For me as a special needs mum, the feelings of anger, frustration, loneliness and isolation were definitely part of every admission, even at times every stint at home. Sometimes even more so.
I am discovering more and more how that effected me during Matthew’s life. I knew they effected me, but the time to really acknowledge and process those feelings never felt right.
Things that helped me beat those feelings:
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, & a gave me better quality sleep. It was One Life Saving Step, changed everything.
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.
As I chose to learn the names of the familiar faces on the ward, an incredible world opened up.
I also got connected with groups on Facebook, at each stage, Global developmental delay Australia, then Global Developmental Delay International. Matthew wasn’t fitting into to any of the patterns that I had seen anywhere in those groups. I looked for other groups.
But the difference in mindset that really changed things for me, was:
“Who can I help?”
When I completely focused on my problems or our problems as a family, the black hole of isolation, just got deeper and deeper.
I met people like Kat Barlow – Flexible Freedom, & Heather Renton – SWAN. Incredibly powerful women – other special needs mums – who were also looking for answers for the question: “Who can I help?”
I wrote about the relief of finding Syndromes Without A Name.
But late at night doing medications, feeds or dealing with crisis, often there is another carer doing just the same.
So we chatted about whether the redness around a PEG stoma was ‘normal’, or if the stool colour and consistency was a sign of something more concerning. In times like that the isolation was almost non-existent.
Things to be aware of:
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.
It’s was a risk, but if I don’t take it on personally, I don’t take responsibility for the outcome of someone else’s situation. I am just there to share my experience. I know that because somebody else’s story went that way it doesn’t mean ours will too.
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 my ‘problems’ and asking who can I help, was my key to beating the isolation.