Poorva Chavan
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Written By: Poorva Chavan | Updated : October 6, 2015 12:43 PM IST
Raising a child is an ordeal in itself and when the child has special needs it's even more difficult. Even if there are hardships, the joy that comes with raising your baby and see it grow is second to none. Brandon Buell, from Florida, USA is one such proud dad. Brandon's son Jaxon was born with a rare medical disorder called micro hydranencephaly which is characterised by a partial lack of a brain and a skull. Jaxon has just turned a year old and Brandon and his wife are proud parents.
Brandon recently opened up about his challenges and progress faced by Jaxon in his blog post on Facebook.
He wrote,' It s hard not to think about how this all started and where we are today. Most importantly, Jaxon is still here with us, still learning, still developing, still thriving. He s back to smiling at us, always so happy in the morning after he wakes up and takes turns looking at both Mommy s and Daddy s face, seemingly as if he is so excited to start another day. He is talking up a storm these days, truly teaching himself how to communicate with us in his own way, in his own language, and we actually understand it after learning with him for these 13 months.'
He continued,' I love that. Jaxon is simply that, Jaxon. He is so normal in so many ways. He is a baby who is dealing with teething, he cries when he s hungry, he hurts from gas pains, he throws ups, he cries, he poops, he sleeps, he repeats. For our family, it s also normal to feed our baby by feeding tube. It s normal to embrace him as he goes through his startle seizures multiple times a day. It s normal to look at Jaxon and see a perfectly created boy and other babies truly do look weird and oversized to us. And, it s normal to take Jaxon in public and always feel the looks, the stares, and the glances, usually from people that don t even realize that they re doing it.'
He also opened up about how Jaxon's story is completely misunderstood and people have opinions about him without him even meeting or knowing him. He also said that people call them selfish parents for not choosing to have an abortion and also for having a Facebook page and a Go Fund Me page. He further wrote, ' If you research Jaxon s diagnosis, Microhydranencephaly, you will read a 100% accurate description of what Jaxon has endured and what he goes through on a daily basis. It states that infants will go through a stage of severe neurological irritability and be inconsolable shortly before they turn one. This phase sometimes claims these babies lives, and there were certainly moments when we felt like we were losing Jaxon. However, if a child can make it through this difficult time, they settle down, return to who they were and how they acted before it started, and there are cases of Microhydranencephaly children who have lived into their 30 s, have lived relatively normal lives, can learn to swim, and have and can use their senses, as well. Yes, there will be difficulties and struggles and limitations, but they recognize their family, they learn to communicate, and Jaxon is certainly on his way in all of those aspects.'
Talking about their family, Brandon simply calls them an ordinary family with an extraordinary son who doing their best with what they have been given. Here's is Brandon's Facebook post.
Overdue and honest words from Jaxon s Daddy As I write this, my son is sleeping in the other room, comfortably,... Posted by Brandon Buell on Saturday, 26 September 2015
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Image source: Indian Express
