Jay The Super Hero

Being a mother of TWO I feel so selfish many times just speaking about one of the kiddos or always addressing one of them not both of them. Everyday I am learning how to be a parent who always acknowledges both of them while one of them requires a little more ( more like a lot of more) of my attention. Im not saying I'm perfect because about 70% of the time I feel like I'm failing as a parent. We all feel that way sometimes right?! Its not just me..? Well here's a little background about my superhero I won't go into every detail because through different posts ill explain different parts but meet Jordan Jay LaRocco my child with a terminal disease.

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#jaythesuperhero was born with a terminal neuromuscular degenerative genetic disease called Giant Axonal Neuropathy or what we call for short GAN. We were diagnosed in 2014 or 2015 I forgot with so much other stuff his life consist of. When we were diagnosed there were only about 30 people in the world with it meaning we were one of the 30. THIRTY!! did you guys read that I said THIRTY, IN THE WHOLE WORLD. What are the odds right?! Well in normal parent fashion my question after the diagnosis was "alright so what's treatment to fix it" his providers answer wasn't nice. I was informed that my son had no chance at life. That he would live past 30. That his body was going to just start failing him slowly. WHY why WHY in the world would this happen to us! I asked myself that questions for sooooooo many years all those years I was so lost and depressed and just trying to figure it all out while being in my early 20s. Jeez what a cluster mind mess I was. Well as years past by and we saw a bunch load of doctors, therapist, counselors, scientist in different states guess what... the diagnosis didn't change I was still loosing my son by the day. Fast forward to 2020 he is now 10 years old things are getting worse and now from being told years ago you probably have about 15 years more with him we now hope for 10. He's declining so quickly and we are loosing so much cognitive ability that holy smokes this is getting very scary.

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Have you met Jordan though?! if you have had the chance to mingle with my right hand man you will see how full of life he is, how positive he is, why Im still sane. He loves to dance, he loves to talk, he loves meeting new people and he adores loving others. Jordan is here to show us that being kind is what life is about that no matter what you are going through he won't ever judge you he will love you because he knows what it feels like to be different.