The Power of Grace When Parenting Children With Disabilities

My 15 month old daughter introduced me to the Down syndrome community, but she was not my first child with a disability. My first daughter had a rare genetic condition and passed away when she was 4-and-a-half years old, unexpectedly, during a hospitalization. I am familiar with disabilities, albeit through two very different experiences.

As a mom of a child with a disability, I am always prepared to fight insurance companies, medical professionals and even strangers in public. But with my first child, things were much different than they are with my second child. If there was any inkling of a negative tone from someone, I rode up on my white horse wielding my sword ready for battle. I would have taunting thoughts like, “go ahead and say something, I dare you — wrong mama, wrong day.” It was intense. I was intense.

I was a fierce advocate for my child. I was a force to be reckoned with — just ask the teachers at my daughter’s first IEP meeting! It was three hours long and I am pretty sure they all went out and had margaritas and talked about me afterwards. I researched, I listened, I asked questions, I pushed the envelope and I always went one step further than I thought was possible. There wasn’t a fight I would back down from, even if I was the underdog. And my track record for winning those fights was pretty darned good. I don’t regret any of that.

However, I was definitely not schooled in the art of balance, and my readiness for fighting extended into almost every area of my life. I was always on. I was like a warrior who sleeps with one eye open and a dagger under her pillow. It was exhausting.

Then my daughter died.

It had nothing to do with how hard I fought, how much I advocated or how fiercely I loved her. I believe it was part of God’s plan — he did not consult me on this plan, but I hear that’s just how it goes.

After she died, I did not know how to lay down my sword and put my white horse out to pasture. Without her, I was lost. Everything I did, I did as a shell of a person, but with a white hot fire in my heart. Nothing was right. I had excuses for, reasons for, and issues with everything. I was a ball of negative, angsty energy and I was heartbroken. It was a bad combination.

From the day she was born I ate, drank, slept and breathed as an advocate for my daughter. I was always poised to put my foot down, to protect her interests and her safety, and I let the fight consume me. That’s important to reiterate for those of you in a similar boat — I let it consume me.

I fought when there wasn’t anything to fight about. Sometimes without realizing it, I even started a fight. It wasn’t intentional, it just became a part of who I was and at times I lost perspective. She was my only child and she was a medically complex, disabled child. There are no rule books for that kind of parenting and I knew no other parents in similar situations. I had no way of knowing that fighting for her could turn into perpetual fighting that would stay with me even after she was gone.

As parents, I think we can all get our hackles up for our children if the need arises. That’s reasonable. But as parents of disabled children or children with medical complexities, it can be a frequent occurrence. We must always be ready to fight, absolutely. The challenge is finding the balance; knowing not only which battles to tackle and which ones to let go, but almost more importantly, knowing what isn’t even a battle to begin with. And finding grace along the way.

Grace.

What a simple, pleasant word, right? But the power this word has given me is exponential.

It wasn’t until after my second child was born that I found grace.

That power brought relief.

That relief showed me clarity.

That clarity brought understanding.

That understanding brought insight.

That insight paved the way for reflection.

That reflection shaped my resolve.

And that resolve changed me.

It reduced my anxiety, my insecurities and my fear.

Now that I think about it, perhaps I didn’t find grace at all. Perhaps it found me. Either way, I am so glad to have it in my life.

These days, instead of feeling the need to fight at every interval, I take a moment and extend grace. I extend grace to myself and to others. I don’t see every comment, every opinion, every look in our direction, every small interaction as a personal attack like I did before. I have started to learn not only to pick my battles, but to recognize the impostors. And that saves a heck of a lot of precious energy.

Not every person staring at us in the park is looking to make a negative impact. Sure, maybe they are staring because we are different, and maybe we all hate to be stared at, but it doesn’t mean they are doing it with bad intentions. It certainly doesn’t require me to get my hackles up and mean mug them. If I extend grace, I open up communication. I provide an opportunity for a positive and meaningful interaction, and that’s a lot better than projecting my insecurities onto them.

Grace is generous. Grace is thoughtful. Grace is deliberate. Grace is all the things I was missing when I was constantly in battle mode. And Grace is my responsibility, I can’t pawn that one off on someone else. If I had given myself grace to feel the heartbreak from losing my child, instead of pressing myself to find purpose and make an impact, I might not have left four jobs in my wake in a one-and-a-half year time period! If I had given grace to people who didn’t know what to say or how to say it, instead of shutting down and tuning out, I might have helped to open a few hearts.

Extending grace to myself means letting go of expectations and resisting the fight and flight urge (I have always been the type of person who runs away while throwing things at the problem behind me). It gives me the opportunity to comprehend and reflect on what is before me so I can experience more serenity in my life. Extending grace to others means giving them the benefit of the doubt. It gives them the opportunity to be open and available and extend themselves to make a meaningful connection.

Finding grace has helped me find the balance. Finding grace doesn’t mean I am not ready to defend my child when needed, it just means I am not stuck in a perpetual battle state of mind. I like where things are going now that I found grace. If I could spread grace to others like seeds on the wind, now that would be something wonderful.