Additional Needs

A Place of Relative Calm

Posted by Ceri-Ann Brown on 26th November 2018 Additional Needs, Advice & Support

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I am writing today from a rare place of relative calm. I am sat at the computer, with candles on, lamp on, fire light on... and most importantly the web cam so I can see that she is safe and happy in bed fast asleep.

The whir of the dryer echoes throughout the house.... I like that a chore is being done without my presence. The dog is scuttling about knowing that daddy is due home soon…and the guinea pigs happily chomping on their kale.

Right now, everyone is happy.

This is what it's all about. I can breathe a sigh of relief. Phil will be home any moment... and instead of complaining about my many woes, I can just relax and say "we got through it, and it was good".

This last few weeks has been too chaotic to put into words. Basically, just day to day health issues with Amy. I don't know if it's some sort of sleep deprived form of delirium, or just that my new medication is doing its job. But considering the circumstances and physical demands of current daily life... I am doing very well.

As I am sure many of you will relate, a cold is very often not "just" a cold with our children.

Amy's cough is weak and ineffective and clearing the mucous (sorry if you're easily grossed out this is not the paragraph for you! I am desensitised by way of exposure!!) is very difficult. More often than not, it finds its way onto her chest and results in a chest infection.

For the last week Phil and I have been up constantly through the night suctioning her as her sats dip into the low 80s (blood oxygen levels, which are meant to be above 92). Eventually after a lot of wrestling and intervention we clear the blockage and her sats go back up.

It has been emotionally and physically exhausting.

She has been too poorly for school and her antibiotics have meant her not tolerating feeds. We are on day 2 of rehydration granules on 24-hour pump feeds and her stomach is showing no signs of giving up on its mission to ruin the washing machine!

It has taken a toll on me definitely... but today, probably through exhaustion... I have managed to accept it for what it is. I am grateful that this time we have avoided the trip to hospital, the IVs, the impossible cannulations, the oxygen and so on.

I've even put forward a case to have nebs at home to help loosen the "goo". Instead of feeling sorry for myself like I have in the past I've somehow managed to plough through it all.

Amy has been an absolute star

I always say there is "angry ill" and "happy ill" with Amy. She has been "happy ill" meaning she is quite happy to pop to the shops for supplies, she is happy to sit and watch videos whilst I catch up with the washing and prepare meds.

I have found myself inspired by her resilience and co-operation. Clearly her stomach must feel terrible, and that rattle on her upper airway must be a real nuisance.

The lack of feeds and slight dehydration has meant overly cold extremities... she giggles and smiles as I rub her hands and feet to make them warm.

She laughs as I re-dress her for the 5th time and tickle her tummy.

Usually I would feel an eagerness for her to return to school just so I can get on top of jobs and do some errands... but it has been so nice to spend some quality time with her and have some pyjama days recuperating and shunning whichever responsibilities can wait.

Her positivity and joy have spread to me and I feel privileged to have sneaked some of our best ever cuddles. As you can see from the photo... she is the human blur and cuddles can often involve facial injuries and all sorts!

I feel guilty for needing that time away, but I am sure it helps make us less dependent on each other, and she really loves school too.

Dependent as she is on me for all of her care needs - when she isn't there a huge part of me is missing and every moment that passes, she crosses my mind in a big way.

Right now, her face is so pale, her skin mottled, and the darkest of circles around her eyes.

And yet that smile can still light up a room and make strangers grin from her infectious expressions. Tonight, she rolled off to sleep laughing to herself with joy.

A laugh that to me means "We can do this." and "you're doing the best you can mummy, and I am grateful". I am beaming with pride at her acceptance of the many challenges she has thrown her way and her strength to recover each time.

Phil and I had gone away for two nights whilst she was in respite.

I was tentative about it as I knew she wasn't 100% before we left. I woke up the second day to a missed call at 02:30am. Immediately racked with panic and guilt (guilt I had slept through the call) I called them to find that she had encountered another unstable night.

We went left the hotel immediately and rushed home. I am glad now that we stayed so local... people laughed when I said our "holiday" was in Manchester, but this proves exactly why!

The return to reality felt like a cold, hard slap to the face... the out of hours doctors, the Sunday scramble to the pharmacy, the influx of stained clothing and bedding and so on. That first night home I felt grief stricken by it all, but I find I am in a place now where I am just so glad, she is getting better.

Her health this year has been so erratic.

She managed to go 4 years seizure free... and this year she got an epilepsy diagnosis. On top of this she has become ill more frequently than usual - I attribute this to her starting school full time and therefore being exposed to more bugs.

I think the sooner I learn to accept that actually her starting school may not mean I can look for a job... and that I need to be on call for any emergencies, the better.

I have never been one to enjoy surprises, I like a plan and I like to know what's happening.

So, all of this has been a huge learning curve for me. I wonder sometimes how everyone else deals with these issues. I wonder if sometimes I dwell too much, or that maybe I should have more energy reserves than I have.

I wonder if it will get easier one day or if this is just how it will be. I wonder if one day a medicine will be invented that dissolves all mucous and renders us totally clear and able to breathe.

I spend a lot of time awake at night listening for her scary night sounds (coughing, spluttering, rattling), trying to distinguish between her needing help... and our loud snoring dog!