandchild who was 3 at the time to his regular yearly pediatric visit.
His doctor noticed a couple of things that didn’t seem to make sense. He suggested she take him to see a geneticist at Lurie Children’s Hospital in Chicago.
She thought it was an odd suggestion but said ok. That was October 2009.
The geneticist that day gave her some news that would shake our faith to its core. He said your son has mucopolysaccharidoses. MPS for short.
These words were foreign to us. I wondered what language he was speaking. We would soon learn what those words meant.
Jayden had MPS 3 Sanfilippo Syndrome Type A.
Not only was Jayden diagnosed, but his baby sister Brooklyn 3 months at the time was also at risk.
A few agonizing weeks later we would find out – she too had Sanfilippo Syndrome.
Both of my grandchildren would live only a short life. The average life expectancy was 10-13 years.
They would soon regress in all of their abilities to walk and talk.
They would never be potty trained.
They would need a wheelchair and a feeding tube at the end of their lives.
It seemed to us doubly painful. Not only would we watch our grandchildren struggle in their broken bodies, but we’d watch our son and daughter in law walk a very painful new reality.
To view your children struggle and suffer as they wait for their children to slowly die instead of growing and thriving.
There were no words. We were devastated.
Beyond broken was our new mantra. That is the honest brutal truth.
But God would begin to teach me that it’s in the brutal reality of our circumstances that He resides.
We would see beauty in the broken and difficult places. Jayden’s and Brooklyn’s lives would change us in ways we would have thought impossible.
They taught me to focus on the moments we had together not the moments we weren’t going to have.
They would show me through their smiles, their laughter and their hands clasped around mine that God was doing amazing work in our lives.
They were beautiful lights in a very dark place.
They would teach us without words that their presence in our lives was a gift.
I was one of the lucky ones. I got a front row seat. Not only did I help with babysitting and respite, but we also lived right next door.
God knew what He was doing. Although there were moments that I thought just the opposite, he would remind me of His faithfulness and grace on every turn.
November 2017 Jayden went to be with Jesus. His light was shining brightly as he shed his broken body. His light is still shining.
Brooklyn would take her last breath in August of 2018. Just nine months after Jayden.
Their lights continue to shine like beacons for us. And for so many who knew and loved them.
We sang at Brooklyn’s memorial service “this little light of mine. I’m going to let it shine” a simple truth but yet so profound.
Their bright lights were forever going to shine. They taught us without words truths that we wouldn’t have learned any other way.
So we now graciously pass their story on. They still are teaching me that they are alive far more than ever in this life.
The last year and a half have been challenging to say the least.
But I realize now that we were given a tremendous gift.
We were the blessed ones, and I saw the beauty that God delivers from the ashes of our suffering.
We still mourn. I know that will never change. But we celebrate their lives. Because we were given a gift.
A beautiful gift of grace and love.