It’s been 7 days since Brendan Bjorn got his new custom moulded wheelchair seating after having waited 9 months since his spinal fusion last October 2018. Waiting, in bed, housebound. We have been out a couple of days since he got his seating. The second day we were out, finally getting my haircut and doing a bit of shopping, he became fussy by the end of it. We had been out too long. Just 3 hours – the maximum time length he can be in his chair at this point in his life because he’s grown that fragile. 3 hours.

And while I am truly thankful to have this bit of freedom now, it is just a glimmer of freedom – and it’s a glimmer whose light can be quickly extinguished with one pressure sore opening up, again forcing him to be bedridden.

I’m not being negative. 
I’m being realistic.
It will happen again.

I was chatting on Twitter with a friend of mine yesterday. He said something that has stuck with me. We were actually chatting about the upcoming hurling matches and I sent a couple photos of the boys in Cork gear from the time when we lived down there. It was 10 years ago and Brendan Bjorn was a different boy altogether. The conversation went from hurling with this one short message to me: “I can see the journey you’re on. It’s not just BB as he is, it’s BB as he was.”

Yes. A thousand times, YES!

In that one message, it showed me that someone finally understood how, despite being happy to finally have limited freedom with Brendan Bjorn’s new seating, it is – and always will be – bittersweet because the boy he was is always present in my mind as I watch the boy his is now grow more fragile each year. 

That is something that most people can’t understand. Dare I say, it’s even something that many newer parents on this journey can’t (yet) understand as they are just starting out, still full of hopes that their child will reach milestones; still working with therapists weekly so their child can meet their full potential. And rightly so. They should be.

But you see, I’ve been there with Brendan Bjorn.

The physio twice a week. The OT/speech once a week. The stander daily. The walker – yes, a walker! The special needs bicycle. The AFOs and botox and serial castings. Watching him be able to grab things out of my hand, bring a biscuit to his own mouth, hold his head up for a few minutes at a time. Seeing him accurately trigger BIGmack switches to relay messages. The travel and adventures taken. And so much more. 

But it’s all gone now. That time is past. The hope of milestones and met potential no longer exists. And for me, it hurts like hell to watch my child regress and decline each year despite having worked so hard and having had such faith that the work would make a difference and somehow save my beloved son from the challenging and very restricted life he is now leading.

As I washed his hair tonight, carefully and tenderly holding his head in my left hand as I rinsed with my right hand, it all came rushing at me. The feelings of what it used to be like when he’d lay in his special bathtub laughing, kicking his legs to make the water splash, and laughing with abandon. Yes, beautiful, precious memories I shall treasure as long as I live. But like my friend said about this journey, It’s not just BB as he is, it’s BB as he was.