It’s often a strange, even backwards, journey with an earth angel who has a life-limiting condition. This current chapter of Brendan’s journey has been one of those: When Nothing Means Something. You know what I’m talking about, right? When your fragile child undergoes a myriad of tests and everything comes back “normal” and with each result you curse either in your mind or out loud…”Crap! (or feel free to go more colourful. I do!) I don’t want it to be normal!” Now, I know all the parents who aren’t on this journey and are reading this are probably thinking I’ve clearly gone totally mad after 10 days in hospital with Brendan. But I also know that my fellow SN journey walkers are saying, “Oh yes! I get ya!” **Side note: SN stands for special needs. We use all sorts of acronyms to shorten our busy worlds, so bare with us.
There lies your child, your earth angel, in the hospital bed with the same medical challenge that ended him up in the A & E many days ago. You think, ok, this test will show the problem and then we treat it and ok Bob’s your uncle and home we go. Nope. Not so easy. Test number two. Bob again is not your uncle and nowhere in sight. Test three and the doctor comes in and tells you to sit down on the bed for a chat. Bob clearly is out of the country on holiday at this point and maybe not even related to you, so forget about him altogether. “We can’t see any reason for why what is happening is actually happening.” Right. Ok. (Insert an expletive or two). And the doctor continues…”So, here’s what we will try.” TRY. The familiar ol’ TRY of this journey. Chair not suitable for your child with SN issues, TRY this. Formula not working for your child, TRY this one. Seizures still increasing, TRY this medication increase or let’s just add a new one to the other three. TRY. It’s what we do. Sometimes, it’s all we CAN do.
So here it is, giving it a TRY. Fingers crossed, prayers said, candles lit, positive vibes being delivered, wood touched and…deep breath. Will the new plan we are trying even work? The waiting game begins. Because sometimes When Nothing Means Something, it can mean Everything. It can even mean the beginning of that earth angel’s transition, be it months or years ahead. We simply don’t know. We don’t know. So, we TRY. We BREATHE. And we HOLD ON.