For any special needs parent, there are times we must make the decision to follow a course of action that is the lesser of two situations that are not ideal, but one has to be slightly better. We hang on to the hope that it has to be slightly better. It just has to be.

Abbey started a new medication 6 weeks ago as the big seizures were very strong leading to aspiration. Over this time we have seen a gradual increase in seizure number and length of a seizure. But the intensity of the big seizure is slightly less and a reduction in seizures that cause aspiration.

Abbey is tired from the increase in seizures. It is rare any one in the family gets a full nights sleep due to seizure activity.

Tonight we make the decision to come off the new medication. Our goal is always quality of life for our girl. We miss her giggles, her cuddles and her constant nattering.

We hope we are making the right decision. We will not know the consequences in a couple of weeks.

We watch. We wait. We cuddle.

My Boys

With the progression of Abbey’s medical needs, it’s harder to show the world to the boys. To expand their experience of this world. I’m grateful that we have been expanding our networks and communities to ensure we continue to move beyond our four walls of home. Today Daniel experienced his first Dawn Service for ANZAC day, then marched with his brothers in our local parade, all thanks to their Scout Troop.

Palliative – heavy shadows

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.