When is sound silent?

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If a tree falls in a forest and no one is around to hear it, does it still make a sound?
If a mother cries out loud and no one is around to hear it, does she still make a sound?

A few days ago I took my son Brendan Bjorn to an Orthopaedic consult appointment to review his worsening scoliosis and hip conditions. I stood there chatting with the consultant, and like the professional special needs mother that 12 years on this journey has evolved me to be, I asked all the relevant questions…

Spinal fusion surgery?
As a matter of urgency on a priority status?
Because his severe cerebral palsy has left his trunk with no muscle tone whatsoever?
Ok…ok…

Ok, is this a rod or fusing the spine or what? A rod, complete with screws, plates, et al.
Ok, will it be able to be lengthened? No, not at this age.
Ok, he doesn’t tolerate anesthesia well, how long is this surgery? It is very long, but you will be meeting with the anesthetist to discuss the procedure and voice your concerns.
Ok, how long will he have to wait for this urgently needed operation? I don’t know. There is a waitlist, but we want to get it done before his scoliosis fixes and becomes far more difficult to repair, and far more difficult on him.

Ok…I was ok, but now I’m not ok.

I was OK for a couple of days, but last night it hit me – this is a very risky operation, especially for a child as medically fragile as Brendan Bjorn. While on an intellectual level I completely understand that this operation will greatly improve his quality of health, and therefore the quality of his life, on an emotional level I am terrified in my understanding of possibly losing him during this procedure.

And I cried out loud.
No one heard me. 

At the end of the day, I will go forward with the spinal rod being surgically placed in his back. If I don’t, his spine will continue to crush down upon itself, in the process crushing down on his internal organs, including his lungs, and his lower ribs will continue pushing down on his pelvic bone. If I don’t, the pain and discomfort and related medical problems will only continue to increase. I couldn’t bear to think of that happening, just as I can’t bear to think of the worst happening as a result of anesthesia complications. It is a decision I haven’t made lightly, but now that I have, I hope the operation can be done very soon – before his spine fixes in the twisted, curved position it is in now and before it does more damage.

Tomorrow is another day. Tomorrow I take my son back to the hospital, this time for a urology appointment to discuss why his body has started to hold urine for 24 hours at a time and what can or can’t be done about the situation. At least it will take my mind off of everything else we face currently, even if for only that moment. Tomorrow evening, I will probably cry out loud again as these things that weigh on my heart and mind will come flooding back to me in the silence that surrounds me after my boys are asleep.

If a mother cries out loud and no one is around to hear it, does she still make a sound?

 

blog pic june 5

One thought on “When is sound silent?

  1. Well written. As a person with a disability myself it frustrates me that the State does not offer more support to people with disabilities and their families. If proper support was there it would enable the person with disability to become his own person with a unique identity instead of an object of care.

    Like

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