Til we meet again....

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. 

Another new face

Emmanuel is the new kid on the block, but we also have a new volunteer in the Home. Her name is Emily, and she has come from Australia with a wealth of nursing experience and compassion to share with our children. She has only been here two days, and already she is settling in and getting to know the children. It seems she has a gift for connecting with the kids - especially our more reserved butterflies. Even the very shy children are warming up to Emily. Here she is getting a cuddle with Ysmael.

Emily's special field at home is cardiology, so she has been well qualified to assess Emmanuel. She's been discussing his heart condition in detail with our two resident nurses, and explaining what is going on with his little body. Unfortunately he has not been gaining weight appropriately, and he's going to need a nastogastric tube so that he can be fattened up ready for surgery. We need his body as strong and healthy as possible, so that he can cope with such a big operation. 

Emmanuel looks pretty happy about his examination!

Emily is also keeping a close eye on that pesky ear.

Emily has already found the Home to be a "little haven" with lots of warmth and humour. She is doing a great job at acclimatizing to the new environment. She says that  language and communication are the most difficult challenges. We think she is coping just wonderfully - her great nursing skills and enthusiasm are definitely getting her message across.

While she is with us, Emily will be sharing her knowledge with our resident nurses, and doing some training in areas relevant to paediatric palliative care. Having a nurse come to support us with skills in these areas is such a gift!  Emmanuel certainly looks pleased to see her around!

Funny boy

Ysmael has quite a sense of humour when he is feeling well. He is being very comical here, sitting with his mouth wide open. He was very aware that everyone was laughing, and still he kept his mouth open, prolonging the joke. He sat that way for ages, making sure everyone had a good giggle.Then Paul came on over to join in the fun. He poked his finger right into Ysmael's mouth. Our little comedy duo had everyone in stitches!

It's so true that laughter is the best medicine!

Meet Ysmael.

Ysmael hasn't made many appearances on this blog yet. That's because he is one of our quieter kids, and he needs to spend a lot of time resting due to his serious health issues. Sometimes he has good days, when he joins in and is quite engaged with the activities going on. He likes music time, and if a DVD  catches his eye, it might keep him engaged for a little while. Other days he can be very tired and he needs a lot of sleep. On those days, he rarely eats any solid food, but his ayi makes sure he takes a bottle of milk as he rests.

He turned one a few months ago - so he's just a bit older that our two recent birthday boys. But he's not a typical one year old who is growing like a mushroom. In fact, it's a long time since Ysmael has grown at all. He weighs the same as an average 4.5 month old, and has stayed at that weight for many months now.
 Ysmale has advanced liver failure. His skin is jaundiced, and his enlarged abdomen looks startling, while his arms and legs are like fragile sticks. On his stomach is a small surgical incision - it hints at the roller coaster of hope and despair that his first parents must have endured. It looks like he had surgery - an attempt to repair his condition - but the surgery was unsuccessful. It's impossible to imagine how his first parents must have suffered as they realized that their beautiful son would not live a long life. We don't know how long they agonized over their decision, but finally, they left their boy and he became an orphan.
 Now Ysmael is one of ours. We know there is no cure for this little guy on this earth, but we are committed to loving him and serving him for as long as he is here. One of his hardships has been intense itching of his skin, caused by the jaundice. Lyn has recently started  him on a new medication, and is hoping it will make him more comfortable. He's not mobile, but he likes to be carried outside when the weather is fine. And while he might not join in when the children play, he seems to enjoy being held where he can watch them.

Here is Ysmael at Paul and William's party. He tried a little cake, and really enjoyed sitting with Nai Nai Lyn and watching the fun . (Why yes - he is wearing pink! And looking very handsome.)

Kids like Ysmael are an incredibly important part of our work here. This brave little boy will never be adopted and leave us for a new home with a Mom and a Dad. We will never get emails about his first day at school, or learning to ride a bike. This will be his home for as long as he lives, and sadly, we know that our time together will be way too short. But knowing this only increases our resolve to pour love into every day and  to make sure he is never alone. Ysmael's life will be cherished, and he will not cry out into emptiness. We will be there to hear him and respond - for every single day that he has.

Hannah's Birthday

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Happy Birthday Hannah

 
Hannah - the birthday girl!

The amazing beetle cake.

Thomas

 
Ysmael

Jesse

Patience

 

 

 

 

 

Jonathon