I did it again. I got complacent.
You know when things go well for a while and you start to feel like you can plan things and commit to events?
Well that was the mistake I made. Usually this time of year is when I am at my most tentative.
I don’t want to get too invested or too excited as at any moment the metaphorical rug can be pulled from beneath my feet and leave me face down, bruised and disoriented.
Amy was poorly for a week recently. It was the return of c-diff. It was literally a very poopy time for us all.
She recovered, she returned to school, and would you believe… I even for the first time in almost 5 years got a job! Only 4 hours a week, albeit a job nonetheless.
Things were going well. Sure, a lot of Amy’s friends were suffering colds and various infections, but I hoped that soon we would all be fine and start to do festive things together.
When things go well for a while, you almost forget how tough it can be and also how suddenly it can strike again.
You don’t want to live in fear, and it isn’t feasible to live in fight or flight mode all of the time… so complacency is natural, even in our unpredictable world.
We planned a trip to a local event called Lightopia. It was to be an action packed day.
A family breakfast outing in the morning. A SEND Christmas party in the afternoon, and then the magical lightopia.
I was a little apprehensive as generally Amy goes to bed very early these days.
However I thought the magical lights might captivate her imagination and provide her some much needed sensory stimulation, a new family experience, and some new memories banked up to treasure forever.
Right from the start of the day things weren’t quite right. I couldn’t quite put my finger on it but she was definitely a bit moodier than usual.
She was hard to settle even with songs or videos. We were having to work hard at distracting her from whatever was bothering her and keep taking her outside for walks.
We got to the SEND party and she was overstimulated and overwhelmed. She seemed to check out mentally. I couldn’t tell if it was seizures or a sensory issue.
Her cheeks reddened, her tone dropped, and she seemed very sleepy and unsociable. The show must go on we thought.
We hastened to lightopia… which by the way is a huge outdoor extravaganza of giant lanterns and lights.
It’s a real festival of colour and music all set up in a nicely wheelchair accessible park fairly local to us. We queued early and even got to be at the front of the priority queue.
It was so disappointing. I really wanted to look at her eyes with the displays reflected in them, staring in amazement and wondering what’s next.
Instead, she couldn’t really keep her head up, she was snotty and cold, and whining constantly. It’s not her fault at all, but I did having this ache in my heart that we had somehow failed again to do what other families were doing with such ease.
Everyone around us seemed so happy and excited. Kids running a long cheering, whooping and posing for pictures.
Don’t get me wrong. I still had a great time. I’m still glad we went. However, it became clear towards the end that Amy was coming down with something.
It is now 5 days since then and she has spiked constant high temperatures, increased seizure activity, increased work of breathing, hasn’t tolerated feeds for 5 days and the list goes on.
We are all absolutely exhausted and I’m pretty sure she is sick of me intervening with her. This morning after her shower I dressed her, she let out a sigh, and rolled away back to sleep with her back to me. My heart aches.
You know when you’ve had a bad cough for a few weeks and you’ve been really congested?
You start to forget how great it was to be able to breathe clearly, or to breathe without launching into a migraine inducing coughing fit.
It’s a bit like that when Amy’s unwell, I start to forget what more than an hours sleep feels like. I forget what it’s like to not have to constantly check obs and perform suction. It’s so draining for everyone involved.
I had so much planned in the run up to Christmas. My favourite thing about Christmas is the build up.
The markets, the children’s events, parties, the meeting Father Christmas and so on.
It seems somewhat ironic and unfair that winter is the time of year for everyone’s social calendar to be busting full of events.
It has made me decide that from Spring next year, I am going to pursue as many leisure activities as possible with Amy.
Whilst her health is good we really need to take advantage and go out and enjoy the world to her full potential.
I am imagining adapted wheelchair bike days, holidays in accessible apartments, days out with her friends, all of it. I want to make up for lost time.
Also this week, Amy’s best friend Mia is very poorly. We all love Mia very much, she’s like an extended family to us.
Usually this is the time of year where all of the special needs parents in our circle make a constituted effort to help out fellow families stuck in hospital.
We all know too well just how difficult it is. It can be soul destroying.
The days and nights are long, the stress is high, you miss out on so many things, you stare at walls, you stare at the door just to see who walks past.
Any visitor is welcome. Any small talk is welcome. Food deliveries are celebrated. It has been hard accepting that visiting our friends in hospital right now would be selfish and irresponsible as we risk bringing in germs from Amy’s current illness.
It all shows what an isolating time of year it can be for us.
I am so grateful that we have somehow avoided a hospital trip with this current illness, but equally this is a testament to the fact that we are working so hard on suction, nebulisers, positioning, pain relief and so on in the hope we can prevent this turning into pneumonia or a prolonged seizure.
I am frustrated that I got complacent. I am sad to have missed Amy’s Christmas play (again). I am sad that I didn’t manage a 100% attendance at my first month back at work.
I am sad about so many things. I am sad that our children have to suffer that little bit extra and work so much harder. I can’t wait to see her smile again. I can’t wait for her to breathe clearly again.
I am sure my Christmas cheer will come back. I am sure we will make some family memories soon.
I am sending much love to our friend Mia and her family… and indeed to all other families out there not getting to enjoy this festive time of year as they should be.