Finding the right path for a teen with special needs
Dad’s note: In honor of J.P.’s 12th birthday, I’m writing “The J.P. Story,” which looks back at our journey through birth and now approaching teen-hood. I hope you enjoy. The 10th chapter looks at how our extended family dealt with simultaneous pregnancies. To start at the beginning of the story, click here.
Shortly after we learned of our pregnancy and J.P.’s diagnosis, we got another surprise.
Paige’s sister was also pregnant.
It was an exciting time for both of them. There was the proverbial photo of both sisters with their baby bumps, and there was a surprise with both pregnancies.
Paige’s sister was pregnant with twins. While it was a double blessing, it was still a surprise and something that wasn’t in their financial plan.
The twin boys were both healthy and born six weeks after J.P. at Florida Hospital in Winter Park.
Family get-togethers forever changed after the births of the three boys. the adult things we enjoyed, like taking naps, reading newspapers or watching sports on TV after dinner became changing diapers, eating in shifts and burping the babies.
It was a new world for all of us, and it actually gave us a gauge to determine where J.P. should be developmentally by seeing what the twins were doing.
Because of J.P.’s holoprosencephaly, the twins quickly surpassed J.P. when it came to making those milestones, and that’s when it started to sink in that the miracle birth we had witnessed on Aug. 30 wasn’t going to mean our son would be a typical child.
We witnessed the twins play with toys, pull themselves up with the help of tables and chairs and begin mimicking the sounds they heard other people make. They reached for things they saw us holding and sometimes got into it with each other.
For Paige and I, seeing the twins doing all these things was fascinating — and, of course, difficult at times.
J.P. could talk, but he wasn’t forming words. We heard him say, “Boo” first, and he said “Mama,” but we weren’t sure if he was just making noises or meant something by it.
J.P. wasn’t sitting up, rolling over, picking things up or crawling. He would bat at toys and really enjoyed this one music box he was given. He was also a big fan of “Sesame Street” and Elmo.
It’s like our family, Paige, J.P. and I, and Paige’s sister’s family had traveled together down pregnancy highway and had now reached a fork in the road, and we wouldn’t be traveling together anymore.
Their journey would include bikes, sports, homework and science projects. Ours would include doctor visits, wheelchairs and service dogs.
While our journeys would be filled with different experiences, it didn’t mean we couldn’t learn from each other. It’s been exciting to watch the twins grow up. J.P. has gone trick-or-treating with them, and they always help him blow out the candles on his birthday cakes.
We’ve taken J.P. to watch their Saturday morning basketball games and enjoyed weekends together poolside.
As the twins continue their journey through school, they’re completing science projects, exams and writing assignments.
One of them had to write a paper on what they would ask for if granted one wish.
What was written is something I’ll never forget. It was about J.P., and the wish would be for healing, because J.P. could then go to school with them and play sports with them on their teams.
Sometimes I think I’m in a bubble with my struggles when it comes to wishing J.P. was healthy, but I’m then reminded that I’m not in this alone, and to find out a 12-year-old feels the same way I do is oddly comforting.
I only wish I could grant that wish for so many reasons.
Who knows. Some day, one of J.P.’s cousins could end up being his guardian if he outlives Paige and I.
But that’s a chapter for a different day.
Continue to Chapter 11: Uncharted Waters
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Irreverent Musings With A Message
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