Error message

Deprecated function: Array and string offset access syntax with curly braces is deprecated in include_once() (line 20 of /home/tottenh/public_html/studiodurante/includes/file.phar.inc).

Emotional rollercoaster of disabled parenthood

Emily Clacy, from Reading, UK, who has a spinal cord injury, describes her experience of some of the practical and emotional aspects of disabled parenthood.

I'd heard mixed stories from friends and family about how long they'd tried for a baby: some had fallen pregnant almost immediately but others had waited years. My husband Tim and I tried not to get our hopes up about it happening quickly for us. We decided to start trying just after the New Year, to get the celebrations out of the way and stop drinking wine! So we were surprised when just a few weeks later we discovered I was pregnant.

Anticipating challenges

I have an incomplete spinal cord injury and am a wheelchair user, but Tim is able-bodied. We knew there were going to be many new challenges to face, not only when the baby was born, but through the pregnancy and birth too.

In my anticipation of having a baby, I thought a lot about the practical issues of pregnancy and parenting. I studied and practised design before my accident and so the practical elements were what I thought of first and foremost. What I had never anticipated was the emotional rollercoaster I was about to embark on.

Before my pregnancy I researched as much as possible into things like the effects of the medication I took on the baby, the mobility issues I might face through pregnancy and the pieces of adapted equipment available to enable me to be as independent a parent as possible. But I never once paid mind to the hormonal changes, the effects of little sleep and the eternal guilt complex that comes with being a mother. To be honest, if I had, I might have taken a very different approach to my research and I now realise that the nine months of pregnancy (or in my case eight) are just a blink of an eye compared to the lifetime of raising a child.

Things weren't easy in the first few months. It felt a little like everything was just going on around me. I couldn't pick Freya up by myself and needed help with every aspect of her care. I'd gone from being independent (something I'd fought hard to achieve), to being reliant on others once again. Someone had to be with me 24/7 in order to help me attend to my newborn baby.

Finding the right person for the job seemed like an overwhelming task. I felt I didn't need a full-time carer or a nanny. I needed someone who could come in to my home when my husband was at work, someone who would assist me in caring for Freya and help me overcome the challenges I faced, without taking over or pushing me out.

Somebody mentioned doulas to me. Doula is a Greek word that basically means mother's help. I looked up Doula UK (www.doula.org.uk) a non-profit association, and found two lovely ladies that lived locally and could work the five-day week between them.

Breastfeeding

I was determined to breastfeed Freya as I felt this was the only thing I could offer her that others could not. It was my way of bonding with my child and establishing my role as a parent. It didn't come easy though and I struggled for four months before the two of us became any good at it. All the odds were stacked against us – Freya was premature, I'd had an emergency caesarean section, my iron levels were low and she had a tongue-tie (a congenital structural abnormality of the tongue). Every time I tried to feed her and failed (in my mind), it only added to the emotional trauma. But with perseverance, determination and a lot of good support, I managed to feed her for just over a year. My husband Tim was incredibly supportive and helped me with the night feeds.

Independence

I wanted to be as independent as possible in caring for my child and made sure I was present for every meal or milk feed, nappy change, bath and play time. I was constantly frustrated by poppers and sticky tabs getting the better of me.

As time has gone on, I've realised that the practical tasks aren't necessarily the important elements in raising my daughter. Being her emotional support, and controlling things like what she eats and the co-ordination of her care, are far more important to me now. As well as this, I could struggle on being fiercely independent, but we'd never get out of the house in the morning if I had to do it all myself!

One thought I've held on to since the accident that caused my injury over 11 years ago, is of something my Dad said to me. I remember being told by the consultant at the spinal unit that I could expect to spend about a year rehabilitating there. This felt like a lifetime ahead, but my Dad said, “It's only a year of your life and in the grand scheme of life that's nothing.” I applied this thought to those first few months of Freya's life and it was what pulled me through those tough times.

I now realise that ‘independent’ doesn't necessarily mean on your own. If being independent for you means that you need someone else's hands to do the practical things for you, then so be it. If it means instructing others to do things how you would like them done, then so be it. If it means becoming a control freak (my husband would say that about me I'm sure), then so be it.

Golden moments

Freya is nearly two now and I can't believe how quickly those years have passed. The first six months felt like forever with the interrupted sleep, constant nappy changes, feeds and cleaning. I've never been so tired in my life. But I wouldn't change that time for anything. I can't remember my life before becoming a parent; it pales into insignificance. I'm so happy and proud to be a mum. In amongst all the hard work are absolute golden moments, moments that melt your heart and make you want to cry with happiness.

I often used to wonder if I'd miss out on certain aspects of parenting because of my disability, but when I talk with my able-bodied friends who are mums, I discover that my frustrations and worries are much the same as theirs. I'm sure each stage of my daughter's development will bring with it new challenges for us both, but we'll find a way to muddle on – after all, that's what families do!

What I've learned so far is this: you will never be a good enough parent in your own eyes and you will always feel that if anything is wrong, it's your fault. The good thing is, every parent (disabled or not) who cares about their child feels exactly the same and the only person judging you is you. If you can accept this, you'll be able to get on with just doing the best you can.

First published DPPI Journal, Issue 74: Autumn 2011

No

Want to share your thoughts about this?

(If you're a human, don't change the following field)
Your first name.
(If you're a human, don't change the following field)
Your first name.
(If you're a human, don't change the following field)
Your first name.