I'm Scared, Again. Parenting an Adult With Down Syndrome

I will never forget a post I read from another mom parenting a child with Down Syndrome. It was a post of repentance. A post that said, “I’m sorry I was sad. I’m sorry I thought you were broken. I’m sorry I wanted something different.” I remember reading it and feeling it deeply with the writer. I get it. I know what you mean. I’m sorry, I didn’t know. I’m sorry I was so afraid.
But here I am. Scared again.
It’s the eve of my oldest daughter Addie’s 18th birthday. She is an incredible young lady. The life of the party. Kind, empathetic, outgoing, witty and able to turn even the toughest heart soft. She also has Down Syndrome. And on the eve of her becoming a legal adult, I’m scared again.
Maybe every mom feels this way when their child turns eighteen. I don’t know. This is my first. But there is something that feels less exhilarating and more weighty as I’m parenting an adult with Down Syndrome. I know most of the time I like to come to you, my faithful reader, with a lesson learned, an aspiration. And perhaps by the end of this entry hope will float for us both.
I’ve spent most of Addie’s life in a FIGHT. In the early years it was a fight for her life. Is she actually going to live? As she has grown, it’s been a fight for her rights. This was like a battle against a shadow, a system, a “people”, an unseen authority that I could not control.
As time went on, the unknown became our normal. Some fights were won and some just weren’t worth battling anymore. I’ve been able to put down my sword and allow my heart to enjoy my daughter. That presence has led to a full, rich life with my child. It also has caused me to feel. Fighting is sometimes easier. You can tighten your skin and pull up your bootstraps. You can harden your heart, focus your mind, pull out your weapon and fiercely forge forward—only the strong will survive.
Feeling is harder. At least for me. And on days like today when I look over the edge again—uncertain of my daughter’s future, I’m scared.
I fear for her well-being. Will she have a sense of purpose? Will she find meaningful work? Will she experience romance? Will she be sad when her siblings go off to college? Can she really go, too?
I am scared for her safety. Will she be able to get around on her own? Am I helping too much? Am I helping too little? Will she be disregarded now that she isn’t a child but an adult?
I don’t know what you’re afraid of. In a world of unknown, one thing is certain, you too have complicated circumstances and are facing something scary. I actually hesitated even sharing these moments of unfiltered emotion with you for another fear, you would try to fix me. You would tell me how blessed I am. How lucky I am to be Addie’s mother. These are all things I know. OF COURSE. It is possible to hold both GRATITUDE and GRIEF. It is possibly to have incredible JOY and DEEP sorrow. That is what makes us human, unique and also the reason for Jesus.
Jesus is listening. He wants to. And he hears me when I speak. His words are my guide. I live them out loud. And they soothe every part of me. He also gives me and YOU permission to stop bypassing our pain and attempting to cope with all our quick fixes and temporary escapes. So please hold the word of encouragement, the scripture to preach, or even the prayer you might want to say in light of your discomfort in my story. Perhaps what we could do for each other in these moments of fear is simply listen. We could feel alongside one another, offering comfort and grace.

As I approached this week–

  • The week my little girl turns eighteen, and I’m reminded that we’re now moving into a new season of adulthood with a precious one whose adult needs require things I’m not sure how to provide.
  • The week there is a court date and a judge will make some massive decisions about her capacity that have massive implications for her future, and you’re not in charge.
  • The week when something as simple as birthday party RSVP’s you were hoping for just simply don’t show up, triggers sadness and fear that she won’t be celebrated and cared for by the friends she so desperately wants. And Mom and Dad don’t like it that way.
In the midst of the moments that brought about a cocktail of “feels” I cried out to Jesus. And I was reminded of his pursuit of me. And the truth about the past unknowns and the promises He has so faithfully delivered to Addie.
Surely your goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever.
I think it’s normal to reflect back on your child’s birth when it comes around again each year. I find myself doing that with all of my kids. When it comes to Addie, it’s always a mixed bag of emotion. So much unknown and fear for the future when she arrived with Down Syndrome. Yet God was with us, His love washed over us, and has been GOOD.
Surely goodness and love will follow me all the days of my life…
THAT’s why you and I can live unafraid. That’s what’s true about God.
No court of law can over-rule it.
No hurt or heartache can have the last word over it.
No birthday party RSVP list can remove it. God’s goodness is watching over me.
His mercy is working IN me.
And His glory is waiting FOR me, for you and for Addie.