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The story of my sweet Nora.
The story of our heartache that became the story of our why.
7.31.19 - The welcoming of a sweet baby girl, Nora Blake. The day I became a father, one of the most special days of my life. A day I was looking forward to for so long!
She was born absolutely perfect!
Our first months as parents were amazing. My wife played basketball at Butler and I am a huge Colts fan, so we took Nora everywhere. We really believed the mindset of us not changing our life but rather bringing Nora with us to the things we enjoyed.
Nora was the CUTEST little baby, so calm, so happy and observant. While Nora did have a delay in acknowledgement, never mimicked us, laugh much and had a slight stare to hear eyes, we never suspected much.
One day, Bri and I (Nora in my lap) were sitting on our front porch, a common spot for us, Nora had some odd bodily movements, slight collapse may be the way to put it.
Then one night as we were getting ready for bed, more movement sparked. Odd stares and her arms flaring up for a moment or two.
We knew something was off.
We consult with our doctor and then had to take Nora to Riley Hospital for an EEG Brain Scan, an overnight stay with Nora hooked up with roughly 40+ wires to her brain. It’s Covid at the time so only one parent could attend and with Bri breastfeeding, I was the odd one out. This was one of the hardest days/nights of my life. I felt helpless, scared and in no control of the situation.
Nora came home 24 hrs later and our lives were never the same.
Nora was born with a genetic abnormality called Dup15Q and those movements were seizures, infantile spasms to be direct.
For the next 24 hour months, Bri and I feel never broke eye sight with Nora. These seizures aren’t what you see in the movies, they’re so subtle but so devastating to witness and even more to her brain development.
Worst part about it, there is no solution aside from trial and error. First with steroids, Nora ballooned up, then another medication, then another and another. At one time Nora was on 4 different seizure medications. Nora’s brain is firing all day long and then mixing these medications made her so sluggish, almost sedated. Broke our hearts to see our little girl suffer.
I would hold my little while seizing 15+ times a day, some as long as 20-30 seconds and there was nothing I could do…
We started to get control of the seizures and we’re able to get down to only one medication, but the challenges didn’t start there. Nora was only able to play on her back at almost two years old, couldn’t roll over, couldn’t sit up.
Nora only laughed twice in the first two years of her life, because of her abnormality.
Bri and I mental health, physical health plummeted through this. We were crushed, stressed beyond belief and crying all the time.
We lost friends, support from family all because our little girl was suffering and few crossed the line of trying to understand what we were experiencing. While bri and I grew closer together, there were times we felt we had no one else in our circle.
Here is where the story takes a turn.
One thing people will know about Bri and I, are that we are fucking hustlers and beyond resilient. Place a bet on us and we will make it happen.
We get Nora everything we could give her to improve her quality of life. PT, OT, Speech, you name it, we’ve tried. I took Nora to Nashville, TN for a 3 week intensive therapy.
I raised over 25k from a bourbon raffle to offer her more than we could ever dream of giving her.
Fast forward to today.
Nora is a DARLING ANGEL.
For those who have the luxury to meet her, she sees only the best in others. She will greet you with the deepest hug you’ll ever have received, enough to stop you and make you think twice about what love feels like.
Nora teaches you about patience. As a little girl, now 4, who is non verbal, limited mobility (she can crawl), her needs can’t be met with a world of chaos.




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