When Ben was ten months old, he was diagnosed with Spastic Quadriplegia Cerebral Palsy. Since the kids were ‘micropreemies’, every couple of months we went to Lurie Children’s Hospital NICU clinic which basically was a followup to make sure the kids were growing and developing steadily and typically. At this particular visit, they had a developmental physiatrist there to talk to us. He informed us that Ben had CP – not just CP, but a very severe form … his full body was affected.
A few months after that, at just 13 months old, Ben got a gastronomy tube (or g-tube) for feeding. He was unable to orally take in enough to make him grow. The CP was preventing him from coordinating the suck/swallow/breath reflex and he did not have the stamina.
At two years three months in October 2014, he got Botox injections in his hips. This sounds crazy, right? Apparently, it helps loosen muscles in spastic kids for better hip development.
Also at two years three months old, he first went on Oxygen. I took him to the hospital for an out-patient test, and he would finally come home ten days later with an oxygen tank. After that, he couldn’t effectively live without it.
At two years, four months old he started having seizures. He was always ‘at high risk’ but was eventually diagnosed with epilepsy once the seizures began.
From November 2014-April 2015, he would have six more hospital stays for respiratory reasons. At the time, I would joke that we were ‘averaging one a month.’
In addition to all of this, he was going to six therapy sessions each week – Physical, Speech and Occupational. And he had severe GERD ... very very very very bad reflux.
Throughout 2015 and into 2016, I felt like ‘nurse first, mom second’. All of his medical and physical needs were all just second nature by this point. But in early 2016, Ben qualified for 24 hours/week of at-home nursing care.
I realize all of this sounds pretty grim … but my point will be that during this time, we also took family vacations; we went to the zoo, circus, museums, aquariums and nature parks; we went to the pool; we had birthday parties; we went to birthday parties; we had playdates; we ate at restaurants; we went shopping; we went trick-or-treating on Halloween and Easter egg hunting at Easter. When he was three, he went to preschool in a blended class with typical peers! He made friends. He went to church. He had connections. He loved to play. He did all the typical things that young kids do.
Kids are still kids. Yes, Ben had medical and physical struggles, and he was nonverbal. But he was still just a kid doing normal ‘kid things’. Ben’s Adventures is about a young boy who loves to enjoy life, who goes on great adventures, who spends time with his friends and family. After he died, it was important for me to show the kind of life Ben lived. To me, he was always just a kid (my son) first.
You’ll see a children’s book with a main character with special needs, and you’ll be filled with positivity and hope.