The Road Less Travelled: Another Perspective

The Road Less Travelled: Another Perspective
Posted on Fri 22 Apr 2022

Written by Elaine Schad

Photo credit Daniella Stein Photography

 

The early days

One day I came home from Kindergarten and told my parents I no longer wanted to do my weekly Occupational Therapy session, since I had found out the other children in my class didn’t have to do this.

I developed Cerebral Palsy shortly after birth, I’ve not known anything different. I have right hemiplegia (right arm and leg affected) though it’s mild enough that I went to mainstream schools and if one isn’t watching me closely, one mightn’t even notice.

In my early 30’s, I got fit - so I challenged myself to do all the things that many wouldn’t expect someone with CP to do - a 55km bike ride, I ran the city2surf twice and the most notable was playing and competing in an Oztag competition. No one ever expected that I’d be able to play a team ball sport. I recognised then that this is what I had longed to do whilst watching from the sidelines at school - Being part of a team. I wasn’t the best footy catcher (and sometimes I didn’t catch the ball) but having gone out and played anyway makes me proud. These days I’m no longer an aspiring athlete though I still jog, only to keep fit (I’m not longer timing myself to ensure I am keeping pace).

 

Returning home

In 2014, I returned home to Sydney after many years living in Europe. I was in search of a way to ‘give back’ and decided to connect with Cerebral Palsy Alliance (having used their services as a child). I found a wonderful way to do this, by being a corporate sponsor of the Krazy Kosci Klimb for 4 consecutive years. It was truly inspirational to see these young people achieve the climb and an honour to be able to support them in their journey.

 

Motherhood

Ever since I can remember, I’ve wanted to be a mother. With my CP, I knew there would be extra challenges in caring for a newborn, though it played out in a way I hadn’t expected or anticipated.

In July 2021, I gave birth to a healthy baby girl. My husband Patrick and I named her Viola.

Late in my pregnancy, I developed Carpel Tunnel Syndrome (CTS) in my good (left) hand - I had pins and needles in the tips of my fingers. For the majority of women who have this pregnancy symptom, it goes away 3 weeks after birth, however mine stayed for 3 months post birth. I did start to wonder if I was going to be part of the 2% where CTS was going to be permanent. Only having one good hand, it was unnerving and particularly distressing not to having feeling in my fingertips.

A few weeks into Viola’s birth, another challenge awaited me. A previous (left) wrist injury I sustained during my Oztag days resurfaced - having been hurt several times, it left my wrist weak and ready to be exploited. The repetitive nature of caring for a newborn, particularly supporting her sleepy head during breastfeeds took its toll. Every time Viola woke in the night, I would be greeted by a shooting pain up my forearm for a few seconds while the blood began circulating and reached my arm again. I wasn’t in pain all the time, but certain movements aggravated the pain, including when I had to pick up Viola.

With this new injury, my CTS took a backseat and I almost forgot it was there. I was getting my wrist treated and my practitioner said it would get better quicker if it got rest. With only having my left arm to rely on, rest wasn’t an option. Viola still needed me. Reflecting back on this time, my mental health was certainly affected. It left me feeling vulnerable. I never had dared imagine what it would be like to ‘lose’ my left arm and I was now getting a glimpse of it.

Meanwhile, our little girl Viola was thriving. I kept my focus on caring for her and meeting her needs. I found my own rhythm and technique in doing the routine things like changing nappies and clothes and breastfeeding. I also started taking her to the potty (part-time) when she was 3 months old. At first, it was a two person job but with time, I found a way to do this on my own. It required me to be organised beforehand, so I’d have everything I needed within reach. Just as I have managed life up to this point, I knew I’d find my way. I found my way to put a sock on her wriggling foot and a bodysuit over her floppy head while supporting her little body. I won’t lie, it takes effort and doesn’t look graceful - but I do it nonetheless.

Bath time is something that Patrick and I still do together with Viola. When’s she’s done, Patrick will hand her to me and I wrap her in a towel, dry her and put on her clothes. We also recently started taking her to the pool. Like bath time, we do this together. I think I’d be able to it on my own (if I really needed to) - though it’s definitely much easier handling a wet baby with two parents.

I noticed I was using my right hand more than ever before. Prior to Viola’s birth, my right hand didn’t get used much as it was quicker and less effort to use my left. However, now when my left hand is busy elsewhere (holding Viola, eating etc) - I need my right hand to pick up that toy or to reach for a tissue. How useful it is to have two hands, I think to myself!

Under regular circumstances for me, getting Viola in and out of the carseat was not the easiest - but with my wrist injury, it was not possible for me to do so. It was too awkward and painful. This limitation again affected my mental health; prior to giving birth, I could take off in the car and go wherever I pleased - and now I felt part of my freedom had been taken away, unable to take my baby in the car with me.

I’m fortunate to have a loving and supportive husband in Patrick - he pushed me to try to get her in and out [of the car seat], at every opportunity. There were many attempts where I was unsuccessful, feeling frustrated and wincing in pain with tears in my eyes, wondering if my wrist was ever going to get better.

Patrick also suggested that I still go out on my own and ask people around me for help [getting Viola in and out of the car].  Reflecting upon this, I think it was a combination of pride and my mental health state that prevented me from doing this at the time. Viola’s sunny disposition lit up our lives and my injuries were a small price to pay for the joy I felt. I’d do it all over again, without a doubt.

As my wrist improved, I started to regain my confidence. At first, I practised in Patrick’s car - his car door is bigger and therefore more room to get a wriggling baby in and out. Viola was a champion in all of this, she was so patient with me, as if she knew this was something important for me to master.

Eventually, I was able to get Viola in and out of my car when she was 7 months old. I was elated. I felt as free as a bird and soon there was an opportunity to go out on my own with my little girl. A mother from my mother's group, Annie invited me for a walk in the park - one that I had to drive to. As we walked, we talked about our girls and the experiences we had over the months. Annie mentioned that it had only been recently she was able to go out on her own in the car with her daughter - her little girl wasn’t a fan of the car seat. I told Annie that it was my first time that day that I was out with Viola on my own, with the car.

Since our first outing to the park, we’ve done a few more; the freedom and independence I feel is indescribable.

 

Looking ahead to the future

Viola will rely on me for many years to come. In time, she will understand she will need to help me a little more than she has to help her father. She may already sense it.

I realise my story is one that is not often told and a road less travelled. I share my story, not to highlight my limitations but the exact opposite, despite the challenges I’ve faced so far, with the support of my husband, we are raising an energetic, curious, happy little girl.

To all the families, carers and friends of those with CP, I ask of you; please celebrate our successes with us! It means more to us than one may think. Something as simple as being able to finally strap my daughter in the car has changed my outlook on life and my world.

Saturday, 3rd December marks one of the biggest days in the disability community’s calendar, International Day of People with Disability. This year's theme celebrates how innovation has supported more inclusive lives - something we at CPA champion every day!

Thank you for your continued support this year. Here are some highlights of what we have achieved together, and information on our holiday season closure and reopen dates for 2022/23.