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!