Schizencephaly Awareness WeAreRare.org

Certainly we love sharing stories, pictures and updates about our day to day and our children in therapy... all the things that we're supposed to do and share when you're on social media. Building connections. But the truth is is that some of us do have high levels of anxiety PTSD stress and social anxiety over the simplest things that can be triggered by just about anything. A conversation can take a drastic turn,  social media is a great place to keyboard scream then block,  walk away and feel a little better about yourself.  Most special needs drama I see occur are from people that don't necessarily like to be upset or angry... Rather just may seem a little more fragile than another parent.  Even a simple outing can be triggering depending on the day before or the morning.  Hell you may even just get a trigger first thing when you wake up in the morning that sets up the environment for the rest of everyone else's moods.  And our energy's do connect so

This year in May we celebrated Schizencephaly awareness day and noahs sixteenth birthday with two other Schizencephaly families at noahs favorite place....Island dolphin care.   So many great memories were made this year we've decided to take him back this August making sure we continue his ongoing interest in the program.

http://wearerare.org/2015/11/11/noah-and-the-ny-jets/ watch David Harris send a special message to Noah

25.00 donation to We are RARE sizes unisex youth small $21.00 USD youth medium $21.00 USD youth large $21.00 USD Adult small $21.00 USD Adult medium $21.00 USD Adult large $21.00 USD Adult xl $25.00 USD Adult xxl $25.00 USD

http://wearerare.org/2015/02/17/ethan-februarys-schizencephaly-super-hero-month/     Ethan! February’s Schizencephaly super hero of the month Posted on  02.17.2015   by  Tricia Dennis Parents Terrie and Larry Randolph write Ethan Wayne Randolph born in Dayton, Ohio on Nov 3, 2008 with Schizencephaly. We initially were told of his condition during an ultrasound at 7.5 mos gestation. At that time we were told the best thing we could do not only for Ethan and ourselves but also for society would be to go out of state and have a late term abortion. The Dr stated it would be for the best as he would most likely be nothing more than a burden and would never have a quality of life as he would most likely not ever speak, play, walk or anything “normal” babies and children do. To this day I can still vividly hear those words being spoke to our family. We knew Ethan was a special gift that was being given to us and we were going to keep and love him for as long as we could even i

It has been two weeks on Wednesday since Noah's spinal fusion and I will admit fear was a huge issue with this one. Never did I imagine seeing my little boy look so banged up. His eyes were bloodshot, black and blue with a very swollen face. The night before I was prepped with the fact Noah very well may not make it through or quite possibly require a trach for the rest of his life.. Scary and sobering all at the same time. After xrays the day before we learned Noah's scoliosis had reached 94-97 degrees which is 40 degrees more than just a year ago which convinces me that scoliosis is indeed a huge part of schizencephaly. We waited until Noah was old enough to avoid multiple surgeries through the rest of his life....one and done! But holy cow scoliosis is hell. The constant fighting it, struggling to make our own braces, 6 years or positioning and holding off to avoid going back under the knife. It would appear that all that hard work made a difference and Noah will never