It’s hard.
I think one of the hardest things that no one can prepare you for, is the grieving process.
Hear me out. I didn’t lose my child, true. But I did lose the child and experiences I was conditioned to expect while pregnant. I sat waiting everyday for that first word, that first kiss, that first hug, that first “I love you,” because that’s what I was told the best thing about being a Mom was.
When Nate was diagnosed, the words hit me like a freight train. I sat there, staring at the “professionals” on the Zoom team with me, who were all smiling sweetly, like they hadn’t just dropped a bomb in the middle of my world. I heard the words, I heard the explanation, I heard the expectations of a child diagnosed with Level 3 Autism Spectrum Disorder. I didn’t absorb it, not a single aspect. I sat there with a smile plastered on my face, nodding along to their words, while in my head I thought, “will there ever be an “I love you?”, “will I ever hear my son’s voice?”, “will he ever go to school?” The endless list of questions that soon became the daily playlist in my head.
Like most parents, Nate’s diagnosis did not come out of the blue. We had been warned, prepped, coached, on what to expect if we did receive a diagnosis. Had it drilled into our heads that he would not be on the waitlist for an assessment unless his doctors truly believed he was Autistic. That being on the waitlist was almost as good as a diagnosis, and to start re-routing our lives immediately.
I’ve never had a close family member pass away. I’ve luckily never been on the receiving end of a death notice. I can’t begin to fathom what that must feel like, but I do imagine I felt something close to that when I was told my son was “severely Autistic,” and would likely remain “nonverbal.” I believe I felt something close to that when I was told my son would likely have “massive difficulties in school,” and that I should empty his RESP and put it into a Disability Savings Account instead. I could make a list 50 pages long on things I was told to lose hope in, to change expectations about, to stop planning for. A normal family camping trip? Probably not. University acceptance letters? Nope. Girls coming home to meet me. Likely not.
What felt like a massive list of beautiful things to plan for, to expect, to revel in, that was handed to me when I was pregnant, was quickly ripped from my hands and replaced with a paper-thin instruction manual on raising a toddler with Autism Spectrum Disorder.
I like to think I powered through receiving Nate’s diagnosis, and I think for my sanity, I let myself believe that I did. However, I know I didn’t. I know I cried, every night for weeks. I know I got lost staring at my son, wondering what I did wrong. I know I started avoiding public outings, and hanging out with my friends’ kids, because the jealousy was overwhelming. I started to resent myself, for not doing things differently. I spiralled. And while I didn’t blame Nate, he suffered when I spiralled. Instead of helping him, educating myself, learning what I could – I sat around numb, miserable, hopeless, hating myself, doubting myself.
It took me weeks before I started to shrug off the darkness. Before I realized what a serious disservice I was doing to my child. That I was being ridiculously selfish. Sure, the words “you have Autism,” don’t mean much to him right now – but for how long has Nate walked around, played, snuggled and slept, wondering about why his brain seems different? Wondering why his friends can “make sounds” to their Mom’s and get what they need right away, but he needs to get up, grab my hand, and bring me to what he wants.
I grieved for a long time. And if you’re reading this, whether you’re new to a diagnosis, or a seasoned pro – know this: it doesn’t go away. At every stage, there is something you grieve. For all the accomplishments, steps forward, there are always doubts, guilt, loss at the back of your mind. My son starts Junior Kindergarten in September. This is a monumental time, and yet, I can’t help but focus on the “normal” things I might miss out on. But that’s what you have to force yourself to do – you have to make a dedicated effort to focus on the things you WON’T miss out on, or you’ll blink and those moments will be gone.
I used to sit around and think of all the things Nate would never do with me, all the things we might not be able to do as a family. Would he be able to go to summer camp like I grew up doing? Would we ever be able to take him camping or hiking? What about staying in a hotel somewhere? I’d be so anxious thinking of the what-if’s and how-come’s, and worrying about when the next behaviour or tantrum would happen, that I missed out on the good moments, the sweet memories, the laughter that my son experienced during those times.
There is no such thing as a normal family vacation. There is no such thing as a tantrum-free summer. There is no such thing as an anxiety-free road trip with kids. THAT’S the norm. Being overprepared for everything, but underprepared at the same time. Feeling excited but anxious at the same time. Loving every moment but also dreading how your kid will react to change in schedule. It’s not just Autistic kids that struggle with these things, but neurotypical kids as well.
We all need to cut each other a break. When you see the mom with the neurodivergent son trying her best to keep her son from screaming and throwing his food at a restaurant when the chicken nuggets aren’t quite the way he likes them….throw some positive vibes her way. When you see the mom with the neurotypical kid who doesn’t want to wear his shoes to walk around, because bare feet are clearly better… throw her some positive vibes. We’ve all been in each others shoes – motherhood is HARD, no matter what obstacles we do or do not face.
Mom guilt is real. Grief during motherhood is real. Whether you grieve for the child you had prepared for but didn’t get, grieve over the person you were before you had kids, grieve for the hot and steamy romance you had in your marriage before having 3 kids, or simply grieve over the difficulty of everyday motherhood tasks. We all feel you, sister.
It took me a long time to realize that my grief was not particular to me. I saw it through the Autism parents communities I am a part of. I saw it in the pediatricians waiting room. I see it in Wal-mart, Zehrs, Shopper’s. I see it everywhere. We all grieve something at some time. We wouldn’t be human if we didn’t.
Xo
The Spectrum Mom
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