Being a parent is hard. Really really hard. It is an absolute privilege but let's be honest here; it’s hard.
I have no experience of raising a neurotypical or able-bodied child. My experience of parenthood shares some parallels, but also it is vastly different.
Many of the challenges parents of neurotypical children face will eventually be outgrown (hopefully). For us it isn’t just “the terrible twos” or “establishing a good sleep routine”.
There’s no calling a babysitter when we need a break, it isn’t that simple. Now I am not for one moment underestimating the challenges that all parents face; my point here is to highlight that a lot of the things you struggle with regarding babies or toddlers, will continue into childhood, teenagehood (if that's a word), and indeed, adulthood.
As the child gets bigger they can become stronger, louder, more dangerous to themselves and those around them.
Thankfully for us, Amy’s frustration/crying spells are significantly better than they were a few years ago, however today I am still reeling both emotionally and physically from last night’s bed time.
Amy is 8 now. She has severe quadriplegic cerebral palsy. Everyday she battles against the horrible side effects of several medications, manages extra pain to those around her, and has to make herself heard and understood without being mobile or able to speak.
I often wonder the level of isolation and frustration she may feel. Even resentment.
I am a very sensitive soul and deeply protective of Amy. I know it’s not realistic, but I want every moment of her life to be absolutely amazing, joyous and full of love. I have developed so much empathy, compassion and most importantly patience, for her “meltdowns”. (I am not sure if meltdown is the word now. Is it a crisis? Either way, a period of intense distress.)
Last night all of that went out of the window.
As with most children, they know how to push their parents’ buttons. I know I could be a little horror as a child and look back on my actions (especially as a teenager) with embarrassment and remorse. However when Amy has one of these episodes, she isn’t aware that she is pushing buttons. In that moment she is completely at the mercy of whatever her brain is putting her through.
As I was saying goodnight I could see an absolute rage wash over her. She was consumed by it.
She was hitting out, kicking, screaming, trying to rip out her hair.
All you can do at that moment is try to keep everyone safe and keep breathing. Remind yourself that this will pass. Remind yourself that this isn’t about you, it’s about her. She’s struggling right now and needs your support.
Eventually she was out of breath, breathing fast, retching, and had a very high heart rate.
My instincts told me to check her blood ketones and glucose as previously she has responded to ketoacidosis in a similar way, and if it was that - then it’s a medical emergency.
As I tried to calm her and check her bloods she swiped the finger pricker out of my hand and the needle gashed my hand. Blood was going everywhere. I scrambled for a tissue but didn’t want to risk her falling from her bed.
My second attempt - she kicked the lancet out of my hand meaning a loose needle was in her bed. As I attempted to locate the missing needle she kicked me in the face causing a fat lip.
When Amy’s moods are strong her movement disorder switches it up a gear and one unfocused moment will mean a nose bleed.
By this point I was feeling fearful, upset, and quite frankly annoyed.
I shouted at her to sleep. The anger intensified. I suppressed tears and told myself to calm down.
In the end I needed to administer chloral hydrate to sedate her. It’s a decision I don’t take lightly and I only use it in extreme situations.
For days after I feel upset and guilty about it and need constant reassurance that I had no choice and that to leave her that distressed is unfair.
This morning she woke up, perfectly happy, as if nothing had ever happened.
The relief is palpable. My beautiful happy girl is back. Morning meds kick in and she goes sleepy. I hope that smiles will return later.
I am still carrying the stress today. I can feel it all over my body. I wish I had been calmer and quieter. I never ever shout at her. It doesn’t help a stressful situation. But I know that often this is what happens to a parent when they are pushed.
I feel terrible now. Proper Mum guilt.
I worry if this will happen forever randomly. It only happens every now and then but when it does it knocks me for six.
I had some spare time so I managed to squash in a dog walk and a gym session. I didn’t want to do either but I needed those stress hormones to subside. I feel better now than I did earlier.
I am focusing now on staying distracted, staying positive, and working to be a better parent tonight. I told her I am sorry and told her how much I adore her. She just smiled and laughed and touched my shoulder.
I suppose the purpose of this blog is to say - it's okay to have a wobble.
It's okay to struggle. You're doing your absolute best and can't be perfect 100% of the time. Today is very much a new day and whichever Amy returns home from school today I am going to be absolutely delighted to see her.
If you are struggling with similar - please don't suffer alone.
If your mental health is being impacted make sure you get yourself to a doctor and see what support is available.
You can only be your best you when you are looking after yourself. I know that is easier said than done, but it's so important.