Own the moment

One of Abbey’s greatest gift to me is learning to own the moment.

This photo was taken recently at school by her teacher. It is one in a series of 3 photos that were presented to me by her teachers as a Mothers Day Gift. Upon seeing them, I felt terribly sick, then heartfelt sadness, then overwhelming joy. From a flitting moment of what life could have been, to what life is, to ‘OMG she is just gorgeous and she is MINE’, all in a second.

Abbey lives in the moment, but more than that she owns it. If she is happy, she lets everyone know, and calls out for people to come join her. If she is sad or upset, she lets us know that she needs help or comfort. If she is tired she sleeps. She never is passive in a moment; she owns it and invites others to join her (or tells us to nick off in none-too-subtle terms so she can be alone).

This gorgeous photo shows a moment in which the seizures were not present, she was loving standing up against a wall and she was with her favourite people. She wasn’t just present, she was taking control and milking it for all that she can for her entertainment.

And that is where we, as a family, are at. Owning our moments and choosing joy wherever we can.

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.

Decisions

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.

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.

Heart is very heavy

It has been days of meetings regarding seizure management plans and palliative care. It never feels great to share on these days as the heart is very heavy.

The heart is still heavy, but we have a priority on making it lighter. Working towards a new normal and minimising the influence of the outside world until we can join it again.

Even Abbey is a little over it, stopping half way down the hallway to rest while walking.

Right now I’m forced to stop and relax. near Flinders Street Station in Melbourne on a green patch outside the church, where I keep attracting the alcoholics to share my green space.

A Last Step

There are many last steps on the palliative care journey. Today we finalised the resuscitation plan. Our end of life wishes for Abbey are now formal. This paperwork will be distributed around the key people, places and departments. We are hoping this is a smooth process moving forward.

And yes, it’s a heavy emotional burden. It takes time to process and feel comfortable with.

Today there were many chats and changes regarding Abbey’s medical needs. New medications for pain relief, stomach investigations and seizure management. We will continue on with the Marijuana oil trials as it’s still more positive and her quality of life is higher.

Life continues on. We continue to strive for our family motto of fun, dignity and compassion.

Finally needed the palliative care line

Finally rang the phone number for the palliative care team at the hospital to know if I’m doing the right thing by Abbey. Her airways are becoming restricted while having a seizure, a new development for her. As my gut advised, but my mummy heart did not believe, the palliative care team confirmed that there is nothing we can do with this new development. We watch and keep her safe.

Strange to say, that is comforting. It’s bloody awful, but I know there is nothing more I can do for for seizure control/reduction. I can now only prepare for the worst. It’s making all decision making very clear.

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!

Nightmares

Nightmares …. you would think they would be about loosing Abbey. Of course I have had those, but my nightmares or those dreams that are most unsettling is for events that are so far removed from my normal.

The most common one is Abbey walking into my bedroom in the morning and saying, “Good morning, mummy.”

The other is being presented with time that involves nothing to do and I can choose. This one loomed large last night, mainly due to our Hummingbird House visit. There is nothing I need to do there. There is plenty to fill my time, family time and boys time. But I will have the opportunity to be Mum. Just Mum.

I’m extremely excited about what adventures I can have with these 3 boys, while Abbey is loved and cared for.

But my brain can not fathom this new kind of normal. And it will happen on a regular basis, not a one off every few years. Not long to put it to the test though!