There are some days which are just hard, and the last few days at Butterfly Home have certainly been hard. On Thursday night, we said goodbye to our handsome Ysmael.
This little boy has been with us since he was just two months old. He came to us in pain and severely jaundiced, with an enlarged liver and spleen. He had already faced a surgery somewhere....a surgery which must have been planned with hope, but ultimately did not work. We don't know how, or why, or what exactly happened, but we can imagine the despair his parents must have felt. They must surely longed for their son to be returned to them healthy and whole after his operation, but instead they learnt that nothing had changed. Their little boy was seriously ill, and would not live long.
We know Ysmael was loved - his parents had tried everything to make him healthy. But faced with a terminal diagnosis, they had few choices. We don't know the details of their story, but clearly they felt there was nothing more they could do. Ysmael was abandoned, and became an orphan.
We were so privileged to be able to care for him, to become his family. He was an intelligent boy who was motivated to learn. He had mastered counting on his hand, and was babbling and interested in communicating. He loved his ayis very much. If a stranger came into the Home, he was wary until he got to know them. At times he was unwell, but he was always very stoic on his bad days. His cot was called "Grace" - and he certainly showed grace as he lived with his illness.
Ysmael had been a bit miserable for a few days, but on Thursday, he had a lovely time. He was in his walker - a Christmas present which has brought him lots of joy - and he was moving around, "dancing" to some music, and enjoying his bottle of milk. We are so thankful that his last evening was happy, and that he was enjoying the company of those who loved him. However, on Thursday evening he suffered a large haemhorrage and he died peacefully in his ayi's arms.
It's hard to accept the loss of these very precious children. Yes - this is a palliative care Home, and yes - we know that many of our children have a terminal diagnosis. But we don't look at them day to day and see "dying" children. We see life and joy. We see children just being children - learning, growing, laughing, sleeping. We delight in their achievements and love without reservation. So it doesn't matter how much we prepare ourselves, it is always too soon to say goodbye to these dear little ones. There have been broken hearts in our Home these past few days.
But ultimately, there is peace too - peace in knowing that Ysmael was loved, and that he had a Home here. There is peace in knowing that he is no longer battling illness, that his spirit is free now. There is peace in knowing that he was here for a reason, and that his little life mattered. He was only here for 18 months, but he was unique and adored.
We are thankful for Ysmael's life, and for all the things were were special about this one-and-only little boy. We loved him, and we will not forget him. Please keep Ysmael's ayis especially in your thoughts - they are missing him very much.