Hand to Hold's Official Blog: Written by Parents for Parents

The Mother I Didn’t Want To Be

I spent a year waiting to see if I could live with the man I married (he didn’t live in the same country until a month after the fact) before we considered having children. Three, to be precise. One to complain that they were the oldest child, one to complain that they were the youngest, and one to complain about being the middle child.

Now I have, and will only have, one child who doesn’t complain about being an only child. Torran has Autism and is completely happy with his own company.

But I’m not.

I didn’t want to be the mother who had to heap yet another diagnosis on my child. Hadn’t he been through enough already? Sure, he was thriving, but he faced a lifetime of surgical risks and life threats. Each new diagnosis set back my emotional coping for months at a time.

VP shunt infant floor play

Torran plays with his ball, not bothered by his enlarged head and swollen shunt site.

Then, when I realized that help for Torran doesn’t come without a diagnosis, I didn’t want to be the mother who lived in denial, afraid to label her child. Sure, he was an only child. However, his inwardly directed sense of self went beyond being an only child. As a baby, he didn’t “show” me things, as other babies did for their mothers’ approval. I was always right beside him, protecting his over-sized hydrocephalus head with it’s precious brain, and I missed noting that he lacked that developmental milestone.

Prematurity marked my child for life. For his first birthday, Torran required hearing aids.  When he was two, the doctor confirmed his Cerebral Palsy. At three years of age, Torran was diagnosed with Autism. I didn’t want to be the mother who pushed her child to succeed, just because I feared he would fail.

But, I am that kind of mother.

Torran proved the doctors wrong when they told me his brain bleeding (grades 3 and 4 IVH) would result in paralysis. I worked with him for 45 minutes once or twice daily for two years to make his brain build the connections I desperately wanted him to have. I moved his body in ways so foreign they seemed like I was torturing him when he cried. And, if he didn’t have a great response on a given day, my heart broke thinking he’d never gain the motor skills his damaged brain threatened to keep from him.

The same may not be true of his Autism. We’ve been living with it for about three years. Most days, something happens which reminds me that he has so many more steps to take than other kids. Perhaps he’ll be repeating the same phrase from a movie over and over again while he’s playing with an unrelated toy. The other day, he banged his head and his pain threatened to make him bang it again. I had to restrain him from hitting himself.

At school, he wrote a letter to himself because, as he told me, “I don’t have any friends.”

Last Friday, I organised a play date to remind him that he does have friends, even if he can’t realize that himself.

walking

The Long Road Ahead

And, I’m glad that I’m that mother. Torran didn’t give up on himself when he was the baby in a box. I’ll never give up on him. Encouraging him, or in some cases manipulating him, to push beyond the expectations his prematurity came with moments of great joy, frustration and, sometimes, anxiety of my own. His accomplishments may go wholly unrecognized in the wider world.

In being that mother, I’m giving my son a gift, the power of which may not have been the same were he a full term child: the understanding of perseverance. His body wanted to survive the torments of the NICU. Now, I’m hoping his heart recognizes the benefit of sticking through the rough times and facing challenges, no matter how hard. No matter the odds, or how many times we fail, the act of working through difficulties has value in and of itself. Sometimes, the struggle is worthy of more celebration than the end result.

And if his struggles come every day, then I’ll be the mother who helps Torran back up, supports him side-by-side as I encourage him onwards, and stands behind him with the biggest smile (if and) when he reaches his goal.

Lesley Donaldson-Reid About Lesley Donaldson-Reid

Lesley Donaldson-Reid (ON, Canada) is a nurse and writer whose personal blog focuses on her life, special needs and travel with her family. Lesley is the author of Growing A Rainbow, the painful and uplifting narrative about Torran, born at 26 weeks and 6 days from sub-chorionic bleeds and oligohydramnios. Torran has hydrocephalus from grade 3 & 4 IVH, PVL, autism, audio dys-synchrony hearing loss & cerebral palsy (and other medical stuff). Connect with Lesley: Twitter, Facebook , Pinterest, & Google+.

Comments

  1. Perhaps the most powerful and powerfully accurate sentence I’ve ever read, “His body wanted to survive the torments of the NICU.” describes our NICU experience exactly. Carry on, warriormama!! xx Angela

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