She shared that her 14-month-old son, Hart, stood for the first time. In a photo and a video posted on Instagram, the adorable boy stands on a mat in a collared, light-blue onesie as his mother and grandmother watch and cheer him on.
“Hart stood today for the first time! And I’m not talking for a half second, he stood for almost a whole minute!” his 34-year-old mother proudly wrote in the post’s caption. “My mom was there and got to see it and take pics and even a video of the end.”
“Both his PT and OT were there (and this wasn’t during therapy),” she continued. “Only a week into intensive therapy @napacenter and this boy’s development is exploding! (And so is my heart!) What a special and incredible moment! #gohartgo.”
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Hart stood today for the first time! And I’m not talking for a half second, he stood for almost a whole minute! My mom was there and got to see it and take pics and even a video of the end. Both his PT and OT were there (and this wasn’t during therapy). Only a week into intensive therapy @napacenter and this boy’s development is exploding! (And so is my heart!) What a special and incredible moment! #gohartgo
Edmonds wrote that she realized something was different with Hart from “the minute he was born.” However, doctors told her that her son is “fine,” forcing her to “beg” for an MRI.
“Three days later Hart’s neurologist called me,” she recounted. “Hart has minor Periventricular Leukomalacia on both sides of his brain (namely the white matter), but more so on his right. She said that this explains all of my concerns: the rigidity in his muscles, the (somewhat) delayed physical milestones, the lack of fluidity with arm and leg movements, the stiffness in joints, the weakness in his lower back, the somewhat favoured use of his right side.”
“She told me this mainly occurs in premies and since he was not a premie (he was born at 37 weeks gestation) she believes this damage somehow occurred ‘a couple months before he was born.'” Edmonds continued. “She explained that he is at risk for being diagnosed with Cerebral Palsy and will be monitored. Hart has irreversible brain damage, it’s called PVL.”
Since his diagnosis, Hart’s mother and father, Jim Edmonds, enrolled him in the aforementioned therapy. In her blog post, she went on to explain how she has embraced his disability.
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We’re doing it! Hart and I are off to LA for intensive therapy @napacenter! How do you pack for three weeks with a baby? I shipped a lot of stuff in advance and found the cheapest baby gear ever (pack n play, convertible car seat, and high chair). Stay tuned to my stories for a blog with tips! #gohartgo
“I do not see his diagnosis as anything but a gift: we were chosen to take on this special person,” she wrote. “I truly feel as if we’ve doubled down and won the underdog hand. Truly. This doesn’t mean his diagnosis isn’t a challenge… or a little bit sad, or that I don’t feel a little bit guilty. Because yes – just yes – to all of those things.”
“I pray for a miracle and I grapple with how to navigate his life,” she added. “Thirteen days after his diagnosis I finally put these thoughts to paper. This is a heavy challenge as a mother: where do we go from here? This is where: one foot in front of the other.”
The Edmonds also share a 2-year-old daughter, Aspen.
See the sweet post above.
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