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The One Thing That Helped Me Battle Isolation as a Parent of a Medically Fragile Child

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For me as a mum of a child with a disability, I often felt anger, frustration, loneliness and isolation. I am discovering more and more how that affected me during Matthew’s life, but the time to really acknowledge and process those feelings never felt right.

One of the things that really helped at the time was reaching out to the parent’s and carers around me. I never even considered doing this, until after I took some others steps to take care of me. I got proper nutrition, it improved my ability to deal with stress, and it gave me better quality of sleep.

After that, I could lift my attention and gaze up from Matthew and I. I stopped focusing on how bad I things were.

I’m not saying that the change just happened. It was a conscious decision to look around and see who else felt the way I did. One of the best decisions I made over the years. What I discovered was that there’s literally thousands of other mums/dads/carers feeling those same things. An incredible world opened up. I also got connected with groups on Facebook.

But the difference in mindset that really changed things for me, was when I started to look at who I could help.

When I completely focused on my problems or our problems as a family, the black hole of isolation just got deeper and deeper. But when I focused on who I could help, the late nights doing medications, feeds or dealing with crisis, could be shared with another carer doing just the same. So we chatted about whether the redness around a PEG stoma was “normal,” or if the stool color and consistency was a sign of something more concerning. In times like that the isolation felt almost non-existent.

I know mum’s who have found the online world overwhelming and had to retreat. This is sometimes caused by what the social worker called “vicarious stress.” When people take on some of the stress of the stories that you are surrounded with. For me, it was a risk I was willing to take. I don’t take responsibility for the outcome of someone else’s situation. I am just there to share my experience.

Reaching out and being a listening ear and sharing experiences has been the most fulfilling step. It is also the step that helps me even now deal with Matthew’s passing. I know his story, my story can help someone else.

It also gives the pain a purpose.

Taking my focus off myself and asking who I can help was my key to beating the isolation.

A version of this article was previously published on the author’s blog.

A version of this story originally appeared on Caring for Yourself as a Carer.

Getty image by stevanovicigor

Originally published: July 4, 2019
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