Things We Don’t Talk About (As The Parent of a Disabled Child)

I think one of the biggest challenges to parenting a child with a disability is that it’s so hard to talk about the unique struggles we face. I think a lot of us are afraid to express our feelings because people will equate our emotional expression to complaining or even worse, as a reflection of the love we have of our child. The other challenge that I’ve run into is WHO can I talk to? It’s a scary feeling to have all of these emotions bubbling up inside of you and you feel like no one will get it. Whether you’re afraid of being judged, misunderstood, dismissed, or ignored, finding a safe person to talk to can be hard at times as a parent of a disabled child.

But if you take away anything from this blog post, I hope it’s this. I encourage you to find your people. Even if it’s online–having a community that can be a safe place to TALK, admit when you’re having a hard day, and receive support is so important. Finding validation and connection in shared experiences is healing.

So here are some of the things that we don’t talk about as disabled parents:

The trauma I’ve experienced from witnessing medical trauma

I threw up in a trash can because I saw the doctor pull out two six inch wires from Callie’s chest after her heart surgery. So many times, we had to hold her down so they could give her shots, insert an IV or change out her ports which was pretty equal to torture. The first thing I heard after her amputation surgery was her screaming “Mommy” from the recovery room.

I still hear that scream for me in my nightmares.

Parents of kids with disabilities bear witness their child’s pain and distressing medical procedures over and over and over again.

You have a stressful trigger, like a child’s surgery or significant illness or receiving a diagnosis you didn’t expect, and it comes with emotional and physical repercussions. For some people, they are able to manage that stress and it goes away over time. For others, it intensifies over time. What is unique about disabled families is that they’re set up to experience it over and over again, as opposed to someone having a major life event or experiencing a disaster that happens only once.

It’s the repetitive nature that’s the doozy. It’s one thing for a parent to bring a child to the ER one time, and maybe watch that child, who’s very sick, in a super scary environment. One time is enough. Families like mine are doing it 15 to 20 times and it’s cumulative.

I can’t jump on social media without seeing someone referencing their trauma–but never in relation to healthcare.

The way parenting a disabled child has impacted my marriage

Parenting in and of itself is HARD. Adding in a disability diagnosis which comes with a huge financial undertaking and I felt as if we’d been hit by a train. Or a bus. Or several buses. All the plans my husband, James, and I had for our future years suddenly felt out of reach and our financial plans were drastically changed with her medical expenses and long-term health care plan. It was so much to take in and I felt completely overwhelmed.

Days after Callie’s arrival, we were required to speak with a chaplain at the hospital. At first, I had zero clue what this person was supposed to offer me. Did he have some magical way to heal my daughter’s leg? Did he have some profound inkling about how to pay the mounting medial bills that were stacking up? It wasn’t until we met with him–sobbing in the quiet dimly lit corner of the chapel, that it was revealed. The chaplain shared that families loving children with a special needs or disability diagnosis are 80% more likely to face divorce. He told us we needed to make sure we had out “hearts and minds right” and commit to one another in a totally new way. He shared some tactical advice–explaining that we tend to remember in great detail big life events and the days following. He said that potentially our reactions to each other in this very moment in time would be the story we would hold for the rest of my life and depending on that–could make this more or less traumatic. He said from this point forward, our marriage would be different.

And he was absolutely right.

The fact that I can no longer relate to many of my friends

It’s a hard one for me to come out and say, but it’s true. When I saw my friends kids walking/running/jumping I would feel a pang of grief/sadness/jealousy. It would tear me up inside when I saw Callie struggling to do something that comes naturally to a typical kid, or when she would miss out on events due to being in the hospital. It can be hard sometimes to hear about the accomplishments of my friend’s kids and sometimes, I’m just sad for my family. During school pickup, Susan would be sharing about little Mckinsley’s latest cold and I would feel myself splintering from the conversation. I’ve seen the inside of my own child’s chest cavity and Susan is over here whining about a head cold??

