This weekend I am in Worcester, MA for a meet. I flew in to Boston and had the chance to meet with Dr. Engle ~ one of the doctors who saw her last year. Dr. Engle, along with Dr. Hunter, study Congenital Cranial Dysinnervation Disorders. I was excited when I knew I would be close to Boston and had to take the opportunity to meet with Dr. Engle again, even if Makenna wouldn't be a patient. Dr. Engle and her staff were very gracious to meet with me and give me a small, condensed Neurology 101 lesson. Makenna's condition is far too complicated to explain fully ~ and I've tried to understand it for almost two years now. In a nutshell, for those of you who are trying to keep up:
The average human is contralaterally wired. i.e. - the right side of the brain controls the left side of the body and vice versa. This is not the case with Makenna. She is ipsilaterally wired. The right side of her brain controls the right side of her body. It thinks about crossing where it's supposed to, but doesn't. All of the neurons (or nerve fibers or whatever they are...) get to the right part of the body ~ just on the wrong side. It really is amazing. And I've known that. But I kind of thought that was a layperson's take on it. That of course ,I, as her mother would think that was amazing... but to hear Dr. Engle explain it and identify it's uniqueness and the miraculous nature of her condition... I get it. Especially at one point when I asked a question either about where the point of 'non-crossing' occurs or the return path to the brain (I can't remember now, of course), but the answer was "if it was slightly different, she probably wouldn't have been born". So, she is a miracle. And it's not a harsh realization for me. I don't feel like I was told anything I hadn't already thought; but my feelings were validated.
I remember when I first found HGPPS, and I didn't know if Makenna had it or not, but I felt it in my heart. And I was panicked. And the researchers told me... she'll be fine. It doesn't effect her cognitively and she will live a long and fulfilling life. It will be fine. Manage the scoliosis ~ that's your biggest concern. And I think I've settled so much in that, that maybe I forget what a miracle it is that she's here with us at all. My blessing on this mother's day is simply that I am a mother. I am so grateful for my beautiful Abby and Makenna. They are both miracles and joys. I am a better person for knowing them :)
The average human is contralaterally wired. i.e. - the right side of the brain controls the left side of the body and vice versa. This is not the case with Makenna. She is ipsilaterally wired. The right side of her brain controls the right side of her body. It thinks about crossing where it's supposed to, but doesn't. All of the neurons (or nerve fibers or whatever they are...) get to the right part of the body ~ just on the wrong side. It really is amazing. And I've known that. But I kind of thought that was a layperson's take on it. That of course ,I, as her mother would think that was amazing... but to hear Dr. Engle explain it and identify it's uniqueness and the miraculous nature of her condition... I get it. Especially at one point when I asked a question either about where the point of 'non-crossing' occurs or the return path to the brain (I can't remember now, of course), but the answer was "if it was slightly different, she probably wouldn't have been born". So, she is a miracle. And it's not a harsh realization for me. I don't feel like I was told anything I hadn't already thought; but my feelings were validated.
I remember when I first found HGPPS, and I didn't know if Makenna had it or not, but I felt it in my heart. And I was panicked. And the researchers told me... she'll be fine. It doesn't effect her cognitively and she will live a long and fulfilling life. It will be fine. Manage the scoliosis ~ that's your biggest concern. And I think I've settled so much in that, that maybe I forget what a miracle it is that she's here with us at all. My blessing on this mother's day is simply that I am a mother. I am so grateful for my beautiful Abby and Makenna. They are both miracles and joys. I am a better person for knowing them :)