Communication

I feel like a lot of my journaling is quite cyclical in its emotions and patterns. 

It’s about the same things (obviously) and I go from writing about negative thoughts and feelings and then rising above them. Then another thought or situation will arise and the negative emotional stuff comes up, I process through it, and I feel positive again. 

I suppose that is just part of the reality of life in general, perhaps sometimes less intense than other times. But none the less. It’s the circle of life. 

Its Triggers that impact my emotional stance in life. 

They can be situational, conversational, even environmental. Stimulus that trigger feelings of Trauma. 

Unleashing a tsunami of sadness , anger, anxiety, heartache, panic and fear. All those delightfully overwhelming gut punching emotions. 

I’ve become quite aware of a few of my triggers. 

Little girls and boys similar ages to what Arthur and Niamh are , are obvious ones. 

Hospitals. (I fucking loathe them.)

Feeling out of control. 

These all impact me in an emotionally irrational way .   

Emotions are exhausting anyway but having trauma responses to things makes these emotions all-consuming and completely overwhelming. They literally stop you being able to function properly for the rest of the day whilst you process them. 

Really fucking inconvenient.

When it comes to Niamh, fear has for a while, become the most overwhelming, all -consuming emotion that surrounds my thoughts.  

I’m Scared. I’m Scared of the unknown. I’m scared because I can’t fix it. I can’t control Rett, I can only do my best to help her body fight against it and I’m scared because I don’t think its enough.

I’m scared because I don’t have answers, and even scarier than that? I’m scared of the answers. 

I read an article the other day written by a mother of a child with disabilities. 

She wrote about the fact that we don’t (as parents of disabled children) suffer from Post-Traumatic stress disorder(PTSD).

That we should stop saying that we do, because there is absolutely nothing “post” about our stress. 

We suffer from “Chronic traumatic stress disorder” CTSD…and it’s “chronic” because its continuous.

I’m going to make the assumption that she’s probably pretty spot on. 

We do love labels don’t we? I think primarily giving something a name allows us to be able to look at it head on. Its more tangible.

I like to think it also give us an opportunity to pick through it. Learn to live with it but not allow it to take over. ( one hopes!) 

I’ve had a couple of situations recently that really triggered me. And I think the reason they trigger me so much is because they are actually so avoidable. 

Considering mental health and stress is spoken about so much these days it shocks me at how horrendously poor the Medical sector are at people management. 

Customer service if you will. 

I’ve consciously tried to be as independent and proactive as possible in our life pursuits. 

The NHS is, as we all know, under staffed and struggling. I think it’s always important to be aware that, if possible, you should not rely on it , simply so that it leaves space for someone else who really needs it. 

Unfortunately though somethings have to be done through referral and NHS services. 

 The complexities of Rett syndrome mean that communication is essential to help keep you from feeling over whelmed in thoughts and worries. It is a very fine line. Over whelm is easily achieved. 

Zero response from a system/team that supposedly hold answers triggers a lot.

A Lack of response for a few months, even when being chased is a whole other level. 

All that is needed is an email response saying “We have received your email , you will hear back from us within five working days”.

It can be automated for all I care but just something. Some sort of Acknowledgement.

This situation created an absolute wave of thoughts and emotions. 

For me… my level of respect for said system plummets. To trust people, to trust a system, there needs to be consistency. Trust and respect is built on pillars of communication, consistency, compassion & clarity to name just four. 

The lack of any of these creates a bleak relationship.

So there I am, feeling powerless and isolated. And quite honestly the entire situation was cementing my lack of respect or trust.

This “isolated” situation was unfortunately followed by a similar situation running parallel to it. 

Common sense or the lack of when it comes to creating an efficient and effective situation makes my blood boil. 

It doesn’t take much to communicate and check things are in place so that plans can move forward efficiently. 

Now this all might seem a little dramatic, but the hard truth is that for many of us new to parenting children with disabilities, life stands still. 

Your entire future is put on hold whilst you try to grasp hold of your “normal”, whilst tests are done so that you can have some clarity on what is to come for your child.

You are holding your breath. 

This means that the communication is needed more than ever. 

Because when you don’t have it? You feel alone, unheard, and if even possible….even more out of control. 

So whilst I sit here, having finally heard back about Niamh’s heart Results & waiting for the Gnome testing to be done. Whilst I try to park it in the back of my brain so that I can get on with my day… I’ll say this…

Just please, for the love of god, fucking communicate with us.