16/08/2026
Here on this kitchen floor I’ve sobbed, hyperventilated, had panic attacks, felt angry and frustrated (never openly, or towards Elisabeth), stressed and often hated this part of our journey.
It’s VERY different to anything else we do because it’s so unsafe.
At its worst point, SMA Type 1 robbed Elisabeth of the ability to even swallow her own saliva, so the inner dread and trauma I have surrounding this topic is palpable.
However, after over a year of working painfully slowly on her ability to swallow food, I can now offer Elisabeth purées, yogurt and EVEN some melty puffs and she manages to enjoy the new tastes and textures (immensely actually).
This right here is proof of grit, consistency, determination and bravery. WE CAN DO HARD THINGS!
And….it only adds weight to the ethos and practice I’ve carried throughout my professional journey too. It’s mindset, action, effort and having faith in yourself to make the right decisions.
P.S Plus a tiny speck of miracle, thrown in for good measure. 😭💪🥹