I haven’t been in the headspace to write this past week. That is never a good sign. In fact, it’s a sign that I am overwhelmed. Make that more overwhelmed than usual. It’s a sign that I am being weighed down by too many things, trying to dodge bullets being fired from all different directions, and I’m being grazed by a few of those bullets, if not hit altogether.
The result may be random ramblings linked only by the fact that this is our life.
Brendan Bjorn was admitted into hospital on three different occasions this past month. After tests and xrays and blood work and exams, it all boils down to the fact that the neurology of his digestive system isn’t doing what it should do.
There is no quick fix.
There is no miracle cure.
His peg feeds via pump are now spread out over a 20 hour period in the 24 hour day. The other 4 hours is when he gets the extra fluids his body needs in the form of Dioralyte. In those all important 24 hours, I need to now add 3 equally spaced out doses of Erythromycin which will hopefully help the motility of his gut. And, of course, there are his other twice daily medications for seizures and liver function.
I’m still trying to sort out a smooth, well-timed schedule. It hasn’t yet happened.
All the while, I have been doing all I can to locate a new rental house for us to call home. It’s not so easy from a hospital room, let me just add. We are now out of the hospital, but the search remains incredibly hard and seems impossible. The media has even picked up our story with an article having been published yesterday. I tweet, I email, I view homes pushing Brendan along in his wheelchair amongst the numerous other potential tenants.
I humble and/or humiliate myself by laying bare my desperation
…and I abhor having to do so.
But it is for them…those two beautiful boys that I am blessed to call my sons.
There are so many pans in the fire I’m sure something will get burnt. I’d say it will be my mind, and as a parent on this journey with a child who has a life-limiting illness, I am willing to do that if it’s what it will take to make life what he – what they both – deserve.
Brendan Bjorn also needs an urgent spinal fusion. I hear 15 months is the minimum wait on the dreaded scoliosis waitlist. This will not do. He doesn’t merely have scoliosis (a condition which as we all know is terrible on it’s own accord), but he also has severe cerebral palsy which has made his trunk completely devoid of any muscle tone.
He is literally crushing down in upon himself with gravity overpowering his fragile, helpless body.
His lower ribs are hitting the top of his pelvic bone.
His gut is being compacted and it is severely impacting its ability to function.
With each day he waits, my pain, my anger, my feeling of desperation, continues to grow.
My youngest son doesn’t understand, at just 9 years old, why we can’t find a long term house to make our home. He, too, is experiencing emotional fallout from the battles we are facing. What he is going through now will form him as an adult, and that fact weighs heavily on my mind. I cannot financially afford to give him the secure family home that every child deserves to grow up in filled with contentment and sense of grounding.
Every single day, I wrestle with the acknowledgment of my failure to be able to provide this for him, and for Brendan Bjorn, and it’s bringing me to my knees.