When I found out Callie would need to have her leg amputated, I wanted to protect her from all the negativity that went with it. Having grown up myself with Type One Diabetes, I was very much aware of wanting to “be like other people” and constantly trying to do whatever I could to not stand out. Callie helped me evolve into an outspoken person—her guardian, her protector, her mama. I had to learn as we went–navigating this new world of disability and trying to keep myself afloat in the process.
It’s through that process that I learned about myself, my daughter, and so much more about life. Here are eight things I’ve learned from having a daughter with a disability:
1. Raising a child with a disability is hard. I’ve learned that people fear what they don’t know.
Parenting is not easy, plain and simple. It’s HARD. What I’ve learned is that people are people and no matter what you do and say, they will always have their opinions and judgements—whether they are in a similar situation or not.
People could ask some rowdy and insensitive questions. “What’s wrong with her?” “What happened to her?” “Was she born like that?”
And don’t get me started on the staring.
But I’ve learned that most of this ignorance comes from people just not knowing. People don’t have the experience of interacting with people with a disability on a daily basis. Instead of getting upset at these questions, however absurd they may be, I learned to take a deep breath and answer with honesty and without negativity. I realized how easily people can say things without thinking about how much pain it can cause someone. I found being honest in a situation and sharing our very real lived experiences was the best way to handle it for my peace of mind.
Don’t be afraid of being open and honest about your child. Don’t be afraid of what people think. Don’t think you have done something wrong. Speak up, stand up, and be your child’s biggest advocate—they are counting on you.
2. I’ve learned to go out and live our lives. We don’t have to hide because someone is uncomfortable around my daughter’s disability
3. I’ve learned that I’m stronger than I knew I was.
When Callie was diagnosed, it definitely wasn’t the first time in my life that I was faced with a situation I knew nothing about and didn’t have anyone to turn to for guidance. But it was the first time I was filled with so much grief, sadness, rage, uncertainty, fear, anxiety and unease all at the same time. I remember sitting and wondering what the hell I was going to do. I was overwhelmed with all the subsequent appointments, surgeries, physical therapies, endless paperwork, and meeting after meeting with therapists, specialists, and doctors. It was our new “normal.” There was no other option for me: I had to pull it together.
I needed to be her strength. I couldn’t shrink back in fear. She wasn’t broken, deficient, or lost—and neither was I. I knew how to be resilient, strong, capable, and tenacious and now I needed to show her how. In all honesty, I had forgotten my own strength (and the power of it), and struggled internally for longer than I care to admit. But I was able to find it again, tucked away under my heart. It was always there. It was just hidden under the grief; resting until I learned how to navigate this new life.
We don’t let Callie feel sorry for herself. We’ve taught her that she is a warrior, she is a fighter, and she is strong—just like her mama. It’s incredible what you can do when have your back up agains a wall and have zero options. I underestimated myself at the beginning of our journey, but I do not anymore.
4. I’ve learned that my daughter is an amazing teacher.
The past sixteen years have taught me to live life fully and unapologetically, how to enjoy every moment, and how to find joy and whimsy in the world–all because of Callie. Nothing is impossible in her eyes, and it’s because of this we have learned to embrace her disability. Her inner strength is a force to be reckoned with and it’s awe-inspiring.
The truth is, she has a different perspective of the world because the world is not built for people like her. We have learned to get really good at stopping and listening to her–because nine times out of ten, she will blow our mind with the knowledge possess, the depth of her wisdom, and the perspective she has of a situation.
Imagine if we just stopped to learn and listen to everything and everyone around us; especially those in the disabled community.
We could change the world.
5. I’ve learned that her diagnosis means nothing, and it also means everything.
Yes, Callie is labeled constantly, and to a certain degree, we all are. What we’ve learned though is what labels don’t do is define us.
Even though I want to shield Callie from the negative comments she receives kids and adults alike, at this point in her life, she doesn’t need me to. She just wants to be herself and she tries her hardest to get people to see and accept her for who she is–unapologetic, brave, smart, capable, strong, and beautiful.
Kids with disabilities are often perceived as being less than capable, but I know the opposite to be true. We assume competence until proven otherwise.
She wants to be a content creator. She wants to go to the Paralympics for archery. She wants find homes for every dog in the animal shelter. She wants to beat her Daddy in Halo. She wants to be a best selling author. She wants to be a baker and a chef. She wants to teach kids how to fall in love with archery and horse back riding.
Has she ever said those things to me? No, not all of them in so many words. But, she has shown us in her own quietly confident ways that she fit neatly into one box. We are whatever we want to be, you just have to do you with passion. Like everyone else, she is doing the best she can with what she has.
6. I learned to leave the “why” to the doctors. Instead, I focus on the present and what I can do to prepare for the future to give her a good life.
Callie has a lower limb amputation, a heart condition, and several skeletal abnormalities. I’ve learned the journey with a medically complex child doesn’t begin and end with a diagnosis. Finding the cause is only half the battle–living life with it, well that’s a whole different world.
I spent years agonizing over my pregnancy. Did I eat something that caused it? Could my diabetes have contributed? Should I not have worked up until the day I had her?
I can’t focus on what caused it, or why. I have to focus on what I can do as a parent now to insure she has the best opportunities to thrive.
7. I’ve learned that things don’t always go the way you had hoped, wished, and prayed for.
Although I never want Callie to feel sorry for herself, the struggles that she and those with disabilities like her face are very real. The world is not easy to navigate for someone like Callie and a lot of the grief I’ve experienced as a parent stem from that.
With every milestone, I always counter it with “what if.” When the therapist says, “Doing PT two times a week will help Callie’s hip and quad strength,” the first thing that pops into my head is, “What if it doesn’t?” It’s not a negative way of thinking, it’s just the reality of what we have to deal with every single day—because more often than not, things don’t go as planned.
What if she has to have another open heart surgery? What if she continues to have pain when walking? What if she’s not able to find a full time job that she can do comfortably? What if no one wants to hire her because of her disability? The what ifs drives me crazy, breaks my heart, drowns me in grief and makes me anxious.
But then, what if she wins a gold medal? What if she creates her own company? What if she becomes a best selling author? What if she becomes a keynote speaker and motivates and educates people all over the world? What if she lives a bold beautiful life on her own terms?
The possibilities are endless, and I have learned to prepare for both.
8. I’ve learned this shit is hard.
My love and determination for this brave, resilient, and beautiful girl holds no bounds. It’s as expansive as space and at time it scares me how much of my heart she holds.
But I’m also human, and sometimes, I just don’t know what to do.
When this happens, I go for a walk with Jack and just cry. Then I come home, wash my face, put a smile on and do it all over again, because I want Callie to know that no matter how hard it is, she is my everything and I love her.
And in my eyes, she is magic—exactly the way she is.
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