Through the Eyes of Sanfilippo-a grandmother’s perspective

Joan, Justin’s mom, is one of my heroes. She embodies Christ-likeness in so many ways that I admire, and although she has wise words to pass on, what moves me so much is her patience, abundant availability of grace, and her amazing strength. Thank you, Joan, for modeling what it looks like to be a humble servant of Christ in the way you live your life.

here is a piece she put together for an umcoming event at our church speaking to grandparents:

Through the Eyes of Sanfilippo

In 2006 we became grandparents for the first time. Jayden Alexander would enter our family, stealing our hearts from the moment he was born. Three years later in 2009, Jayden’s little sister would be born. Brooklyn Kayelee would also bring much joy into our lives. But 3 months after Brooklyn’s birth our lives would drastically change. Sadly, Jayden and Brooklyn would both be diagnosed with a rare genetic disorder called Sanfilippo. We would learn a lot about this disease in the next few weeks. We would learn that there is no cure or treatment and that Jayden and Brooklyn will only live into their early teens. We would find out that they will eventually not be able to walk or talk. And in the final stage of this disease they will need to be fed through a feeding tube.

Those words would not be easy to hear and those words would change our lives.

Grand-parenting children with a terminal illness and with special needs, is certainly not easy. It is often extremely challenging, but I’ve learned so much about myself and my relationship with God that I would never have learned if it wasn’t for my 2 grandchildren and Sanfilippo. As I have slowly come to grips with Sanfilippo, I am learning to find joy in the simple things. When I look into Jayden and Brooklyn’s eyes, I see so much love. It’s often that I find great joy in a giggle and a grin. It’s spending time with them just doing ordinary life, like feeding them, wiping their dirty faces, changing them, giving them a bath. I love watching them smile and laugh at Bob the builder and sing or dance with Barney. Often we find joy in taking them for a car ride to get them their favorite treat like chicken nuggets or ice cream.

I am reminded every day that life is still about hope, love, grace and change. Who’s to say that a short life isn’t a good life. I see God showing up in the hard places of Sanfilippo. I’ve had to slowly let go of their future, which was something that I wasn’t prepared to do. But I’m learning to invite God into the everyday moments whether chaotic, crazy or simple and ordinary. When I look through the eyes of Sanfilippo, I’m often at a loss for words and wonder how to make sense of this new world we live in. But I’m seeing the hand of God at work in my life now more than ever before. I know now that God has invited me to experience His grace. I just didn’t know that it would look like this.


Thank you, Ama, we are so blessed.

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