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Being a mother to a child with a disability

Motherhood has been the wildest ride of my life, one I can’t imagine missing out on, despite the MANY challenges. I always loved children and from a young age I relished spending time with them. Perhaps I was drawn to mothering children because I was an only child and never had a sibling to play with, or maybe it was just in my nature. Either way, it was this love of children that ensured that there was never any question that I wanted children.

Mother's Day - Have Wheelchair Will Travel

Being a mother to a child with a disability

I was fortunate to be able to have two gorgeous children. Braeden was a challenging baby, never sleeping (nothing’s changed there) and with a terrible case of reflux which caused a never-ending pile of washing. None of us know what our motherhood journey is going to be like and while we may hope that it’s filled with Hallmark moments, the truth is, most of us experience a mixed bag. For many who have children with a disability, it is a roller coaster ride of emotions.

Mother's Day - Have Wheelchair Will Travel

Many of us in this community experience the toughest moments of all, including an elevated level of parenting (well beyond the regular timeframe), worry, and for some, unimaginable loss. It’s an emotional ride and a time of learning to reframe the image we had of life for our child and ourselves. The one thing that has been no different in my parenting journey with Braeden and Amelia is the fierce love and protection I feel for them. In fact, I remember when Braeden was diagnosed with cerebral palsy, my greatest concern was the way others would limit him when they learnt of his diagnosis. I knew that Hubby and I had boundless love for him no matter the challenges. I just wanted to wrap him up in cotton wool and keep him from the harshness of the world. Of course, that’s impossible to do if you want your child to fully experience life and there began the yo-yo version of mothering. Letting the invisible string that connects Braeden and I lengthen a little for him to experience life but pulling him back sharply into my embrace when things were tough. To this day the yo-yo continues, but the string is at full extension now. I guess the next step is to cut the string and give Braeden his version of full independence, but I don’t think he or I are ready for that quite yet.

Mother's Day - Have Wheelchair Will Travel

I constantly feel I’m walking a tightrope. As much as we all love our children, we want them to be independent, to spend time with us because they want to, but ultimately for them to be able to exist without us. This is the concern that keeps me awake at night the most, it has since the day of Braeden’s diagnosis. How do we set him up for success without us? This is made all the harder by the fact that he is so family orientated. He may be Mr Social, but his family is everything to him. I hope like most things this is resolved over time and becomes one of the obstacles that we look back on and feel proud we managed to negotiate. If you have any tips or would like to share your experience, please do so. I’m sure I am not the only one that lies awake worrying about the future when we are not here to advocate for our children.




Mother's Day - Have Wheelchair Will Travel

Of course, my motherhood journey has been vastly different with Amelia but still a roller coaster. Now we are best buddies who love to spend time together curled up on the couch watching trashy tv or chatting about her studies and work goals and achievements. We love travelling together and can laugh till our bellies ache. She is an amazing support with Braeden and watching their relationship has always been such a joy. Basically, both my children have taught me much about life and myself and I will forever be grateful for my motherhood journey.

Mother's Day - Have Wheelchair Will Travel

One of the greatest lessons motherhood has taught me is that I can’t control things. And if I ever feel I’ve got it sorted, the universe laughs in my face and reminds me that I am merely human and still have more to learn.

Mother's Day - Have Wheelchair Will Travel

I’ve also learned that I’m fierce when I need to be, persistent to the core and have a big problem with anyone telling me something isn’t possible. I have an empathy that now makes me a total sookie la la with tear ducts that overflow at the drop of a hat. I think outside the box more than ever and challenge others to do the same. That comes back to the whole having a problem with people saying something isn’t possible. I worry far more than I should because we’ve experienced being the one in whatever number and that means statistics don’t really mean much now because someone has to be the one. I know life is precious and I’m conscious that ever day should be lived to the fullest but I’m still working out how to balance caring with doing so. I’m human and I am constantly learning both about how to be the best mother but also the best version of myself. It’s important for me to be Julie as well as a good mother. Does that make sense?

Mother's Day - Have Wheelchair Will Travel

So, today as we celebrate a belated Mother’s Day, I am reminiscing on all the fabulous times I’ve shared with my own mother and the great role model she was to me as I was growing up. I’m thankful that I am able to be so present in my own children’s life and that I’ve shared so many special times with them both at home and when we travel. I’m celebrating that my sense of humour and the support of Hubby has been there to help me through the difficult times and that and an incredible bunch of therapists and medical professionals have been by my side to guide me. Most of all, I’m celebrating that I’m still standing despite all the curveballs.

Mother's Day - Have Wheelchair Will Travel

To all the mothers out there, I see you, I know you are looking (mostly) calm on the surface but paddling for your life under water. It’s not easy, and at times heartbreaking, but I hope that motherhood has given you the chance to experience a love like no other.

A belated Happy Mother’s Day to you all.




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