Humming Bird Gala Night

It started as a reason to escape for a little while, but ended up being a beautiful readjustment to my reality.

Last night, Abbeys previous carer, Madi and I attended a Hummingbird House Garden Gala Event to raise funds for its continued existence. Every year they need $2million to continue operations. There are 3700 families who need their services, including our family, our Abbey.

If 3700 people donated $37 for 12 months, they are a significant way towards that goal.

It’s as easy as not having 2 take away coffees each week.

A few wines, pretty flower walls, great company and my first live auction made the night magical, and an escape.

The courageous sharing from a Mum and Dad who lost their son last year and what Hummingbird House provided to assist them through that process was too much. A quick dash to the back of the room to cry in ‘private’, but still able to listen to their story, was a slap back to my reality. That will be us one day. Will we be as brave to share our story, our loss, to assist other parents?

For all Hummingbird House give us in support, love, memories and time, we can only try to give back in whatever capacity we can to ensure other parents and siblings have access to this little slice of heaven. This is a very special enterprise.

Star Wars

What a hoot to see the new Star Wars film, Solo. Thanks to the generosity of those who give to Hummingbird House we were able to participate in a special event that there is no way we could have done without the support of family and this amazing place.

We stayed out late. We got to snuggle in the cinema.

How was the movie? FABULOUS. A missing link in the Star Wars story. The question on how Chewy and Solo met is answered. Finally!

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!

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!

Coming Home from Hummingbird House

Since coming home from Hummingbird House there is a small amount of fear. The fear of the unknown now becoming more known.

The situation cannot be compared to having your first child, but that fear of the unknown and finally having that child in your arms, puts you firmly on a journey going forward that you need to work out as each day passes.

Since the palliative word entered the vocabulary it was easy to slowly inject it into our day to day. To look at my girl in a slightly different light. To know we had started on this next journey, albeit walking around in circles it seems

Being at Hummingbird has finalised for me that this journey is coming to an end. I have always known this, but I had never thought of the process as having a beginning, then a path. It was always just an end. The crap of day to day, then an end.

As the seizures continue to evolve (very quickly in the last 3 weeks) and their consequences, as we reach out to services and people trained in this area, we are being eased onto the new path.

For the first time we are supported, besides just being loved and cared for. For the first time, I have access to a place if it all becomes too much. For the first time, Im not 100% reliant on James.

This is a wonderful place to start, however scary it is.

Palliative Care with Hummingbird House

Abbey has been accepted to Hummingbird House for palliative care assistance. Now, don’t get all down and blue reading that. It is actually a huge positive for her and us as a family. Not knowing how long we have with Abbey means we may have her for a long time yet, so getting acceptance to Hummingbird means we can move forward on some things we didn’t think possible only months ago. This is a time to celebrate, instead.

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.