Out of our control

When I first took on the challenge to share a photo a day in my life of caring for Abbey, it was easier. We were in the place of fighting for her future. Education, medical rights and advocating for the needs of our family were priority. The day to day highs and lows were numerous and easy to share.

Strangely this has not changed, but the way in which I view what is important has. Previously I was concerned about making a change, trying to make it better for others through highlighting what makes it hard for us. Now it’s the emotional journeying knowing where this palliative journey will lead. We are more focused on building a resilience within ourselves and the family as a whole.

This means those situations that are out of our control or we cannot immediately influence have dropped in priority. Now we share our spare time together, doing what we love to do as a family or individually.

Today it’s enjoying Avengers: Age of Ultron in spurts around the caring of Abbey, medical discussion, housework and cooking again. It’s back to simple joys with our family. Nothing is more important. Nothing.

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.

How to help, when you cannot

It’s hard watching a friend or a family member travel the journey of caring for a child with specials needs, let alone a life-limiting condition.

We can feel helpless, and I know the feeling. I see many of my friends battling conditions they can’t solve for their child. They don’t know what to do next or what is even normal. Their childs’ condition and the impact upon their family is completely different to mine. But I know the feelings of overwhelm, frustration and sadness, mixed with the moments of extreme joy and relief.

If you feel like you can do nothing, but really want to assist. Can I suggest donating to a charity that will directly help your loved one?

For our family we put forward Hummingbird House, a place for children who have life-limiting conditions or palliative status can be cared for medically and safely. For the first time in 12 years, our family visited in February and we had special moments, as a family, while Abbey was safe. And for the first time, I have somewhere I can turn when it gets too hard.

Hummingbird House is funded primarily by donations, as are so many other disability community services. Sometimes there is nothing you can do, because we need the assistance of professionals. Can you help us to continue to access these services? Can you do your next fundraiser at work for the charity/organisation/community services that is dear to your loved ones heart?

If you are not sure, please ask us.

Love from Hummingbird House

One week after our trip to Hummingbird House, I can finally share why it has had such an impact on us. On arriving home, we were straight back into life including doctors, work and changing seizure patterns. Trying to mentally digest what we experienced at Hummingbird House has been challenging.

Today I feel like I can put some of the experience into words.

Imagine being told about place that is fully supportive of you and your families needs, and that your daughters medical requirements are considered normal. Imagine meeting the gorgeous nurses, Rosie and Andrea, in an initial meeting at your home, who were patient, caring and not at all worried about what we would be bringing to the Hummingbird House.

The kids and I had visited Hummingbird House before Christmas to see the reindeers and had a very short tour. I was overwhelmed then at the facilities and beauty of the place. Honestly I did not believe it could be as they were saying. As all special needs parents know there are more times advocating for than just purely being with our children.

We arrived and were greeted with a smile and queries how we were doing. We were over-exicited and overly cautious. If we let ourselves relax, sheesh, normally all hell breaks loose.

Hummingbird House is a place for children with conditions that are life limiting or require palliative care. Our darling girl fits both categories. Such places are usually depressing, sad and have that icky feeling. Hummingbird House is a home.

We started with a tour of the grounds and facilities. The boys could not contain their excitement … walking ahead, touching things and being a little rowdy. At the time it was quite annoying, but now I see they were so relaxed to enjoy themselves.

Abbey stays on the Care Floor (not the hospital wing). Its a beautiful space with a music therapy room, art tables and patient care rooms that look like hotel suites. Each guest (not patient) has their own bathroom suitable for hoisting and a wheelchair. What a relief that Abbey could be cared for, no matter what medical condition she may present, from floppy and uncooperative to fully engaged and walking with assistance.

We were blessed with being able to also stay on the premises in a suite below the Care Floor. I was expecting bunk beds and a communal bathroom. James and I nearly fell over when we were presented with a small apartment that had been designed for including the guest requiring disability assistance. If we wanted Abbey with us downstairs, we could. If one of us wanted to stay with Abbey upstairs, we could. If we wanted to let Abbey have her own camping trip while we spent time with the boys we could.

There is so much to share about our Hummingbird House experience, but here are the highlights:
– the food by Pauline. Home made dishes that delight the senses every lunch and dinner time.
– the boys loved the chickens.
– the playground for the boys.
– the joining staff for lunch and dinner with Abbey if we decided too.

Our family were not a strange entity at Hummingbird House. We were normal to the staff. That is where the emotional overwhelm started. To be accepted with no need of explanations.

However James and I are processing that the staff were surprised at our Abbey, in particular there is no seizure rescue medications, her intensity of seizure and her amazing abilities, but how these abilities can alternate significantly on an hourly basis.

