Written by Tori Rayle, House Parent in the Courage House
Jude is full of peace. Sometimes, it’s hard to see that peace because of how easy it is for him to feel pain. But, it is the times when we just sit, cuddle and enjoy each other’s presence that his peace flows over to me.
Jude is also a great listener. We’ve had many conversations. Sometimes I tell him how precious, handsome, and loved he is; sometimes about what is going on in the world around us and sometimes we sing. He’s such a handsome boy and sometimes I go visit him and get my Jude cuddles in when I need a moment to breathe.
Jude is particular about what he likes and dislikes. The weight of his head is too much for his tiny neck to support so he easily cries out in pain. But, when you take the time to get to know him, his likes and dislikes, you’ll figure out the perfect position to support his head and you’ll see that he really loves to be held. Many people who spend only moments with this sweet boy might say he hates to be held or even touched. But once you get to know him and pay attention to how he is feeling that day, you’ll learn that he usually doesn’t mind and craves it just like everyone else. I started with only briefly touching his feet, then resting my hand on his stomach or side, then to being able to stroke his arms or legs, but only when he is feeling comfortable. He does not appreciate his head being touched, taking baths, having his position changed, or singing “head, shoulders, knees, and toes”.
When Jude first came to COTP we knew he had hydrocephalus, which means water on the brain. In many Countries this means a fairly easy/routine operation called a shunt. But in Haiti, it is hard to be accepted for this surgery. Early on, a few COTP staff drove half way across the Country for little baby Jude to be seen by a visiting neurosurgeon and hopefully to receive a shunt, only to discover that our baby Jude most likely had hydranencephaly. This means he is likely missing most of his brain and that water has filled the rest of the space. Children with this condition typically have a life expectancy of only two years old and the risks of getting a shunt for him in Haiti would be greater than the benefits. Jude was brought back home to COTP and made comfortable; all while no one really knew how long we had with this precious soul.
In November, we celebrated his third birthday! His head keeps growing and his pain keeps getting stronger, but he is still so loved. I use to live right next door to Jude and I would stop by and visit him every night. If a day went by that I wasn’t able to stop by I would miss him. Now after I have moved to a different location on campus, there are many days that go by that I don’t see him. This means that the times we do have to spend together are all the more precious. I know Jude knows my voice because he often calms down when he hears me coming. He knows who I am and more easily feels calm in my arms than in others he may not know as well.
Jude was abandoned at the local hospital likely because of his large head and a scared family, but he is so worthy in our eyes. It has been such an honor and a privilege to get to know Jude these last three years. He’s been on palliative care for so long that we are all amazed he is still with us. He is valued. He has learned who his people are. He expresses his dislikes. He has taught me so much.
We don’t know when Jude’s last day will be, but until then he is such a special part of COTP.