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.

Im more than a nurse

The palliative journey is about coming to terms with so many things. This journey has a physical and tangible ending. It’s only started to sink in emotionally the past few days.

I know what the ending is, you all do too.

But ….

I’m Mum more now than Abbeys nurse or carer. My roles are changing up due to our new carer, Alison who is willing to take on morning and evening roles. Now I’m not solely caring her Abbey.

Now I can take a moment for an extra cuddle, kiss or chat with my girl. In having these beautiful moment, I’m starting to realise my role as Mum will end too.

Going out to parties

Last night we were invited to a friends birthday party. How exciting it was that we were available and everyone was well to attend. We had a fabulous night meeting new families, while taking a moment to stop.

Abbey partied for a short while but then fell into a very deep sleep with lots of seizure activity. Our hosts provided pillows and a warm doona for her. We stayed longer than we thought, so didn’t come too prepared.

Given her situation, James and I played the parenting game, Changing of the Guard. Abbey was showing all of the signs for a big seizure, so we could not leave her side. While one of us chased boys, refreshed drinks or food, the other stood/sat by her side. Then we changed, to give the other a break from watching and socialising.

All up it was 4 hours of socialising and parenting. Today we are exhausted. We are noticing our need to have more recovery time to be able to keep going. At times it’s shocking to the brain, where this is taking us. It’s unchartered for us, but we are learning to go with the flow.

Space woman

Sometimes being a little crazy is the only way to handle the world of CDKL5 with Abbey.

Dressing up as a space woman to promote a new print for my small business pulls me away from the counting of seizures, BMs and potential vomits. It puts the brain in a completely different situation and induces a great giggle.

Your welcome to watch my antics here Apikali-Cloth Nappy Doctor. Im also growing this biz for the special needs sector, and it feels wonderful. Abigail is a model and product tester often.

Show me your crazy!