‘It stings to watch other kids play so effortlessly. I play the ‘what if’ game every. single. day. 6 years later, I am still holding my breath.’: Mom shares candid reality of special needs parenting

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“‘Your son has autism.’

This will probably piss a lot of people off, but those words felt like a death sentence to me. The lump I felt in my throat and the heat I felt behind my eyes gave way, and the tears fell quickly and freely down my cheeks. My husband, Justin, grabbed my arms and mouthed, ‘It’s going to be OK. He is going to be OK.’ I could only just nod. The developmental specialist (sweetest guy ever) assured me it was mild, but I heard the softness and understanding in his voice when he asked me how I felt. Instead of saying crying, I responded with, ‘Like dying.’ Freudian slip.

Courtesy of Meaghan Kinzle

You see, life for Caden has NEVER been easy. Autism isn’t the first diagnosis we have received. Although, for some strange reason right now, it feels like the ‘worst.’ Worst. Weird, right? I am comparing the diagnoses of my son. What kind of mother am I? Special needs parents know what I am talking about… how many of us play the ‘well, at least he doesn’t have that.’ Really silly rationalizing, but somehow it makes us feel better in the moment.

When Caden was only 12 months old, he had his first tonic-clonic seizure and had aspirated and asphyxiated. That night was, and will probably always be, the scariest night of my life. We thought our son was dead. My body relives that night just by thinking about it. We had found Caden rigid and blue, with his eyes unmoving, and we could only see the whites of his eyes as if his eyes were fixed to the back of his head. We couldn’t seem to get him to breathe. His body wasn’t moving as I dialed 911 while simultaneously running out of the door, with Justin running to the car with me. With Caden in my husband’s arms, we tried to resuscitate him.

Courtesy of Meaghan Kinzle

No shoes, no bra, just praying so fiercely to God that He not take Caden that night. I remember so vividly asking God to let Caden live and to take me instead. The 911 operator told us to pull over and let the ambulance take over, but we lived so close to the hospital and I knew we could beat them. Just as she was telling me to pull over, Caden started crying. This cry that I will never, ever forget, not because it sounded like he was in so much pain (that, too), but because he sounded at all. All of a sudden, his lifeless, rigid body came to, and I remember distinctly feeling like I could breathe again. I didn’t even realize how hard I was holding my breath, but even now, 6 years later, I still have moments where I realize how hard I am holding my breath. I know now that that will never go away.

That was the first of many long nights with Caden. Since that night, his speech and language have regressed. His health has suffered. We have had many sleepless nights where we sleep with him to make sure he is still breathing. And to this day, if we wake before him, I still panic that I am going to find him in his bed, dead. Justin or I will make sure, every night, that Caden is breathing before we go to bed. It’s our normal, but as I reflect on our reality, I realize how painful it is. I can’t imagine being able to walk upstairs and right into our own bedroom without having a thought that our son may not be breathing.

mom holding son
Courtesy of Meaghan Kinzle

In Caden’s 7 short years, he has been diagnosed with severe apraxia, epilepsy, an immune disorder (which has caused us to stay in the hospital more in his short life than most people spend in an entire lifetime), two genetic disorders (one recessive, thankfully), intellectual disability, autism, and cerebral palsy. I have come to terms (seriously, though… what does that even mean?) about Caden’s former diagnoses, but not this one, and not the cerebral palsy. I am still processing. And maybe that’s just how it works.

MOM GUILT. BLAME. ANXIETY. All present factors in my life since Caden. (To be VERY clear: not BECAUSE of Caden, but SINCE that defining night 6 years ago.) Any special needs parent knows how hard you stay hit with guilt, blame, and anxiety. Like, ‘regular’ parent guilt, but times 100 and on speed and then sometimes cocaine. I don’t know about you, but I play the ‘what if’ game literally every single day. Every. Single. Day. No matter who says what to me, I still blame myself. I don’t care who you are, what degree you hold, or how much I love and trust you, I blame myself. I will always blame myself. In some way, shape, or form Caden struggles because of something I did or didn’t do. At this point, though, I recognize that that doesn’t matter. What matters now is how we will deal with this, how we will process this, and how we will manage this.

I smile. I pretend. I hide the pain I feel so deeply in my gut when I see typical kids playing together, and Caden trying to talk to one of the kids, and the mother looking up helplessly at me silently saying, ‘We can’t understand him.’ So I instinctively apologize for him. ‘Oh, he has a language and speech delay, so he is hard to understand.’ And she smiles as if she understands, and I translate the words Caden is saying. She will probably never understand.

family photo
Courtesy of Meaghan Kinzle

I don’t have resentment for you or your typical kids. I have sadness and pain for mine. I can’t watch videos of mothers dancing with their sons at weddings, I have a hard time watching organized sports where young boys play so well together. This doesn’t make my love for him any less, or my admiration for who he is any diminished. (I really do think I have the most perfect kids in the world, and that doesn’t change that. But really… they’re the best in the universe.) I would argue that it does the opposite: I get to love my child in a way that parents of typical children would never understand. I remember there was a time when I was hesitant to post pictures of videos that indicated any of Caden’s delays. It took me a long time (too long) before I realized it wasn’t shame, embarrassment, or even pride that stopped me from posting those things. It was pain. I would see other children doing things so easily and effortlessly and it stung to the core to see what came so easily to others is such a struggle for my child.

In my head, I know that this diagnosis isn’t really a death sentence. I know that it just means we will add more daily therapies to the list of appointments that we somehow find the time for because we make the time for the things that matter. My son teaches me more about life than he will ever realize. He gives me a purpose that is far beyond my understanding most of the time. I fight for him on a daily basis. At this moment, I will embrace the pain, I will allow it to envelope me, and I will allow myself to feel guilt and sadness, and regret all the things I tell myself I could have done differently. But soon I will use that same pain to fuel me.

My life with children will never be what I had expected. (Because, really, what parent expects for their child to struggle with health issues and neurological complications?) My life is still rich, and it is still full. It is the opposite of typical, and nothing like I could have dreamed. My struggles and my pains are the same as yours, but they’re different. And I wouldn’t change my child, or my life, for anything. Because my child is the same as yours, but he is different.”

mom with kids
Courtesy of Meaghan Kinzle

This story was submitted to Love What Matters by Meaghan Kinzle. You can follow her journey on Instagram and Facebook. Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories and YouTube for our best videos.

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