Three weeks ago today, my son Brendan Bjorn had a long awaited spinal fusion. After waiting over 16 months on an *urgent* spinal fusion waitlist, growing worse each week as his body crushed in upon itself, he underwent the major surgery in attempts to get things straight – his back, his lungs, his intestines, his body as a whole.
Three weeks later, he is still in hospital after a number of complications. Some of the complications weren’t totally unexpected considering his medically complex condition. Having said that, no one really expected he’d still be in hospital at this stage with unresolved concerns and no discharge date in sight. Thankfully, his surgery site is healing well now after a bout of infection. His digestive system, however, isn’t cooperating with recovery. He’s on TPN (nutrition via IV) and has had severe diarrhea for these past 3 weeks since his operation. He won’t be going home until he’s back on his formula. It’s that simple.
I know life’s path isn’t always a straight one, but at this point, I could do with a few things getting straight. The sudden turns and unforeseen detours on this journey make for some very tiresome traveling.
I’ll know by the end of the week if the bungalow we intend to buy will actually come through or not. If it doesn’t come through, then it means the search and buying process will have to start all over. And to think that for Brendan to come home to me and his brother we need to be moved into a suitable bungalow required for his complex medical care has left my head anything but straight.
One of the hardest parts about this journey is living each day in the moment while also needing to plan ahead. Make that plan ahead with the addition of a Plan B and maybe even a Plan C also in mind. Parents with special angels like Brendan are required to remain ever vigilant when it comes to organising such complex needs. We desperately try to keep things straight because our child’s life often literally depends on our ability to do so. If you aren’t on this journey but know someone who is, be patient with them as they work to try to get things straight. It may mean they have to fight and advocate for their child’s unique needs. You may think they are complaining too much or focusing on what is wrong rather than what is going right. Please understand that to get things straight, and indeed to maybe even save their child’s life, they must focus on what needs to be improved to prevent the lack of improvement causing further harm to their child.
Our path is anything but straight forward.
As I look at the x-rays of my fragile son’s back, it seems surreal.
He waited so long.
I fought so hard.
Yet there it is, in black and white: the rods and the bolts holding his spine as straight as could be done.
Such a mixture of emotions comes over me tonight as I examine the pictures. Gratefulness, relief and hope. Fear, sadness and anger. Emotions not all of you will understand. Emotions some of you may even judge. Emotions that will resonate with a number of you…those of you who share this path that’s not so straight.