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 bear 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.
5 thoughts on “When Nothing Means Something”
All our love and prayers Tracy…hugs
beautiful writing Tracy xx
Hello there I obviously don’t know you and you I. I have a child with autism on the severe side and he is nearly sixteen. Boy have we had hard days and so many tears but you have put me to shame. I have always told myself and my other children we are so lucky that my son can walk and reasonably run and at least go to some places. There are no words I can say to you to make you feel better. Life is sooo cruel. I rem being told one is only given what you can cope with….well I needn’t tell you what I said to that. Your son Brendan has been blessed with you and your other son. You all are an inspiration to us all. Many are looking at your posts, they may not reply but they are looking…….
Deep breaths any prayers. Unfortunately patience in abundance is required daily but the fear of the unknown lunges on. Hugs and best wishes to Brendan Decland and you Tracey, Mother warrion x
Just reading through your blog again with line to you x