Super Connor!

Super Connor poses with blanket

“At Super Connor’s diagnosis, we were told that he may not live past his first birthday.  Super Connor was diagnosed at 3 months with infantile spasms, the most catastrophic form of epilepsy.  He had up to a hundred seizures a day that halted and regressed any development. Every seizure was scary.  Some lasted up to 25 minutes. The scariest moment was his brain surgery.  No parent ever wants to go through that with their baby.  It was our only option left after 2 years of failed medications. Super Connor had a right temporal lobe and occipital lobe resection, so he had 2 entire lobes of his brain removed about 2 weeks after he turned 2.

From day one, Super Connor has always been a superhero and a fighter.  He was diagnosed with neurofibromatosis at birth, infantile spasms at 3 months, and autism at 6 years old. Based on his prognosis that we were originally given, he has exceeded what we thought he would be able to do. He’s been through more than many adults have been through, and he has never let his disabilities stop him from trying to learn new things. He’s silly, happy, and has a way of making everyone smile!  He seriously is always so happy and is an inspiration to all that know him. He tries very hard to learn new things. Super Connor loves Mickey Mouse, country music (Thomas Rhett is his favorite), baseball, riding in boats, mostly anything outside, potato chips, cookies, and playing with his brother, Jacob, who is 18 months older than him. 

Jacob was so young when Super Connor was very ill, so having a special needs brother has always been part of his life.  He’s absolutely amazing with Super Connor, although I know it can be challenging for him, especially when he sees how other siblings interact with each other. For example, Super Connor is terrified at most doctors appointments. He does not have much trust in what they might do to him. His brother, Dad, and myself comfort him when he is scared. He loves snuggles, so that usually helps. 

I think the most challenging thing for Super Connor is being able to communicate with us. He’s about 4 years behind (cognitively) than his peers. His vocabulary is increasing, but he is still very much nonverbal as far as having a conversation with him. With that being said, Super Connor is the happiest kid that I know, and I’ve been a teacher for 18 years so I’ve seen a lot of kids.

When I was pregnant (with both boys), I had this idea of what my sons’ lives would be like. What they would be like, accomplish, etc. Super Connor gave me a new perspective. The journey definitely is not the one that I would have imagined, but he sure makes it a lot easier to go through it. All the things that I used to think were a big deal no longer are. We don’t take anything for granted with him.”

   

This has been a superhero’s origin story from Super Mom Mindy Ostrowski.

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