Nevaeh

My amazing granddaughter Nevaeh was the best gift I could ever ask for; she was such a little darling.

I knew she was dying and I wanted her to be at home, with me. Rainbows made that possibility a reality.

Nevaeh was born with a rare condition that causes brain malformations, and she started visiting Rainbows when she was three-months-old.

She absolutely adored being there. She loved sensory things, especially massages and she loved music therapy. Although she was deaf, Nevaeh would feel the vibrations. We used to play “You’re Welcome” from Moana on repeat as we both loved it so much. We played that song at her funeral.

Throughout her life, Nevaeh remained like a newborn, unable to do anything. Because of her intense care needs, Neveah lived with me, so she was able to have one on one care. Her siblings lived with their parents and everyone spent quality time together. Looking after Nevaeh took all of my time, and Rainbows gave me a break so I could rest and sleep and not have to think about doing everything.

But eventually it was too much for us to go to Rainbows. That’s when Rainbows came to us. Rainbows provides a Hospice at Home service and I honestly don’t know how I would have managed without their incredible team. They helped us through the most difficult time of our lives.

For six months, nurses came to see Nevaeh and they were amazing. They assessed her palliative care needs and symptoms to ensure Nevaeh was getting the best care possible and that she was as comfortable as could be. They knew her likes and dislikes. They were building up to taking her out but towards the end she just wasn’t well enough. When they came, I was able to go to bed and get some rest and it was reassuring to know they had my back and Nevaeh’s best interests at heart.

It was hard for me at first as I was very particular with Nevaeh, and I wanted to do everything for her. But I knew I couldn’t do everything as it was just too much. I knew when I needed that bit extra. I did like to think I could do it but there were times when she had me on my knees and I was in bits. At those times, I knew I could pick up the phone to Rainbows with any question and that was so comforting. I knew there was always someone there in the background.

Our beautiful Nevaeh was only six when she died. She died at home, which is what I wanted, what our family wanted and I believe, what she wanted.

I wanted to be able to keep her at home until after her funeral and that meant the world to me, just to have her in her own room. She had never been on her own in her life, and the thought of her being somewhere on her own with no one with her was absolutely terrifying.

Rainbows provided us with a Cool Blanket, which kept Nevaeh cool. Her room was so cold and I would have to put my coat on, but I was able to go and sit with her and that was something I was so thankful for. Her siblings were able to sit on her bed and they could still give her a kiss. The help we got after Nevaeh had died was fantastic for all our family and that wouldn’t have been possible without your donations.

Without Rainbows I know I would have managed because I would’ve had to, but I would have been at my wits end. Rainbows made everything easier for me and helped me be able to grieve. They came and checked on Nevaeh every day, those nurses went above and beyond and were such an amazing team. They even managed to get me to smile every now and then.

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