And weirdly enough, I can even feel jealous of other disabled kids who seem to have an easier time than Callie, or who have certain disorders which are more mainstream and understood by the public, and seem to offer more support and resources than Callie’s disability. Maybe it’s petty, or maybe it’s just radical honesty. But it doesn’t diminish all my joy and pride in Callie’s accomplishments. But there are days where it’s very hard for me to be around “typical” kids with her. Which leads me to the next point…

I feel alone sometimes. It’s lonely parenting a child with a disability. I can feel like an outsider around moms of typical kids. While I am happy for them, I also sometimes feel terrible hearing them brag about how their 14-year-old made the varsity team, or how their 10 year old is going on a beach vacation, or got an award for perfect attendance at school (which any child with any type of chronic condition could never even hope to win). Gold stars all around and good for them, but it’s just so not what my world looks like. Even within the disability community, though, there is such variation and nuance in how every child is affected. Only we understand Callie’s unique makeup and challenges. With this honor of caring for her comes the solitude of the role. I often feel really lonely in raising her.

How I’ve grown to resent a lot of the medical system

Our medical system is broken. Full stop.

That I often feel like I’m failing as a parent

I worry that I’m not doing enough. What if I missed a treatment or a diagnosis and that window of optimal time to treat it has passed? I worry about her future, whether she will ever drive a car, or get married, or support herself independently. I am scared thinking of the hurts she will experience being “different” in what’s often a harsh world and I am scared about finances. I worry about what will happen to Callie if anything were to happen to me. I worry I’m not setting her up for success. I worry I’m too hard on her because I’m trying to set her up for success. I worry that somehow all of this is my fault.

That I’m not over it after X amount of years later

For the longest time, I held the hurt of Callie’s disability diagnosis close to my chest, only sharing with James and a few friends. But even then, I remained guarded, limiting how much I shared and how frequently. When your life becomes consumed by grief, you fear your darkness will somehow overtake the otherwise joyful lives of others.

Mostly though, I didn’t know how to talk about the pain because I didn’t know how to process it alone. I learned how to trick myself into hope, to force optimism as a facade. This often looked like channeling despair into anger against the medical system and resolving that I would somehow on my own figure out a way for Callie to walk. I buried myself in books and journal studies, spent hours reading others’ stories on Reddit threads. A disability diagnosis just didn’t mean she wouldn’t be able to walk—we also weren’t prepared for the the emotional toll it took on our family. The grief, sadness, rage, and despair was at times just as grueling as the physical pain of tests, procedures, and navigating a world not built for people like Callie. The grief consumed me body, mind, and soul.

So I started writing about it. And going to therapy. There is something about walking through grief in such a public way. It feels both liberating and terrifying. There is no turning back once you name your experiences, once you acknowledge your pain and the existence of grief. Being honest with the world means confronting the truth head on for yourself, which, once out in the open, becomes undeniable. There’s no take backsies. The hurt now lives outside your body, it becomes it’s own entity. The narrative you so desperately wished to ignore slips through your fingers and becomes its own kind of beast. The pain just is. This is where you’re at. This is it.

I’m exhausted by the neverendingness

I know I don’t speak for all parents but typically there are seasons in parenting. All of the seasons have the good and the hard things (and all of the seasons have hard things) but the unique aspect of disability parenting is that some hard thing may not change and in fact, they might get harder as the child gets older.

The sleepless nights when Callie was teething? Those I knew would end. Navigating pain in her leg, fighting with insurance companies, trying to traverse a world that’s not built for her, and the crippling financial burden of her disability?

Those are never ending. And that’s so overwhelming.

I want to talk about my child but I also don’t want to talk about my child

Callie is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny, smart, curious, caring, and cute she is, or how she accomplished something in school. Sometimes, when I’m having a rough day, or have been made aware of yet another health or medical issue, I might not say much.

As open as I consider myself with the information we share via the blog and on social media–I also only share a small percentage of our lives. I don’t often share with others, even close friends and family, the expansive depths of what we go through when it comes to Callie and her disability. But it doesn’t mean that I don’t want to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about Callie, like “How did do in archery this weekend?” rather than a more generalized “How is she?” which can make me feel so overwhelmed that I usually just respond with a safe, “Good.” Starting with the small things gives me a chance to start sharing–just know that if I’m not sharing, it doesn’t mean there’s not a lot going on underneath.