Parenting Kids With Disabilities Is Not Always About Having the Right Mindset

You might have heard this before: “Change your thoughts and you can change your world.”

Mindset is a powerful tool in our personal journey through life’s up and downs. Personally, I have challenged my own experiences to find a new perspective. However, there are some moments that no matter how much you fight for the light, the positive re-frames, the “it all happened for a reason” vibe…. nothing can shift your mindset from the experience at hand.

Try telling a mum who is holding her child through their 40th life-threatening seizure, or comforting their child through a harrowing round of chemotherapy or administering CPR on their 2-year-old.

The reality is, when your child has a serious health condition, it can be terrifying. The level of intensity peaks through the aforementioned examples. When it is as black and white as life or death for your beautiful child, mindset can take a back seat, at least for a moment. I want to shed light on the darker side, the uncomfortable side, the side that hurts so many mum’s and dad’s all over the world.

Why?

Because I always come back to one thing: that no matter race or religion, through history humans have always shared a similar innate wish when brining new life into the world — collectively we all just want our children to be born healthy. So when health is taken away from our most beautiful creations, our children, it challenges us to our core.

Whilst I am all for new perspectives, new paradigms, new shifts; I will always honor the adjustment every parent needs to go through as they take on this new role of parent to carer, and in some cases full-time carer for the rest of their child’s life.

I want us to hold space for these families in a way that allows them to be seen, heard and supported. In sharing my experience of having a beautiful child who also happens to have a life-threatening condition, I know what it’s like to grieve, to worry and to hurt. I also know what it’s like to transform and heal and make the most of this incredible unique motherhood experience. Yet let me share with you something that made me check-in again.

I attended a local doctor’s appointment to get some medical letters for my child for equipment funding. After talking about my daughter and her current health issues, the doctor paused, looked me straight in the eye and asked, “How are you Natalie?”Guess what I replied? “I’m fine, yes I’m sleeping better. Yes, thank you I am fine, I’m OK.”

But here’s the truth, in that moment I was actually holding back a flood of tears, maybe oceans, I am not too sure. I was surprised by my internal backflips, the knots that started to create in my stomach and the pinch in my heart.

It reminded me that just under the surface of so many mama’s who are juggling serious health issues with their children, we rarely stop to take care of ourselves. Even with all the tools I have as a yoga and meditation teacher, a coach, a speaker and writer, at times I forget to really check in and ensure that I am OK. I took the doctor’s compassionate question as a little nudge from the universe to really stop and reflect.

How am I?

For so many of us we are doing great, seriously, we’ve got this parenting kids with disabilities or chronic health issues gig nailed. Yet just under the surface the tears, the worry, the grief — it can creep up when we least expect it.

So what do we do with these sudden emotions that surface? How can we find solace in our child’s suffering? Because in some cases, our beautiful children do experience suffering enduring major health complications.

For me, mindset is the light I keep reaching for when it gets dark, I believe our situations stretch us beyond what we think possible as we expand into this new role. Yet, for a an exhausted mama who has spent her nights in hospitals with a very sick child, positive mindset may be difficult to authentically take on.

So while mindset is a powerful tool and one I know most parents raising children with additional needs naturally evolve into, I wanted to acknowledge that sometimes we need to honor the hard stuff. That just because we can’t find the silver lining on certain days, we are not failing, we are not playing the victim card. No, far from it. We are just experiencing the reality and fullness of our situation.

We are responding in a human way to a situation that is indeed very challenging, yet holds the capacity for deep profound growth. So please, allow me to ask you mama, “How are you?”

And if you are going through a rough patch, let this be a gentle but firm reminder to reach out and ask for help.

Remember, you are living through a situation that humans since the time immemorial have wanted to protect their child from.

So reach out, seek support and shine.

A version of this post originally appeared on Miracle Mama. You can follow Natalie on Instagram here or Facebook here.

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Thinkstock image by vicvic13