I’m desperately trying to live in the moment – to dwell in the life currently unfolding in front of me, and not the fear of what‘s to come.
Theo’s breathing has recently become more laboured and we know that this could be a sign of what’s to come. The quantity of medication that is necessary for pain management of his limbs could eventually slow or stop his breathing. Theo also has some difficulty swallowing (an outcome of his current neurologic function) so he is at risk of aspiration pneumonia from his secretions. Right now, he is very susceptible to the average childhood cold – a common virus could have serious (even fatal) implications for him.
It’s days like these that I feel like I’m walking a tightrope of hope above a pit of adversity and praying for balance.
One day at a time.