It would be an understatement to say that the last few months have been chaotic. I have been afflicted with major writer’s block too but thankfully the lovely folks at Firefly have been more than patient and understanding!
Recent events have mainly comprised of a few hospital admissions, some chest infections, seizure activity, hideous feeding issues, ph studies, EEGs, complaints to PALs chasing tests, and the usual physio, speech and language, dietician reviews, pediatric consultations, TAC meetings, seating clinics, equipment reviews occupational therapy, sensory support etc.
In addition to this, I can’t help but feel my mental health has taken a turn for the worst and I have been feverishly trying to address this issue with all of the fight that is left inside me.
I have been almost tenacious in my approach to make things better and it seems I take one step forwards and two steps back. My health visitor has been urging me to get CBT (cognitive behavioural therapy) and the stubborn part of me has refused for months. A few weeks ago I finally made that appointment with the GP for a referral.
How wrong I was.
I was in the car with family and I felt my chest get tighter and tighter, I actually thought I was having a heart attack. I tried to steady and slow my breathing and even opened the window to let some air in.
No good. I began to hyperventilate like never before, I went dizzy, I felt sick, I thought I was dying.
Why did this happen? It happened because we tried to have a nice family day out. Amy does NOT like days out.
She hates her wheelchair, she hates it all. She doesn’t want to observe the world around her and becomes very dystonic and angry.
The more she cries the worse her reflux gets and she panics herself choking. Everywhere we go we take a giant bag of toys and an iPad with us along with all the other luggage she requires and even this is rarely enough.
As we walked around the grounds of this beautiful place I couldn’t help but notice all of the other children her age running around, climbing up trees, trying out their new scooters, pointing out things that interest them.
This is foreign to me.
In spite of my best efforts, I simply cannot get her on board with these trips.
When we sat at the coffee shop I let her have her iPad and she was finally appeased (appeased. Not happy. Ugh).
I had suppressed my feelings with all of my might, seeing those other children and comparing it to how my child was crying the whole way around. I tried to suppress the children sitting around us eating food orally, watching people walk by, finding inanimate objects fun to play with.
All was well. I had managed to drink my coffee and eat my soup. Success. Until I took the brakes off the wheelchair and pushed it and the iPad cascaded in slow motion onto the concrete floor beneath it. This is our third iPad. Why oh why did we not get a screen protector? The last iPad enjoyed a trip down a dual carriageway on the roof of the car and was never found. We don’t have much luck with these things.
A culmination of feeding pump issues, Amy’s constant crying, and then the icing on the cake – the iPad breaking.. This is what set me off. The panic attack lasted about ten minutes and afterwards I cried hysterically until I could barely move.
Since then my anxiety medication has increased and I have started CBT.
I try to be mindful, I try meditation, I try to exercise (the overeating is still in full force but I am working on it!).
I feel that therapy isn’t the option for some of us. I feel like surgery, housing issues, leaving work to be a carer, feeding issues, constant appointments, paperwork, chasing appointments, failing at being a good friend and watching relationships dwindle is taking a huge toll on me.
I recognise a lot of the same things happening with my fellow special needs parent friends.
There is always something happening. You don’t get much time to dwell because you are so busy doing the next thing. Prepping meds, distracting your child into thinking the standing frame is great, ordering tube feed supplies, rearranging appointments etc.
Amy has recently mastered getting on and off her tummy whilst rolling. Something I didn’t know we would ever see. I also appreciate simple things like a quiet walk with the dog on respite day… something I could easily have taken for granted a while ago. I try and remain in the moment… admire the flowers, smile at strangers, meet lots of other nice dogs etc.
I have met some truly incredible people on this journey, and I have also kept quite a few of my best friends I’ve known since school or college. Recently I had a friend round for drinks one evening and we belly laughed in a way that I haven’t in such a long time. Sometimes my life confuses people not on this path or makes them feel awkward, but I’m learning to adapt and so are they. We all benefit from this.
I genuinely used to think panic attacks were a bit made up for attention. NOT true. I feel terrible that I ever thought that. Anxiety, chronic stress and panic attacks are a very real thing. I now feel so much more solidarity with fellow sufferers and hope that one day when I am stronger I will find a job to help others get better. I guess it’s a bit like when people think autism is just “bad behaviour”… these people have no idea because it isn’t part of their life and they don’t understand it. You can never assume anything, and you can never judge someone as you can never fully know or understand their situation. I know what has made me how I am and I am very open about it. Trying to change is hard.
I know so many parents whose children are regular admissions into hospital. I know parents who have lived in hospital for weeks, months and sometimes even years. You just don’t know what others are facing. When you walk past me alone in the street you may just think I am some girl on her way to meet friends or something. Actually I am the special needs mum hurrying to the shops to buy guinea pig food and enjoying getting out of the house for a few minutes. I have a new understanding of carers and their role and the pressures they face. I met a lady today who cares for her husband who has Alzheimer’s. She does an amazing job, she had a lovely smile and so did he. Smile in the face of adversity. Life can be amazing. Seeing them like that made me happy. I know that they face a lot of challenges, behind closed doors there may be a lot of tears but I could see her love for him a mile off and that’s beautiful.
Can I end this piece with a little advice?
For me personally, someone bringing me a pint of milk when I am struggling to get the shops… this means the world and actually makes life so much easier. For me a trip to the shops is a panic knowing Amy hates going out, I’m assembling the wheelchair, transferring the feeding pump and whatever else for the sake of a simple transaction.
Today for example has heightened my stress levels intensely.
I was in the car driving Amy to respite. She was screaming, the feeding pump alarm was going off, the dog was crying, and I was stuck in terrible traffic. I was doing breathing exercises trying to calm myself down. I then notice my phone had been ringing non stop/ it was Amy’s’ OT saying they had measured her for the wrong seat in seating clinic and that we would have to attend again.
I begrudgingly arranged another appointment and as I got out of the car and I dropped my phone. It smashed to bits. I am almost calm now, almost.
I am trying hard at the moment to be there for my friends when their kids are in hospital… take them for brews, have a rant together, have a laugh etc.
Amy’s respite hours are soon to increase and she is also due to start nursery. I am hoping that for me this will be a turning point. I will have more time to get things done and also time for me which will then mean I have a lot more energy for Amy.
She’s pretty full on 100% of the time but if you sing the right song or get out the right toy… that smile makes life the best thing ever.
Thank you for reading, I wish you plenty of sleep, coffee and lovely relationships. I am now going to try and have a little nap before collecting Amy from respite. Peace out my friends.
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