Conversations around parenting with a disability

Yesterday our lovely Sue posted an article on Facebook about the ABC radio series "We've Got This" about parenting with a disability. It really raised some feelings in me made me think about what I'm getting myself in for.

Exposing the misconceptions about parenting with a disability

In my whole life I had three things that I wanted in my life (in no particular order):

- to travel

- get married

- have children

I did plenty of travel (and still do), I got married to a wonderful man and we were set to start our family when I had my strokes. And in my head that was the end of my dream to have a family. Apart from the physical disabilities like walking and using my right arm, there was the cognitive problems and the emotional and psychological challenges that I was faced with. To a certain extent the physical and cognitive issues were addressed through the hospital. I can walk again, I can do most physical things for short periods of time without too much difficulty.

But the emotional and psychological challenges were largely ignored. And as time has passed I have noticed that this is a trend across all disabilities. Two of my nephews have autism and a lot of their therapy focused on the same areas while the emotional and psychological challenges were ignored. Earlier this year I watched part of the series 'Employable Me' and I really have no idea why we as human beings haven't been able to include people with disabilities into our society so that they can enjoy a meaningful life.

Apart from anything else, intimacy has been a huge hurdle for me to overcome. I couldn't stand to be hugged for too long, certain sensations were not comfortable and it took a long time to reinvent our marriage (and yes, I think my husband is a saint!).

Since I had my stroke, I've been searching the internet trying to find information about parenting after having a stroke. And apart from medical case notes and jargon, there is literally nothing out there. Earlier this year when I was diagnosed with endometriosis and told that there was no way for me to conceive naturally, I thought that was the end of the line for me. But by some miracle, I did manage to get pregnant and I'm now 14 weeks. And still there is nothing out there. No comforting books telling me what I can do to manage the right arm weakness. No advice for how to look after a toddler while trying to manage a household.

Some things I worry about:

Will my child understand why they can't understand me when I stutter?

Can they understand that I can't always get down and up off the floor to play with them?

Am I letting them down by having to rely on others to help me out?

Am I putting too much pressure on my husband and family to pick up my slack?

Am I up for this??

Nearly 6 years post-stroke and I still carry a lot of self-doubt and challenging thoughts. My first goal this holidays will be listening to "We've got this".

I remember a turning point for me, watching this clip from promoting the Rio Paralympics in 2016. Seeing a woman with no arms handling her baby made me think: if she can do it, what's stopping me?

I just wish that as a society of human beings we can be more inclusive of people with disabilities. Individually most people are understanding, but as a 'herd', we tend to ignore what we don't want to see.

Time for the world to see something different. We're not burdens. We're important members of society.