A Harsh Reality

That moment when you realize your child’s diagnosis is far worse than you originally thought. It was almost as if I couldn’t catch my breath.

Like someone was choking me. I cried as if someone had died.

It sounds harsh, but trust me when I say that’s how it felt.

I always knew my son Isaiah was special. From the moment he was born, I knew my boy was going to be somewhat different and not live a completely “normal” life.

That was my Mom gut instinct. He was born at 32 weeks gestation weighing 3.14 pounds.

His identical twin brother Liam was born second, weighing 3.12 pounds. Isaiah was born with fluid on the brain, medically known as Hydrocephalus.

He was surgically shunted at 3 weeks of age to relieve the pressure on his brain. Over the following 10 months he’d have a rollercoaster of a time with that damn shunt.

I honestly don’t recall a lot from that time frame. But when I reflect and see photos I do know that at that point in my life, I became a whole different person.

I morphed into some sort of Mom robot. Repressing feelings, numb, and being on auto pilot were my coping mechanisms.

What I do know is the following years would be the most educational, rewarding, yet emotional years of my life.

I had struggled with mental health for as long as I can remember and from the point my boys were born I felt like I had a good handle on things. My world began to rock when Isaiah was flagged for possibly being Autistic.

I had actually studied Autism and had a good sense of what to look for and was actually stunned when his neurologist mentioned the possibility. She was bang on and he was officially diagnosed at 2 years old.

It’s been a ride of emotions since then.

My boys are now 3 years old. Liam is neurotypical and has quite the personality. Isaiah receives one on one therapy daily and is progressing wonderfully.

His language is developing and he is an absolute ham. Despite his hardships and struggles he remains a happy little boy.

The night I realized the severity of his diagnosis was a doozy for me. Isaiah always wanted to be left alone at bedtime.

He would repeat “night-night” over and over until I’d leave.

On this particular night he accepted me into his bedtime routine and said “sit.” I sat and listened to him chat to himself for over an hour.

I couldn’t believe I hadn’t noticed this before. He “scripted” tv shows, conversations, sayings, very detailed things from his day the entire time.

I cried, hard. Mostly from guilt. I felt guilty for not realizing he was somewhat trying to communicate with me.

What shocked and hurt the most was his lack of awareness to my emotion. He didn’t even look at me.

He was completely in his own little world and that hurt a whole lot. I haven’t quite been able to emotionally recover from it.

I feel sad, hopeless, and extremely anxious most of the time. Why? Well, mostly because it was a kick to the teeth.

I realized at that point he wouldn’t be a “normal” child. He likely wouldn’t have relationships, marriage, children, or understand emotions.

That’s a hard one to swallow and I continue to struggle accepting this.

I am medicated for a number of reasons and have been for a long time, and now have counselling on a weekly basis. It is beginning to help and I know I’ll be ok, but it’s a struggle.

I decided to share a my story. Primarily to validate my feelings, my stress, and emotional fluctuations. To tell myself you have a right to feel this way.

I genuinely hope writing will help me heal and cope much better than I have been. But also, to those in similar situations, please know you are not alone.

Reach out, write about it, vent your feelings. The more we share the more we cope!

Written by, Gena Franco Lavigne

I am a single mother, struggling with mental illness. Raising two boys. One with hydrocephalus, global delay and autism. You can follow our story on my blog at Never One Without Two.

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