Lessons I’ve Learned from Having a Daughter with a Disablitity

My daughter has an unusual body. She has a chronic heart condition, scoliosis, skeletal abnormalities and a limb difference. She’s also a determined, mischievous, tenacious, funny, sarcastic, loving, empathetic, and creative person whom I love very much.

As I parent her, there have been many days when I’ve experienced both big highs and crushing lows and at first that surprised me—how could I feel such opposing feelings at once? How do joy and grief coexist at the same time? Aren’t they like oil and water?

For instance, the night before her hand surgery at 5 years old, she wrote a full story all by herself for the first time. The worry I felt over her fourth major surgery was now accompanied by pure joy watching sweet face as she excitedly showed her Daddy her literary masterpiece.

And the day that a San Antonio cardiologist told us the gut wrenching news that my daughter would need a second open heart surgery was the same day that she ran almost a whole mile at school for a fundraiser. As I watched her face telling the story, I was captivated by her grit and exuberance.

Now I’m no longer surprised when grief and joy appear side-by-side. I’ve learned they are my constant companions on the journey. Grief on my left and Joy on my right. These are other lessons I’ve learned from parenting my disabled and medically complex child:

We need way more compassion.

She’s taught me so much about compassion. Specifically, that we need much much more of it in this world. The cold winds of mistreatment, exclusion and ableism blow us around like a frosty wintery wind. However, my daughter has figured out that giving compassion freely changes the world. She never sees others as being different from her and she’s always first to make sure you’re okay if you’re sad or bummed out about something. She’s the first to include others and the first to welcome others. She’s the first one in the group to make sure everyone’s voice and experience is heard.

Callie participates in an archery league where all of the kids have a disability. She’s the first one to open a door for others, run and grab a chair, and help where it’s needed. She embodies compassion for other people, especially those who also have special needs and disabilities. Imagine that! A child with special needs loving and caring for another children who have special needs. To her, they aren’t different, they simply are people who move around the world in a different manner than most.

Equality matters.

For as kind-hearted as my daughter is, I’ve watched her deal with her fair-share of mistreatment for being different than other kids. Often, the inequality that still exists more than ever in our world, sticks out like a sore thumb when you’re parenting a child with a disability. I’ve watched the way other kids react to her on the playground when they see her prosthetic leg or see her running. I’ve watched other girls turn their back on her and tell her to go play somewhere else, because she’s different from them.

I am reminded how much equality matters every time my heart is shattered over the way my daughter is treated. You have an entirely different perspective on this when you or someone you love deeply is the victim of it. My daughter is a beautiful, worthy, valuable human being. It saddens me that there are some in this world that miss that entirely because they’re too busy thinking about themselves first.

We will never live in a world of peace until we begin to see EVERYONE as equal participants in this great thing we call life.

There’s immeasurable joy in this world when you look closely.

Joy is not about being happy all the time. It’s about choosing to be content with life, regardless of the circumstances. It’s a consistent belief that you’re okay, even when you don’t feel okay. Sometimes that’s happiness, sometimes it’s not. Sometimes that’s just a peace in knowing that you’re alive, you still have a heartbeat, and you’re still kicking!

If there were a poster child for a joy filled life, it would be my daughter. Even at 15 years old, she lives with a contentment and view of the world that I sometimes envy. I pray she never loses that.

It’s pretty safe to say that, in many regards, my daughter has become the teacher. I’ve learned so much from her. Mostly, how to see the world around me. When others see dark, and hopeless circumstances, my daughter has fought enough dragons to know she is the light. She sees hope. She sees magic. She sees positivity amidst the most daunting circumstances.

Joy is not about being happy all the time. It’s about choosing to be content with life, regardless of the circumstances.