13 AugCelebrating Zach

Zach celebrates his sixth birthday this month and in true Butterfly style we are having extended celebrations! We are honoured that we get to celebrate another birthday by his side. His ayis and nurses are spending these days reflecting on their hopes and dreams for him. Although we know Zach’s life expectancy will most likely be reduced due to his underlying condition, we cherish every precious day we get to spend with him. It’s our privilege to make these days special. His long term prognosis might be heart-breaking, but day to day life with Zach is scattered with many sweet blessings. He has come so far since he first arrived to our home.

Taking life day by day for Zach…

Unlike some of the other children, Zach does not like the hot Summer weather. Zach prefers to be cooling off indoors, in the paddling pool or underneath the air conditioners. His ayis will bring him to the playground in the early mornings, but they bring him back inside as soon as the sun starts to come up. He sways in his chair when he is outside in the early mornings, as if he is dancing and claps his hands, capturing his excitement.

Zach is extremely fragile. He has good days and bad days. His nurses have symptom management plans in place to relieve his uncomfortable symptoms. Luckily in the last few months, Zach has been in good health and not caught any infections. For someone like Zach, chest infections can be fatal so his ayis feed him nutritious meals with added supplements to boost his immune system.

Zach enjoys being in the sensory room. His favourite activity is looking at himself in the wall mirrors. He looks curious at the face looking back at him. We would love to know what goes on in his mind, we can only guess by his giggles and smiles that it is only positive thoughts that he has.

Zach’s crib is called ‘Kindness’ and we could not think of a more appropriate crib name. Zach has a kind, calming nature and we are privileged to spend each day by his side.

We do not know what his future holds, but with children like Zach we do not need to look too far ahead.

We focus on the here, the now and making every moment matter.

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One comment

  1. Pauline Cartwright on: August 14, 2019 at 7:30 am

    Recently I was privileged to spend some time with Zach who I nicknamed Spiderman! With his arms and legs constantly moving it seemed like he was climbing buildings and achieving great feats. I hope that in his mind he was. He may not be long for this world but his life counts for so much, bringing grace and joy to all who meet him.

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