The addition of the word, palliative, to our day to day vocabulary has shifted our world. There are new feelings … I thought it was not possible to experience such depth or range of feeling associated with one word, especially at this stage of our journey with Abbey.
The feelings are a heavy shadow that are hard to express into words. There is no way to express these feelings that makes sense. I dont have the desire to cry, be angry, scream or cower.
The word has formally put a finality to this journey with Abbey. But there is no final date and no idea what comes next. All the word does, is tell us we are on the final path.
I have tried using it in day to day conversation to become use to it. I have tried writing about it, but for the past 2 weeks have been stumped as to what to write.
In writing this update there are overwhelming feelings of sadness and despair, but these are equally shared with feelings of vitality, stubbornness and abundant love for the life this girl deserves.
If anything, the word, has firmed my desire not to waste time on trivial stuff, irritations or situations. These are in abundance in day to day life, from someone not understanding your position and it causing angst, to the delivery truck being late or even tackling the NDIS process. None of this is within my control. Our next stage with Abbey, is out of my control.
Where to now? I fight harder for what we need, we want and would love to achieve. I focus on moments of connection and love and not hide. Hiding is so much easier though.
I hope that friends and family will understand if Im late in replying, not remembering the important days or getting caught up in the whirlwind that is Abbey and forgetting a coffee date. I hope they know that when they reach out or check in, that it pulls me out of the little sad hole that can sometimes begin.
Its getting harder to reach out to the world on this new path. It takes more energy and emotion. It also takes more time as we dont know what is next, so there is no preparation.
The word has also given me a new sense of patience with the world. Patience with myself, patience for others in hard situations and patience for those grieving for a loss.
Its written. I dont know how to end this. Nothing has changed in writing it, but its out there now. Maybe I can move onto the next thing? Whatever that is!
Photo: We have altered our evening schedule to all have dinner together as often as possible. Abbey tends to lay down when at the table, as its just the right height.