A couple of weeks ago I was sitting and thinking. Which sometimes happens far to often than I’d like. My mind wandered about my life and our life with our son Noah. Noah is 8-years-old and has 15q 13.3 microdeletion syndrome. It’s a fancy way of saying he’s missing part of a chromosome. You may be surprised how intricate our genetic system is and how being off just a little can wreak havoc on your system. I knew from around 9-months-old that something wasn’t right with Noah. Of course well meaning people told me that I worried too much and that he would eventually hit those milestones.
He didn’t hit any according to any typical schedule.
After the seizures became more and more frequent, our search for answers became more and more demanding.
Getting the news that Noah really did have something wrong was more of a relief than anything else. But it’s come with years of feeling lonely, scared, angry, depressed, hopeless and some days actually ok with his fate. But it’s been the hardest thing I’ve ever gone through. Just writing about it now brings tears shadowed by years of mourning.
Sitting in my living room a few weeks ago I was thinking about our journey and how despite feeling so alone sometimes, I knew that there were other parents in my community who felt the same way. I knew that they do were spending hours a week between therapies and doctors visits. They were counting pill bottles making sure the refills were requested and hopefully get through their IEP meetings with as much ease as possible.
Caring for a child with special needs can be life consuming. The days you thought you would spent at soccer games and gymnastics were suddenly filled with speech, physical therapy, personal therapy, and who knows what else. These parents spend their lives advocating and making sure their children are reaching their potential while they personally give up long hot showers and girls nights at the movies.
But…they still have a voice.
They still have something to say.
So I asked the community and they responded. They responded big.
Why name it “the works of God displayed”?
I struggled a lot asking God what we did wrong. Were we being punished? It’s a pretty common question.
But the Bible has an amazing response.
“His disciples asked Him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “Neither this man nor his parents sinned, but this happened that the works of God would be displayed in him.”–John 9:2-3
I hoped for 10 families. I got almost 20!
I told them to tell the world one thing they wanted them to know. These parents have a message for you.
I hope you’ll listen. It’s truly something beautiful.
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