By: Ellen Stumbo - www.ellenstumbo.com
I did not dance a jig when my daughter’s birth confirmed her suspected diagnosis of Down syndrome. Dancing is for celebration, and I really do wish I had celebrated her birth but I did not know then what I know now. Instead, fear overwhelmed me. It was if the room had filled with smoke, I crouched down and tried to crawl my way out but realized I was already down, and getting back up and out of the smoke seemed impossible. Everything I imagined was suddenly different, the hopes and dreams I had were gone, blacked out by the smoke.
It’s interesting, really, how easy fear can trash those dreams, fling them around and smash them against the walls, it steps on the frail strands of hope, it calls them rubbish, it laughs at your face, bye-bye sweet dreams!
I know it sounds crazy, but the same day my daughter was born I was wondering if she would ever get married, if she would ever have a job, if she would live with us forever, how her diagnosis would affect her older sister, and how her diagnosis would limit our family.
We are seven years into this journey of parenting kids with disabilities – we since have adopted a child who has cerebral palsy and other mental health issues. I guess disability is not the scary green eyed monster I imagined it to be. My dreams were not trashed like I once thought they were -they simply changed. Today I have new dreams, new dreams for my daughter, for her future, for what our life could look like someday.
There is something about parenting a child with a disability that changes you. You begin to look at your priorities and think really hard about what those priorities really are. You begin to look at people, all people, as individuals – each with unique gifts and abilities, capable, able to contribute something to this beautiful-messy world we live in. You see that all life is valuable, and that value is not based on performance or eloquence, but the fact that we are all created in God’s image, fearfully and wonderfully made. And you see the injustice in this world, and you know it isn’t right, and where your children are concerned, you know you have to take a stand.
Someday, I hope our kids are fully accepted, understood, and valued in schools. Someday I hope school is not a big battle we have to fight. Perhaps someday an IEP meeting won’t be the day you bring the boxing gloves to fight for your child, and the least restrictive environment, and there will be a team that truly sees your child’s potential. What can we do to make this happen? We can dream big!
Someday, I hope our grown children don’t have such a hard time finding a job! A place of employment where they are valued and recognized. A job that makes them happy. Together, with all our voices, we can show the world that our kids deserve a chance. What can we do to make this happen? We can dream big!
And I think of how different things are today for our children with disabilities compared to what they were just 50 years ago. I think of all the special needs parents that went before me, those who dreamed big and changed things for me, for you. Thanks to them my children are allowed a public education.
Thanks to those parents I have access to therapies and medical care for my girls.
And for the adults with disabilities who fight this fight, thank you! Thanks to your tenacity and dedication so much is happening.
There are new legislations coming to the front that will allow people with disabilities more financial freedom, more equality. We are dreaming big!
And our stories, our experiences, they ‘re moving those around us.
I have a friend who started a Down syndrome organization to show the world that all life is precious.
I have a friend who lovingly takes care of her medically fragile and disabled son with such gentleness and love that watching them together challenges me to look really hard at how I treat my children, and my husband, and those people I love.
I have a friend who is hitting it out of the ball park and changing the face of beauty.
I have a friend who parents two children from hard places, she does it as a single mom, and she fights the trauma her children were exposed to before she adopted them and she deals with the behaviors because she knows her girls desperately need someone that will believe in them, someone that will not walk away.
I have a friend who started training for marathons so she could be her daughter’s legs.
I have a friend who struggled to accept his son’s diagnosis for years and who distanced himself from his family, but God moved in his life and he is now on a mission to see there are no more vacant dads in the home.
I have a friend who gathered a group of writers to bring the hope of Christ and remind special needs parents that they are Not Alone.
I have several friends working to encourage their churches to embrace disability.
There are so many more…
No act of kindness is too small, it could change someone around you. Dream big!
Taking a stand could start a movement. Dream big!
Your interactions with your child in public might change someone’s perceptions about disability. Dream big!
I guess dreams are like the clouds. Clouds are full of potential of what they could be, and I have noticed how often when the wind blows those clouds change from fluffy bunnies into roaring lions.
So let your dreams change, let the wind blow through them and keep dreaming big, because you can make a difference.
No dream is too big or too small, what is your dream?
Ellen Stumbo writes and speaks about finding beauty in brokenness with gritty honesty and openness.
She's passionate about sharing the real – sometimes beautiful and sometimes ugly – aspects of faith, parenting, special needs, and adoption.
Ellen’s writing has appeared on Focus on the Family, LifeWay, MomSense, Not Alone, Mamapedia and the Huffington Post.