Yesterday, I finally dragged myself and Declan into the GP. We both have lung infections (a nondescript term for what I think, based on past experience, an xray would show is early pneumonia or pleurisy in me). Call it what you will, I am literally sick and tired. Coughing non-stop which is accompanied by a pain in my right lung. Four different medications on board and to say they make me dizzy is an understatement. But, I know that in a few days time I shall be on the mend and feeling better. In the grand scope of things, this is minor.

What isn’t minor is a delay in Brendan Bjorn’s spinal fusion.

Yesterday, not only did I go to the GP, but I received a phone call letting me know that Brendan’s URGENT SPINAL FUSION has been delayed. The delay is due to 1. Emergency cases taking precedence and 2. The consultant’s annual leave in August. What can I say, honestly? I can’t argue with emergencies and I can’t argue a surgeon having his annual leave. Right? Right. So, I won’t. Consider my tongue being bit. (It’s rare enough, so enjoy it while you can)

But I will say this: Having to watch my son’s scoliosis quickly progress over the past 13 months since he was deemed to need an urgent spinal fusion, is desperately heartbreaking. 

It is all I can do now to keep the ever increasing fold between his right lower rib cage and the top of his pelvic bone from creating a skin breakdown. The crease grows more red each week. Oh yes, I’ve been on this journey of creative parental medical interventions for 14 years now (my fellow SN parents will understand this all too well), so I can manage for another couple of months. But, should I have to? Should Brendan have to wait so long with such delays? I think the answer is no. 

Having said that, I will focus on the positive for now:

1. My boys and I can look forward to August now hopefully being spent moving into a suitable, forever bungalow and preparing it in advance of Brendan’s surgery rather than during his surgery.
2. The amazing generosity of the anonymous angel who is loaning me half the cost of the bungalow considering I cannot qualify for a bank or credit union loan as a technically unemployed full time family carer relegated to social welfare. As I said in an earlier blog, it’s the stuff of fairytales.
3. The compassion of the people who have donated and continue to donate to the #BungalowForBrendan fund trying to raise the remaining balance on the bungalow that the private loan won’t cover. My heartfelt thank you can never do justice to the emotion and gratitude behind my words.
4. Brendan’s health. Despite the scoliosis, despite the increase in seizures with this awful heat, he is indeed well. He is fit for his spinal fusion. He is happy, healthy and continues to light up our lives with his smile, laughter and unconditional love.

The plan for our week? Get over the lung infection. Finish the fundraiser. Wrap up the purchase of the bungalow. And then the truly hard work begins – scheduling the move and all that means…transfer of doctors; transfer of pharmacy; transfer of disability services; transfer of 2 different schools; coordinating appointments with new OTs, Physios, and the likes; scheduling the move, including the move of his medical bed by a different company; obtaining an overhead gantry hoist system ASAP for Brendan; and so much more. 

But, we will do it. We have to. And we will give it all we’ve got.