We had the privilege of chatting to the nurses in charge of Abbey’s care and they shared or confirmed our thoughts. The thoughts that we are in a pretty crap situation. Yes, I have always know it … but to be put in a placed where we are considered normal and to be totally cared for … to then come back to reality, it hit me hard.

Hummingbird House also provides me a place to call on for assistance when it does become too hard. And its becoming harder as the weeks progress. After 12 years of very minimal assistance, now there is more. Wonderful.

Where to now?

Back to Hummingbird House as fast as we can!

Hummingbird House

Finally our stay arrived. The main intent of this stay was for the staff to get to know Abbey and her family. Long days sharing information but empowering as we led the show.

The boys were welcomed and encouraged to play.

We are still processing our stay. It has shifted our world due to matters discussed and where Abbey is at currently.

I promise to share more as I can verbalise the depth of feeling.

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.

Palliative.

Its a word that has always been in the background and followed us around from day one. Its a word that we wish not to hear.

Palliative.

The word popped up at a Paediatrician appointment last week for Abbey. Her doctors have started talking about the process.

Abbeys doctors’ want to start the paperwork for palliative care. Abbey is not terminal. It just does not make sense, but we know her life will be shorter. Her doctors know this. We know this.

We won’t look into the future often. We know it will change dramatically one day. I dont want to start the process.

But… we must.

For a week I’ve been going through another kind of grief. A sadness that this step makes it official that my girl won’t be with me forever. That I will outlive her. Paperwork always makes things official. I like thinking I can spend all my time curled up in bed with her cuddling.

Why palliative care?

Abbey is eligible for this service as her life is shorter and its provided for children who will not make it to adulthood.

Starting this process will help in the following ways:
– as Abbey gets older, there is less chance that we will loose services from the child to the adult sector at 16 years. Its just another foothold in the bureaucratic system that is disability services.
– if she does pass away at home, then it will mean the police will not need to be involved, making this event a bit easier on all concerned.
– we can hook into counselling and services that can assist us with this transition.

This has brought into perspective where we are heading next with our girl. It all makes sense, but honestly, if feels icky and makes me sad.

Talking about it does not help. Writing about it does not help. I dont think I want to get use to this next stage.

All we can do, is carry on. Life carries on. Abbey needs cuddles and love. This we can provide in abundance.

Palliative: the word we dont want to hear.

Palliative.

Its a word that has always been in the background and followed us around from day one. Its a word that we wish not to hear.

Palliative.

The word popped up at a Paediatrician appointment last week for Abbey. Her doctors have started talking about the process.

Abbeys doctors’ want to start the paperwork for palliative care. Abbey is not terminal. It just does not make sense, but we know her life will be shorter. Her doctors know this. We know this.

We won’t look into the future often. We know it will change dramatically one day. I dont want to start the process.

But… we must.

For a week I’ve been going through another kind of grief. A sadness that this step makes it official that my girl won’t be with me forever. That I will outlive her. Paperwork always makes things official. I like thinking I can spend all my time curled up in bed with her cuddling.

Why palliative care?

Abbey is eligible for this service as her life is shorter and its provided for children who will not make it to adulthood.

Starting this process will help in the following ways:
– as Abbey gets older, there is less chance that we will loose services from the child to the adult sector at 16 years. Its just another foothold in the bureaucratic system that is disability services.
– if she does pass away at home, then it will mean the police will not need to be involved, making this event a bit easier on all concerned.
– we can hook into counselling and services that can assist us with this transition.

This has brought into perspective where we are heading next with our girl. It all makes sense, but honestly, if feels icky and makes me sad.

Talking about it does not help. Writing about it does not help. I dont think I want to get use to this next stage.

All we can do, is carry on. Life carries on. Abbey needs cuddles and love. This we can provide in abundance.

Tennille

Palliative: Heavy shadow that are hard to express into words

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.

We all deserve peace

A special needs parents journey is never smooth. No matter the disease, illness or disability, it forever follows an unknown journey. We can only provide the love, support and advocacy for our child to make the journey for them that is peaceful and smooth. As a consequence we, the parents or carers, take on the burden, the sacrifice and the sadness that comes. And we do it because we know that life is beautiful and we want our child to experience that beauty.

Today was the one of the hardest day in our journey as Abbey’s parents. Today we had to advise our wishes for resuscitation for end of life.

It’s a horrible experience. We knew it was coming. It’s important to make it easier.

She is our daughter, she deserves peace at all stages of life. And we all – all who share in her life journey – deserve a peaceful end, whenever that may be.