From the moment you first find out about your child’s disability, you begin to fight for what you believe is best for them.
You hear the term advocate thrown around, and that title immediately becomes your new identity. You learn quickly what it entails, and the weight of it bears down on you at every moment. You become stronger because of that constant weight, but that doesn’t mean you no longer doubt yourself. In fact, you are constantly wondering if you are doing what’s best for your child – if you’re making the right choices, if you’re doing enough therapy or if you’re actually doing too much therapy and it’s somehow taking away from other needs.
There is No Rulebook
When parenting a child with special needs, you eventually learn that there is no rulebook – that being an advocate looks different for everyone. What I have learned in my own journey is that it’s easy to fix your eyes on the next surgery, therapy, diet or appointment, but it’s often difficult to simply embrace and enjoy your child in the moment.
Our daughter just turned 6. She is the most stubborn ray of sunshine you will ever meet. She loves to sing and dance, play with baby dolls and wrestle with her big brothers. We adopted her three and a half years ago, and she has Down syndrome.
After we brought her home, we began doing all the things we knew would be beneficial for her. We exhausted every therapy option and we worked with her constantly. With every passing month she progressed and learned new things. She began to grow and gain weight and eventually started walking (and running shortly thereafter!).
Speech was the one area where she really seemed to struggle, but I told myself that we just needed to work harder on it. We tried every program that promised results and still made very little progress.
I blamed myself. I constantly had my eyes open for that “next” new thing to try with her. I watched videos of other children with Down syndrome – children much younger than my daughter – singing their ABCs and reading. I would cry because I felt like I’d failed her.
Losing Sight of the Blessing
One day I felt God speaking to my heart and asking me the question: Why does it matter so much to you if she talks? I thought about all of the obvious reasons why communicating verbally would make my daughter’s life easier – and mine, too, for that matter. How I dreamed of hearing her engaging with her siblings or telling me she loves me at the end of the day when I tuck her in.
But doesn’t she do those things already? The thought welled up inside of me and stopped me in my tracks. Instantly I recalled how she runs to me and wraps her arms around my neck, smothering my cheek with kisses. And how I hear her playing and carrying on with her siblings every day.
God was showing me how I’d focused so much time and energy on who I wanted my daughter to be, all in the name of what was best for her; yet I had lost sight of the blessing that she already is, just as she is, nonverbal and all. I was so focused on her talking in the future that I wasn’t listening to what she was already telling me in our everyday life.
As parents, we need to find the balance between pushing our children to be all that God created them to be, while at the same time recognising that there is absolutely nothing they could ever do (or say) to make us love them more. We must constantly ask ourselves the question: What message am I sending to my child(ren)? Is it one of encouragement rooted in unconditional love? Or is it one that says you are not enough the way you are?
They might receive the latter message every day from the world around them, but we must be sure to send them a far different message at home.