Additional Needs

I Don’t Need to be Fixed I Need to be Heard

Posted by Ceri-Ann Brown on 2nd November 2018 Additional Needs, Advice & Support

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I learned something recently that I feel is quite profound.

Sometimes when we struggle and we confide in someone we trust, all we actually want... is for them to validate your feelings, agree with you, and join you in that grief.

I got told once "I've given you a list of solutions and you're choosing to find fault with each one."

I get it, it's true, and for the person talking to me I bet it's really frustrating.

I think what we want at that time (or I do at least) is for someone to go "you know what? Yes. That's rubbish". I'm not after a pity party or the sympathy vote; just to know that you understand.

You’re not judging me, you're not fixing things, you’re acknowledging that yes sometimes things are hard and whether there is a solution to the problem or not... your feelings are valid.

You see lately my anxiety has peaked. Amy’s seizures have me constantly on edge. Every time my phone rings I'm thinking "is it school? Is she in an ambulance? Is everything okay?".

Every time I have let my guard down recently, something has happened that has pulled the rug out from beneath me and left me face down disoriented and shell shocked.

It's really easy for someone to tell you to "calm down" or "not worry." But actually, I don't CHOOSE to feel this way.

My brain makes me feel this way.

I so often run on adrenaline or exist in fight or flight mode... and until you actually can be inside that person's head and witness first-hand the physiological and psychological chaos going on in their mind... you simply do not understand.

Our most recent trauma was a couple of weeks ago. I had attended a meeting to discuss Amy's increased care and health needs and had come out feeling very emotional. Upset at needing extra help, upset that instead of respite someone can't just wave a magic wand and make this easier; but also guilt.

Guilt that I can't just do it all myself and that I rely on the help of others so much. Her dad works long hours, and it's not an option to drop her off so I can catch up on jobs or just have a moment to myself.

I drove away feeling a bit hollow. On this day her dad was off work with a bad tummy bug. The weight of the world was on my shoulders from lack of sleep, everyone being poorly, and just general bleugh-ness as I call it.

I decided to go to the shops and get myself some treats. I deserved treats. I NEEDED treats. I bought my goodies and retreated to my car.

I was just about to switch on the ignition when I saw my phone ringing. School.

Yep. Ambulance. 15 litres of oxygen, struggling to breathe. The usual scenario. I abandoned all plans and rushed to hospital. The feelings of sadness disappeared and were replaced with adrenaline fuelled terror. How scared she must feel. How scared we ALL feel.

I meet her at hospital and we are rushed into resus. Our trips thus far had never involved this. Suddenly I found myself at the back of the room as more nurses and doctors flooded in to her aid.

I felt totally and utterly helpless. I wanted her to know I was there. I wanted her to know that they are there to help her. I wanted the ground to swallow me up.

Eventually her breathing stabilised but they were struggling to cannulate her. In total it took about 13 attempts. The distress and illness brought on a seizure. She needed rescue meds... which of course compromise the breathing they had worked so hard to stabilise.

It was hell. Actual hell. I felt like I couldn't breathe. Time stood still.

We actually only ended up in for one night. IV fluids, antibiotics, and a nice lot of oxygen seemed to recharge her. We were discharged with antibiotics and sent on our way.

However, the care from home when on antibiotics usually involves A LOT of showers, outfit changes, bedding changes and so on. The physical and emotional toll can be tremendous.

Before I knew it though those days passed and she was back at school as if it never happened.

But that's when it hits me. I now have time to process all of those feelings and events. It needs processing, and storing it up is not good for you. However, trying to make sense of it all and filing it away in your brain under "sorted" is no easy feat.

I took myself to the GP. Most parents and carers will tell you that generally they never go to the GP unless absolutely necessary.

There are always seemingly more important things to do and though you'd go there in a heartbeat for your own child, you don't always have the same respect for yourself!

I got in the waiting room. My chest felt tight. My breathing became faster. The lighting started to give me a headache.

I felt like I was going to cry. "Get a grip of yourself" I told myself. I started some breathing exercises and put my music on.

Then a lady and child sat near me. She was teaching her child how to eat strawberries. On any other day this would have been a lovely moment to encounter but today it slapped me with grief. "That child is half my child's age and I won't ever get to do that".

I burst out crying. I removed myself from the waiting room, hot with sadness. The GP asked me "is leaving the house always this much of a trigger for you?" To which I replied "No."

She started me on a new medicine which I am hoping will soon start to kick in (instead of just knocking me completely sick and fatigued like so many meds do for the first few weeks!)

It's PTSD. It's anxiety. It's so many rubbish things.

Now sometimes I will tell stories like this only for someone to retort "well at least she's okay now" or "we've got it worse, try having 800 seizures a day" etc. Not helpful!! I fully acknowledge that there is always always someone worse off than you.

I count my blessings every single day and I know how amazingly lucky I am to have my wonderful boyfriend and my perfect girl. But that does not detract from the very real feelings I have on a day to day basis.

I recently started volunteering. I have met many other special needs parents with different stories to ours. I have found myself so humbled and in awe of these amazing families. It's incredible what these children and their families endure and how they've come away from it all stronger and more resilient.

It has taught me that you never know someone's story fully. You can never look at someone and assume they have a better life than you or that they won't understand your struggles.

I think sometimes the issue is that so much of my communications with people can happen via text or social media.

And sometimes wording can be misconstrued and someone may come across not very understanding or a bit dismissive when actually what you're saying does resonate, you're just feeling touchy and reading into things too far.

I have done it this morning a bit and am feeling a bit angry and hurt. It's not a nice feeling to deal with.

I have always said, people often view special needs parents as either someone to be pitied or someone to be worshipped as a hero. But the truth is, we are parents just like any other... doing what you would do too in our situation.

We aren't heroes, we're not victims; we're just dealing with our cards we've been dealt the best way we can. However we feel... is valid. Even if it seems completely irrational.

From one day to the next so many of us don’t' know what is going to happen and that can be frightening... if I seem awkward because I won't come to meet you and need you to come to me... try to understand there is a reason for this.

If I seem "flakey" (as I have been called) again, there is a reason... and if you're a real friend you'll validate my grief and join me. Then we can move on and laugh about silly things and enjoy life.