Riverside Adaptive Swim Program: Mother & Son Navigate Uncharted Waters
By Sheryl Wilde
Life is like a journey …
The eyes fixed downward – it is a trait known as “sun-setting.” The most obvious trait though, is the unusually large head size.
“It was a difficult pregnancy,” says Susie Henson, Nick’s mom. “Problems were diagnosed in utero. The doctor said that if I continued the pregnancy, if my baby boy survived at all, I would be lucky to spend an hour with him.
“Nick was born with very significant hydrocephalus. His head was SO big. But I didn’t even see it. I was completely in love with Nick the minute he was born.
“It was a difficult birth. Terrifying. I was told over and over by the doctors and nurses that he would not live. But Nick’s attitude from birth was, ‘You’ve got another thing coming! I’m here!!!’ He was striving from the first minute.
… into uncharted waters for us all …
“From then on, life was completely different. But I never, not once, felt life was over. It never felt that way to me. I thought, ‘I can be upset and say life is terrible, or I can say this is an opportunity to see the world through another set of eyes. What does it look like?’
“Parents are often so concerned about having the perfect child. Nick gave me a whole different perspective on life. I hoped that somehow I could help others understand that while Nick may not look like others, he was perfect too.
“During the first year, it became clear what the future would hold. It was a tough year. Intimidating. Any infant needs a lot of care. Nick needed more. A lot more. He was having seizures. Bad seizures. And a host of other medical issues. I was a single mom. I was up all night feeding Nick and giving him medications for seizures. During the day, I was taking him to lots of doctor appointments. I also had to work a full-time job and keep my head on straight with no sleep. It was hard, but we were both OK.
“Then, when Nick was about four months old, he was diagnosed as being blind. That hit me like a ton of bricks. For me, there is so much joy in the small things in life.Seeing the sky at sunset. Seeing the stars. Seeing the green of the hills. Seeing all of that beauty brings me such joy. And then, along with everything else, the doctors told me Nick would never be able to see.
“I was devastated, barely functioning. I cried for two weeks. But then, after those two weeks, I thought, ‘Crying is no good!’ I snapped out of it. And that was the end of it. It was time to be action-oriented and positive. Being positive is a choice. I knew we could get through it. I knew we could be a good pair together.
If you become preoccupied with avoiding potential pain …
“Nick just turned 20 in October. We have had so many good years together. There have been lots of struggles – but they have been really, really good years.”
“Susie has been a life-long caregiver for Nicholas,” says Shannon Reilly, QIDP/AMountain Shadows – Riverside
. “She is super devoted and passionate about him.
“Nick came to Mountain Shadows in May of 2016. He has Cerebral Palsy, a seizure disorder, and has been diagnosed with a profound intellectual disability. He’s non-verbal and non-ambulatory. He’s also cortically blind. But he can hear. He can feel. He can touch.”
“Moving Nick to Mountain Shadows was hard at first,” says Susie. “It took a year of counseling to make the decision. I had so much doubt. Did I do the right thing? Is he miserable? Does he want to tell me he wants to come home? But now I see him and he’s well-adjusted. He receives great care. He’s with similar people. The care staff is always there. It’s the right thing.
“I knew Nick was home two months after he moved into Mountain Shadows. I went to visit him at the house and everyone was there – Christopher, Lexi, Hydria, Marquez – all of his roommates. And they were all so excited to tell me all about Nick and what they had done that day. They were laughing. I could see they really cared and were interested in Nick. They could recount his day! They were keeping an eye on him.
“They all have dinner together. Everyone talks. They engage. Every time I walk in the house, everyone shouts ‘Susie!’ – like with Norm from Cheers. I love it.”
Adds Shannon, “Mountain Shadows is not just a facility to Nick and Susie. This is home – and Nick’s roommates are friends. He loves everyone and they love him.
You will miss the glory of the sunsets …
“When we started the swim program at Cove Water Park, Susie was interested and wanted Nick to participate. The Mountain Shadows Foundation agreed to pay for Nick’s lessons and purchased swim toys and pool rings for him.
“Nick normally keeps to himself. He loves attention, but doesn’t seek it out. Swimming is one-on-one. He gets so much attention – and he loves it! He loves being in the water. He did great from the very first day.
“There are so many benefits to the swim program – the sensory inputs, the feeling of buoyancy, the sounds, the social aspects.
“Since Nick has been involved in the swim program, I’ve seen positive change in his range of motion. He’s pushing to do new things. He loves being in the new environment and being around people. It’s been a very healthy change for him.
“Susie was at the pool on the first day of classes. I could tell she wanted to get in the water with Nick, so I told her she could go in. And when she went into the water, it was amazing. Nick can’t see, so he attaches to voices. When he heard his mom’s voice near him, he was so excited!
“Then, from the side of the pool, I asked Susie, ‘When was the last time you got to hold your son?’ She just stood there quietly in the water for a while, looking at me like she might cry. And she said, ‘I can’t remember.’
… on the ocean of your life …
“And then – it was so beautiful! Susie opened her arms wide and, due to the buoyancy of the water, Nick just floated right in to her outstretched arms. And she held him – she held her son in her arms again, much like she would have cradled him when he was a young boy, for the first time in more than a decade. I could see the smiles on both of their faces from all the way across the pool. They were just beaming! There was so much love between them. It was so moving. It was a great reminder of why we do what we do.”
“It was a beautiful moment for both of us,” says Susie. “Due to Nick’s condition and his size, it had been a long time since I’d been able to hold him, really hold him like that. We both needed that.
“Everyone at Mountain Shadows is incredible,” says Susie. “The care givers are amazing. I know they do what they do because it’s in their heart. That’s so evident every time I go there. It’s not about the money for them. They are there because they have genuine compassion for all of the children. I am so grateful for all they are doing for Nick. I know he’s at a good place now. I know he’s home.”
With his eyes fixed downward, Nick may never see the sun setting across the sky. His ocean, for now, may be a pool. Yet there is such glory in his life – in the sound of a voice reaching out to him through the darkness, and in the feeling of touch – a mother embracing him with love.
And he is the perfect child.
Life is like a journey into uncharted waters for us all. If you become preoccupied with avoiding potential pain, you will miss the glory of the sunsets on the ocean of your life ~ Teal Swan