Jesse’s story is hard and complicated. It’s full of twists and turns. When you guess whats going to happen next, you are likely to find everything going in a completely different direction.
Jesse came to us as a baby. His initial referral was for end of life care. He had malignant tumours in his eyes.
We were thrilled to find that his eye lesions weren’t malignant after all. His eyes were severely scarred and lack of visual input during critical developmental periods meant that there was no hope of restoring sight. But we were hopeful that he could lead a normal, happy life.
Developmentally, Jesse was tentative and unsure. He drew back from strangers and was slow to learn new skills. We have seen children shackled by fear, who thrived as their confidence was restored. We worked gently with Jesse, trying to encourage without pushing. Slowly he learned to sit up and play with toys. Cautiously, he began to stand. He was still behind other children his age, but that was to be expected. We were full of hope.
Eventually a place opened up for him at a small and loving home for blind children. We were thrilled – here he would learn from people with the right skills to teach him. He would learn to navigate his world, and be given the tools he needed to move, to communicate, to access education. This was just the chance he needed! In his 3 years at Shining Star, Jesse learned to walk, feed himself and play with others. He was loved and became more confident. He had physical therapy, occupational therapy and speech therapy. He delighted in being outdoors.
Jesse progressed – but slowly. It gradually became apparent that there was another twist to this story. Though he learnt to walk, he preferred not to. He rarely played independently, rarely communicated voluntarily. Finally, heartbreakingly, his hard-won skills began to deteriorate. And then he began to have seizures.
Shining Star took Jesse to the top specialists in Shanghai. He has been thoroughly assessed, and there are still no definitive answers about his condition. His blindness is not the hard part – it’s the neurological deterioration that is truly heartbreaking. So, with the support of Shining Star and the doctors in Shanghai, Nurse Chloe and Yu Ayi travelled to Shanghai by fast train to bring him home. We don’t know exactly what Jesse’s needs will be in the future, but it is clear that he needs to be here.
Right now, Jesse is settling in beautifully. We’re so thankful for all the progress he made at Shining Star . Most of all, we are thankful for their unconditional love of a little boy who always needed a little more time to get there. We truly hoped Jesse’s next adventure would be adoption, but instead he is back in our arms. It’s not what we expected, and certainly not what we dreamed for him – but here we are – embracing our boy and welcoming him home. Tomorrow’s challenges may be unexpected, and Jesse’s life may look different to the life we imagined. But he is home. He is loved, both here and at Shining Star. For these things, we are glad.
The post Jesse’s story appeared first on The Butterfly Home Blog.