My journey to parenthood

Written by Brenton Smith

When I lived by myself with friends, Chrissie was my friends carer, we didn’t have much interaction. However, when I then moved into a SIL apartment building, Chrissie was a worker there. We started talking a lot more and got to know each other quite well. We know this is totally frowned upon, but you can’t help who you fall in love with!

My decision to become a father wasn’t easy. In the past, I always said to myself and to Chrissie I didn’t want kids. No, more like I didn’t want to bring kids into this world as I was scared of the fact that they may have MD like I do, and I didn’t want him or her to go through what I did growing up. Also, the fact of me having MD that I may not be around to watch them grow and them growing up without a father. My wife and I had a lot of things to consider.

I guess what changed my mind was definitely not a quick or easy decision. We spoke about it for a long time and even after our first IVF appointment, we still didn’t go ahead with any decisions for a few months while we spoke about it some more. Chrissie made me feel comfortable and secure enough to really believe my dream of a family could actually come true. She encouraged me to never give up and the fact she didn’t care if the baby had a disability – she would still love him or her unconditionally as she does me. I didn’t want to give up because I thought that maybe something might go 100% right when we had the right mindset and a loving and committed relationship.

We were offered genetic testing, but when we found out the baby was a girl, we decided not to go ahead with it. Neither of us was going to have a change of mind at that stage about her, regardless if she was to have a disability or not. We did have issues with a “genetic expert” at the hospital telling us that we had to have an abortion in case the baby was disabled and her stating that people with disabilities don’t have a quality of life. We had to teach her about the quality of life for myself and other people I know with disabilities. We were very upset by this and tried to explain to her that we didn’t care if she had a disability or not.

River will be a carrier for MD because of my genes. Her being a carrier is scary to me and is a conversation we will have to have with her when she’s older.

I have had to extend my services with my support workers and introduced new workers into my schedule, which is not always easy when I had to trust new people with not only my care but also my daughter’s wellbeing. My whole thought process changed to not only worry about myself anymore but about her.

I have had to deal with the baby bonding with these workers more than me, though. It is a struggle to know that they can give her what I cannot physically.

I have struggled from the beginning with feelings of inadequacy because I have struggled to bond with her. I cannot physically pick her up or cuddle without assistance when she is upset or restless. I have had to come up with ways of being able to settle her when my wife is at work or not at home. For instance, I ask my carer to put me on the lounge or in my bed to hold her or she settles quite well in the pram if she is next to me and facing me with my arm extended on to her.

I don’t care what other people outside of my family and friends think. The people around me are supportive and try to help where they can. I try not to let other people and their judgements bring me down. I actually have not had an experience of someone being disrespectful or rude to me or my family.

There are some ups and downs emotionally, but I love being a Dad, and it’s the most rewarding experience I have ever had. Having a wife to support, encourage, and help me bind with the baby helps so much.

My advice to others is don’t give up on your dreams and what you want to do or be. If you want to be a parent and you have MD, it is not an easy role, but it IS rewarding. It IS possible. Don’t let having MD stop you from doing anything you want to do. You only have one life – be it short or long, make the most of it, and leave a legacy to be proud of.