In an instant everything changed.
I went from single mom life with four cutie boys, to a medical mom and caregiver on top of it all.
I remember when Chris, Benjamin’s dad, first talked to me about his concerns regarding Benjamin’s development. Benjamin was a little over a year old and at that time I did not have the ability to see his delays. I wasn’t trying to avoid it, I simply didn’t have the knowledge to see what Heather, Ben’s (bonus) mama, was noticing. I have a basic education in early childhood development, I have nannied for numerous families and I have 12 nieces and nephews. I thought I had pretty good experience. I had seen how differently kids develop. Some hit milestones early and some hit them later. I was leaning very strongly on that experience when I wasn’t worried about Benjamin. I thought he was just taking his time. Thankfully, Heather is an early intervention specialist and she could very clearly see the delays that I probably wouldn’t have noticed for much longer.
He got evaluated by the early intervention specialists with our local Office of Education and it was quite clear that he had a number of different delays and needs. This brought up so many feelings for me. Initially I felt really dumb. Honestly, I kind of still do. I should have noticed. Why didn’t I notice? And I also feel incredibly grateful for Heather speaking up about what she saw. She was dating Chris and relatively new to our lives. I am sure that couldn’t have been easy for her to bring to Chris and for them to bring to me. But goodness, am I so glad they did.
The timeline is a little squirrelly in my head, but I think right around the time of therapy beginning, Ben also began having seizures. He had one seizure in summer that they blamed on a fever, which is typical for infants with a fever. Then on Thanksgiving morning 2019, a morning that is forever burned into my memory, he had another and more extreme seizure. I feel like it has been an ever expanding snowball of physical and developmental complexities. We figure out one issue and another presents itself. It’s rather exhausting. We had one genetic diagnosis in 2020 that was quickly recalled. Like a bad box of cereal. A year later we got his current genetic diagnosis of Nicolaides-Baraitser syndrome. And the snowball continues to grow.
In an instant everything changed and as the days roll on the change continues. I am working desperately to adjust to that reality. We will be chasing this snowball down the hill for the rest of Benjamin’s life. I’m tired just thinking about it. I should try and figure out how to start a snowball fight or something. Instead of lemonade out of lemons, I’ll create a snowball fight out of a giant snowball.
Wish me luck!
andie