Why water is the key to happiness for my son
Urvashi Parekh explains how water plays a critical role in her disabled son Yashil’s life, both in helping to manage his condition and to give him joy.
My son Yashil loves playing with water. It’s the thing that gives him the most enjoyment. On a really hot day, we will blow up water balloons and hit them with a bat until they burst. When the water goes all over Yashil, he can’t stop giggling. He is soaking wet, but just so happy.
Yashil’s shock diagnosis at six weeks old
Yashil, now 25, has a rare condition called Joubert Syndrome. A part of his brain called the cerebellar vermis – which controls balance and coordination – didn’t form completely. This causes lots of different issues, including detached retinas, kidney failure and mobility problems.
When Yashil was born, we thought everything was fine. But at six weeks, he had to undergo an eyebrow suspension, as his left eyelid was drooping and we soon learned he had vision problems. After an MRI scan, we were told he had Joubert Syndrome. To say we were shocked and distraught is an understatement – all my pregnancy scans had been normal.
As the years went by, Yashil’s pushchair became a wheelchair. He couldn’t walk or see, and we later learned that he had cardiomyopathy, which means his heart is weak.
Then, in 2007, his kidneys failed. After emergency surgery, which he was not expected to survive, and months in hospital, he came home. He went on dialysis for 12 hours a day.
The importance of water
It was then that water became crucial to Yashil’s life. He was in and out of hospital with infections, making washing our hands essential – to the degree that we installed a sink in our bedroom.
He urgently needed a transplant. Although there was less than a five percent chance he would make it through the operation, Yashil again proved the doctors wrong. He adapted swiftly to his new kidney, which was donated by his dad.
Now, Yashil must drink at least two and a half litres of water every day for his kidney function – but he’ll often help himself to ours too. He also loves to play in water. As he’s reliant on his sensory skills, it stimulates him.
His day revolves around water. It starts with a bath, then we brush his teeth and flush his nose with a nasal rinse. Our bath has an inbuilt jacuzzi, and you’ll often find him in it, paddling away, making the bathroom very wet. In the summer, when it’s really hot, he’ll shower several times a day. He loves going out in the rain, to feel it on his face, or into the garden to be showered by the hosepipe.
As Yashil is non-verbal, his expressions and sounds show us how much he appreciates water. When he knows he’s about to drink some, he’ll sit up by himself, ready to help us put the cup towards his mouth. Until he’s ready to give it up, he’ll hold on very firmly. If his face is dirty after lunch, he will wipe it with his hands until we’ve washed it. He hates wearing wet clothes, so he’ll tell us when he needs a change.
How Sense has helped Yashil
Yashil goes to our local Sense Centre three days a week where the staff know and understand him so well. We’re lucky it has a hydrotherapy pool, where he can enjoy water activities. He can pour the water over his head, or just splash around. If he’s agitated, he’ll put his hands or feet in.
For Yashil, water is the key to happiness.