I get asked that question a lot.
And it’s understandable. Short of my husband and maybe our immediate family, not many people can understand or have insight into what our life consists of…..
I’m a Type One Diabetic. I am married to my amazing husband. We’re parents to our miracle Callie, who has Tetrology of Fallot and is a lower limb amputee.
In addition to working full time, I also write, blog, and do speaking events. That’s on top of the role of advocate, therapist, and caregiver to Callie.
Most of the time it’s a quick answer to that question though, a smile and quick laugh.
But it made me think, maybe I do need to answer it more in depth.
So how do I do it?
First, I’m tired. Like exhausted, tired to my bones and emotionally spent. I’m stressed a lot of the days and drained the other days. There is not an adequate way to describe the emotional toll that this life takes on you. It includes many sleepless nights and an occasional crying session in my car.
But none of that compares to how tired Callie is and the emotional burdens she has to carry around.
Yes, I manage all of her appointments, therapies, and leg adjustments but she’s the one who has to have all the tests done, the IVs inserted in her little arms, and the surgeries done. She’s the one that has to deal with a painful prosthetic until her new one is completed and learn to walk with a completely new leg. She’s the one that has had to endure two open heart surgeries, two surgeries on her knee, and a surgery on her hand. She’s the one that has to deal with all of the rough, painful, impossible things.
Yes, I have to be her advocate. I have to push to make sure that the insurance companies cover what they should and lobby them to cover what she needs. I have to make sure that her doctors are top of the line and we are working with the best medical team. I have to make sure that her school is making the adaptions she needs to be comfortable through the day and able to participate in all of the activities. But Callie’s the one that has to navigate a world that’s not built for her and a world that doesn’t show her represented in movies, ads, and on TV. Callie has to deal with the questions, the stares, and the unkind words.
Most parents would go through hell and back for their child. We’ve had to do that most of her life.
I’ve had to make sacrifices and fight so that she can have the best life possible. If that means extra stress, extra financial strain, and lack of sleep……ok. Because that still won’t compare to what she has to deal with each day.
I’ve had to change my view of the world and make sure that I’m pushing for inclusion for her and for everyone. I’ve seen our share of ignorance and bullying. I’ve experienced people only seeing her leg and her disability. I’ve seen kids run away from her on the playground and parents pull their children away when they try to come talk to her.
But I see all of her. I see everything that she’s accomplished and over come. I’ve seen her fight like a warrior and have the strength and wisdom of someone much older than her years. I’ve seen her walk through fire and come out even stronger. I’ve seen her fight battles adults can’t imagine and endure hardships that would bring most to their knees. I’ve seen her do things they said she wouldn’t be able to do. And to see that spark of determination in her eyes, that stiffening of her spine, and that look of pride when she accomplishes it? A warrior, plain and simple. She does all of that without losing that childlike wonder and kindness–no matter what.
I’ve had to learn to move from what I thought our life would be like…..to what our life actually is. It’s almost as if we were on this path to a pretty little life and someone came along and sidelined us. Knocked us off and threw us on this completely different path that we had no map of…..and no idea how we got there. And yet, here we are. And here’s where we will be…..so we’ve learned to cherish these days. To bloom where we are planted. We’ve turned this perfectly imperfect life into something that we can use to inspire hope, motivate others, and redefine what true beauty is….one step at a time.
And so, when people ask “How do you do it?”……the answer is this.
I do it because I love her. More than life itself. She needs me and I need her. I do it because she’s my heart and soul. My best friend. The best thing that’s ever happened to me. My role model. And as her mama, I will move heaven and earth to make sure that she has the most extra-ordinary life…….