One of the things I’m not ashamed to admit is how intimidated I am by all the medical, non-typical equipment that makes up a fragment of your survival kit as part of caring for a child with complex needs.
Jaxon is only one so we don’t have half as much equipment as some of my friends children who are living a similar life to us.
In fact I can actually count on one hand how much equipment we have that is different to his typically developing peers.
Our first piece of equipment was a feeding pump. Something I’d never even seen before, never mind expected to need one day to keep my child alive. After hours and hours of gravity feeding though, I wouldn’t be without it now.
But it took a while to accept that this would form part of our new normal.
It’s relatively user friendly, quite small and compact so we can use it on the go.
People occasionally stare wondering why I have a long wire trailing from Jaxon’s pram but the stares are the least of my worries.
It’s when the pump malfunctions that I go into a meltdown. Either the feed is too thick that it’s clogged the tube or there’s a kink in the line somewhere that’s stopping it going through.
Many a time I’ve shouted, screamed and swore at this inanimate object that in fact, makes my life a whole lot easier.
The second piece of equipment we were given was a suction machine. I’d seen them in hospital hooked up to the walls but there was no chance you’d ever catch me popping a catheter up Jaxon’s nose to clear whatever was hiding away in there causing his sats to drop.
Or so I thought.
Now, I’m almost a suctioning pro. I can use our machine to clear his snotty nose, his sicky mouth or if he’s having a bad day with his secretions, it makes my life a great deal easier.
His secretions have been much worse of late due to the fact that he is teething but the suction machine means I don’t have to worry about him becoming distressed.
It takes me a couple of seconds to clear his mouth and he’s comfortable again. Going into hospital is the same, I don’t have to buzz the nurses in to clear his secretions. I just connect a catheter, suction away and we’re sorted.
I’m not a fan of emptying ours though. Yuk.
It’s not what I imagined, but it makes Jaxon more comfortable and his comfort matters more than how I feel about using all these gadgets.
Our third piece of equipment is a Leckey Squiggles Early Activity System. It’s similar to the Playpak.
It helps with Jaxon’s posture and positioning. It enables me to comfortably place him in different positions that will aid his growth and development whilst giving him the support that he requires due to the low tone in his trunk.
When our physiotherapist first brought it to us I wondered how I’d ever get my head around it.
Now though, I can safely put him on the floor knowing he will be entirely comfortable and safe.
The latest piece of equipment that we are being provided with is a P Pod. I’d always imagined my baby sitting next to me on the sofa watching TV or in a high chair.
It was a difficult conversation and initially I struggled to accept that he’d need a big bulky chair just to be comfortable.
We went to meet with a seating representative last week and I nervously passed Jaxon to our physiotherapist whilst she placed him in to the demo chair to see how he would tolerate it.
I struggled to hold back the emotion. Not because I felt sad. Quite the opposite.
For the first time I saw Jaxon sitting completely comfortably, more than ever before.
He melted into the seat and brought his arms up beside him, as if he were a king upon his throne.
I knew then that it was time to accept that this might not be what I imagined, but this is what he needs.
He needs this chair to be comfortable and that’s okay so I had to embrace it.
Seeing Jaxon sat so nicely filled me with pure happiness, I excitedly asked how long it would take before we would receive it.
We will receive the P Pod in a few weeks time and I’ve never felt such excitement about receiving a piece of equipment that I never thought Jaxon would need.
I’ll be like a kid at Christmas on the day it is delivered, I just know it.
I know in future we will need more equipment that his typically developing peers won’t need.
If I can learn to embrace rather than fear it though, I know we’ll be okay.