Additional Needs

Things That Keep Special Need Parents Up at Night

Posted by Ceri-Ann Brown on 5th December 2018 Additional Needs, Advice & Support

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Trigger warning: Discussion of death and anxiety.

The downside to my daughter being well and back at school is that I am granted more time to think. I often feel like my mind is trying to process 1000s of thoughts at any one time.

Sorting each thought and trying to put it away into a box. The problem is that sometimes those thoughts don't want to be put in a box or are too big for the box intended.

I am talking about some pretty negative stuff.

I am talking about the stuff I usually try not to talk about. I am talking about those really troubling thoughts that keep you awake at night and leave you exhausted the next day.

You see, I worry A LOT about death. Humans are aware of their own mortality and as such try hard to have a life full of enjoyment, great experiences, and value; and that's great. But for me, this awareness of mortality renders me full of anxious dread over what could or will eventually happen.

My main worry that I agonise over is - would it be best for us (parents) to go first, or her?

We are fortunate enough to say that our child is not life limited and is expected to live a relatively normal life span. However, a huge caveat to that is that she is prone to chest infection/pneumonia, and also uncontrolled prolonged seizures.

It terrifies me that one moment someone could be there, and the next they are not. Each chest infection warranting antibiotics fills me with concerns about her developing an antibiotic resistance and one day acquiring sepsis from us being unable to stop infection.

I worry about a routine hospital procedure going wrong, a sedation sending her heart rate too low.

I think about seizures and how we've had a year of ambulances, oxygen and rescue meds. Every cannula or blood test is a further reminder of what can go wrong and causes anxious trepidation.

I remind myself continually to remain in the moment, to take joy in our current existence and to be grateful for every well moment we spend together

But it's always there at the back of my mind.

It is a tough thought to file away because so much of our life is centred around hospitals, clinics, procedures, medicines and so on. A stranger cannot look at us without immediately thinking of "medical" issues... they see orthotics, tubes, a wheelchair. Everything about our being seems to scream out "ask us about what's wrong".

Today my chest feels tight and I am struggling to distract myself from the question "would it be best we go first, or her." She has become our entire world, she is all I know and is what I think about day and night. When she's not there she's always on my mind. It doesn't bear thinking about her not being here.

But the other option? Where would she go? Would she understand where we went or would she think we abandoned her? Would she be happy and safe? Who would look after her? Would they do it as well as we do? All that matters is that she has a great life and it pains massively me to think about us ever being apart.

I wonder what other people in our situation feel like and if they have any sort of contingency plan in place for such thing?

I wonder if by worrying so much I am missing out on the present, which actually does have a lot of amazing positives. I don't ever want to be complacent, but at the same time worrying to the extent that I do is having a big psychological and physiological impact on me.

I wish I could just not think about what COULD happen and work on what I actually can control. Sometimes the worry is so exhausting that I have to do the bare minimum to get through the day. Other days the worry is so intense that I burn out by distracting myself with tasks.

Recently it has manifested itself in me having more episodes of being very angry and irrational... for which I later on regret and feel ashamed and silly for. It's something I am working on every day and I hope that by acknowledging it to you all on here it raises an awareness of a hidden strain in our lives.

I wonder if this post will resonate with a few who have felt or feel similar to how I do.

I recently found myself frantically attempting to declutter my unworn clothes through a fear that even when I am gone, I will become a burden. I know how ridiculous that sounds, I really do.

Try living with it in your head 24/7! One big internal altercation of the side of me that is rational and enjoying life, and the side of me that is panicking about the future.

It makes me wish I could be more like my daughter, who takes everything in her stride and very much lives in the current moment. She doesn't need to worry - she has us doing that for her - I take some comfort in that.

We recently had a trip to the city walking round shops. My anxiety had peaked from a stressful journey there whereby I got lost several times and started to panic. The lighting in the shops, the tannoys, people coughing around me - all too much. The city could either have been viewed as vibrant, energetic and bustling, or how I saw it - utterly terrifying and something to be avoided.

Why had we come here?

My anxious ways had caused me to quite urgently need a wee (tmi sorry!), so I rushed to a nearby fast-food chain. The door was locked, someone was in there. We waited, and waited.

I suddenly recalled that a few months ago in this exact venue a mother and severely disabled daughter had been attacked by two random strangers in a targeted attack. I won't go into details but I remember reading it in the news and crying silently to myself about how scared they must have been and how cruel the world can be.

Up on remembering this I felt this overwhelming compulsion to get out. We rushed out of the building and I took a deep intake of breath. Relief.

A stranger appeared in Amy's face loudly shouting hello. It immediately scared me and I pulled her chair back as he was far too close. People don't always respect boundaries when someone is in a wheelchair - they forget that she can't back away when someone is too close.

He seemed to just be a friendly man being nice to my little girl. I asked her if she wanted to wave and the moment ended.  I was being hypervigilant. My fear of losing her and my fear of dying had caused me to see everything as a red flag or glowing beacon of danger. The day did eventually get better and I did calm down.

We had a lovely time.

So, I don't know. I don't have an answer to any of those questions. What will happen will happen.

Whomever is involved will cope - I already know what a resilient bunch we are. I might not be able to train her up on how to become independent like a parent of an able-bodied child would... but hopefully I can instil in her confidence in herself, knowledge of how loved she is, and for her to cope in the face of adversity.

I manage somehow, to hide my fears from Amy. I want her to see mummy happy and positive because I want that to be how we all feel. It can be very draining like you're putting on an act, but it's what works to get her falling asleep feeling safe and loved. What more can a mum ask for?