00:00I actually remember right before we left the hospital, the pediatrician came in and she's like,
00:05well, I don't really have anything to say. Like he looks perfect. And I'm thinking, well, yeah,
00:09of course he does. I was changing his diaper. He raised his arms up and looked to the right
00:25and his eyes were like fixed to the right. And he just got really stiff and his face got red.
00:33And I picked him up. I was like, did he stop breathing? Like what just happened? And then
00:37he was like, fine. Something like in me just knew that it, something wasn't right. You know,
00:43we called the pediatrician, made an appointment for, I think it was like the next day or something.
00:47And I took him in and I specifically said, like, I think he might've been, I think he might be
00:53having seizures. And the pediatrician checked them all out. She's like, no, he, he looks perfect.
00:59Like it's probably fine.
01:12I remember the one time I was like nursing him and it happened. And I was like, wait,
01:17this is happening. And he's not able to nurse. And it's like, something is really wrong.
01:22We went back to the pediatrician. She's like, she, she was like, if it'll make you feel better,
01:27I'll give you a neurologist referral.
01:36First thing he really says to me is, so tell me about his head circumference.
01:40I just look at my husband with like wide eyes, like something's not right. And he said, no one's
01:46ever told you about his head circumference. It's really small. And I was like, okay. Like I literally
01:53have chills, like telling this back. It was yeah. Um, really shocking.
02:03Like main neurologist. She said, so like we got his results back and, um, Benjamin was born missing part
02:11of part of his brain. And she's like, and the rest of his brain has many malformations. And I'm just
02:17like, like, I'm truly just in complete shock. So she said a lot of children like Benjamin, they
02:23are not able to walk. They use a wheelchair. They need a feeding tube to eat. They aren't able to
02:31talk. Yeah. So it's like, this is your new normal and see you later.
02:46I actually was so relieved to hear that he had TB1A because I went home and I just started like
02:54researching, researching, researching at that point. Um, and I found Facebook groups for
03:01tubulinopathy and like TB1A. I was already like connecting with other parents.
03:06Um, you know, if there's another parent that is like new to this journey, um, and they're feeling
03:21like really lost, I hope that if they find my videos, they just like feel hopeful and, um,
03:32encouraged. This life is not how I imagined it, but just because it's different doesn't mean that,
03:37you know, it's bad or it can't still be like as amazing.
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