Being a disabled parent: unlocking your heart

CAIRO - 14 June 2017: There are no two ways about it, being a parent is hard. But it can be even harder if you have a disability. Sam Smith tells us about his experience of becoming a dad – how incredibly hard he found it, but also the rewards that come with it.

Five words that are supposed to fill you with excitement, “should we have a baby?” can terrify someone with a disability. When these words were asked to me, I looked at my partner and could see the overwhelming joy on her face. Although I too was filled with excitement, a million concerns were dominating my mind. “What will the child think of me?” “How will I be able to provide enough for the family?” After months on this constant roller coaster of emotion, my first child was ready to come into the world.

Being beside my wife the entire time during the birth was something that years ago I thought would never have occurred. As my beautiful baby was born, and I watched him absorb everything that was around him, I smiled immensely.

My wife looked at me and said; “do you want to hold him?” My disability tends to wreak havoc on my arm muscles, so there’s no way I could hold him on my own. That was the first moment it hit home just how much harder being a parent was going to be for me. Suddenly my whole world went from being so bright and full of happiness, to suddenly dark and cold.

But before the true feelings of sadness could fill my soul, my terrific wife, as tired as she was, sat up with all her might and placed the baby in my arms, all while bracing the baby against her chest. After years of not really knowing who I was, those few seconds of holding my child as best I could filled my life with purpose.

That moment was incredible, but once getting home from hospital, it soon became clear again how little I would be able to do, and that really started playing with my mental well-being. Watching my wife change, feed and do everything for our baby made me feel next to useless. Seeing what needed to be done but not being able to do anything a ‘normal’ parent would do was awful. Although my hands were free to move, they might as well have been tied behind my back.

Lying in bed one night, I heard her get up to feed the baby. She hadn’t slept in four days, but yet she gave me a smile and kiss on the cheek before she got up to attend to our son. When she got back into bed, she helped me to roll over. Not only was my amazing wife looking after our newborn, she was also looking after me, too.

Caring for me and our child
As cerebral palsy is with you 24/7, my care and needs are done by my wife. This hurt me so much. I knew how busy she was with the baby, and then she had to feed me and take me to the bathroom as well. Who was the baby here?

Not once did she complain or show an inkling that she was tired or annoyed with me. I felt as though I was supposed to be the ‘guy’ in the relationship. But how could I show that? There was nothing I wouldn’t do for our son and for my wife. My heart is their heart. But I was unable to physically do anything. It felt like my heart was locked in shackles.

Thoughts of great depression and sadness began to creep into my mind. This really affected my family relationships. I began to get snappy with my wife over things that really didn’t matter. All that did was put extra stress on her and make me feel even more depressed.

As my son started to get older I found it hard to bond with him. Not being able to throw a ball or do any ‘normal’ farther/son activities was extremely difficult. Instead, the activities my son and I took part in were him getting my wheelchair unstuck from a snow bank, or him taking me to the bathroom. That’s right, when his mum was buying groceries or working, my amazing boy had to help his dad during these very personal moments. He didn’t think it was at all odd, just a way of life. After all, it’s what he had grown up with.

When I walked with him to school I could feel his friends looking at me. All they could see is the chair. It broke my heart.

But then something changed. Every day, as my son walked into school, he’d give me a smile that truly warmed my heart. It suddenly sunk in – I do more for my family than I’ll ever know just by being there and by loving them.

More and more I started to see this positive feeling confirmed. I was having another one of those ‘feeling helpless’ kind of days where my wife was running around doing the laundry, cooking and cutting the grass. Then my son called me outside. He looked sad, so I asked him what is wrong. He told me that he liked a girl at school and didn’t know what to do.

I know I may not being able to do certain physical activities, but it reminded me that I could give my son something much more important – advice and guidance. With joy consuming my body I smiled at him and said: “Just be yourself and things will work out.” Then my special little boy said something that was truly magical: “One day I want to be like you and mum.”

Those words were the key to unlocking the shackles on my heart and letting my soul become once again bright. The biggest thing you must remember when being a disabled parent is to let your disability show your child what ‘ability’ is, what they can do and what can be achieved.

This article was originally written by Sam Smith, published in Disability Horizons.