Having a child with special needs is no walk in the park. There’s a level of care that comes with such a life that occupies time, energy, money, and emotions. There’s the stares from strangers who want to know what’s “wrong” with your child. There’s frustrations that come with delays and grief that comes with comparison and heartache that comes with knowing your life just looks different than what you thought it would. It’s unmet expectations or the unjust nature of watching someone struggle more than others that makes your heart sink in your chest.
But. And that’s the key word. But, maybe having a child with special needs makes you wake up and notice the important things in life? That life is more than what it seems it should be. You notice the small details that others take for granted. You care for the “least of these” and get the opportunity to show compassion on a level many don’t have the opportunity to do. It’s the sweet snuggles and how a child looks at your face and you know that you were meant for this extra special life. It’s a rare gift that we get as parents of these special and unique kids. A purpose that is rooted deep within your bones you now realize you were meant for all along.
Will taught me this. He opened my eyes 3 1/2 years ago when he barreled into this world and we were told he has Down Syndrome. My life was a tunnel full of pain and grief and frustration for quite some time. But after having the distinct privilege of providing for and raising Will, the grief comes in different ways. It’s a grief that some people will not see him for the absolute shining light he is. He lights up a room and will hug every single person in it, maybe with a high five or hand shake thrown in too. It’s a special gift that only a special little boy with an extra chromosome can do. To think people miss out on the gift he is to our world, it’s their own loss.
His life is purposeful and meaningful and full of joy and wonder and awe. We get to experience first-hand the determination, courage, love and grace of a child who is a literal angel sent from heaven. As parents, we get to see the hard work our children, and us too, put in and then see tangible evidence of. It’s a literal lifetime full of “stop and smell the roses” moments! There were times when we weren’t sure little Will would make it. I’d go to sleep at night having to rest in the knowledge that God’s plan was sovereign regardless of whether Will’s shining smile was in the world or not. His heart condition made living hard and in a state of constant anxiety, but when I see that little scar where a miracle worker fixed his little heart, I can see God’s hand all over little Will’s life. It’s a constant, visible reminder that God is not done with him yet and I get to be a part of something bigger. I get to live regarding the small as extraordinary.
It’s no surprise to me that God placed Rainbows in our lives when He did. They are a team of angels sent from above to help with very tangible needs in families. Jamee, our therapist, opened my eyes to a world of hope when she came into our home. The care and love she gave the Warren family was life-changing and I’ll always be grateful that in the midst of Covid, they still were willing to talk with me and FaceTime his therapy sessions. Jamee became a part of our family and we will forever be grateful for her and for Rainbows. They helped make the path a little more straight for us.
Since he aged out at three, Will goes to Minneha Core Knowledge Magnet School for pre-k. He is loving learning his colors and speaking more each day. He loves on the kids in his class and gives each one high fives and hugs. I love the way our world is changing for the better in accepting those who have different disabilities and seeing their worth. I’ll keep fighting and advocating for Will and kids like him because they matter; they are all precious in His sight.
By Stevie Warren, Rainbows’ parent