Thursday, January 24, 2013


Wow a post 2 days in a row..who am I ???

Today something extraordinary is going on.Today is full of love,education and acceptance for Owens syndrome.To see all the support from our friends,family and strangers is pretty amazing.It starts with a post.One simple post.That one post gets shared and eventually after a BIG game of tag there are hundreds of people who know about Moebius Syndrome.Hundreds of people sharing acceptance and knowledge of other peoples struggles.

I hope everyone takes this day to not only acknowledge Moebius Syndrome but to teach your children to accept others even if they are different looking,shy, have a different personality or different beliefs then you.As parents we are the ones who mold our children and teach them right from wrong.Teaching them to accept others is part of doing right from wrong.As adults I hope you take today to look at your relationships with others.How do YOU react when you see someone that is different or not to your standards? I hope you take today and pledge to change your thoughts and actions.

I want to again thank everyone from the bottom of my heart for all the support and love you have shown us in the last almost 2 years of Owens life.This is a journey we are on and Im so happy to share it with all of you and spread awareness to others.Mark your calendars For Jan 24th every year and don't forget to wear purple to show your support!



Wednesday, January 23, 2013

The unexpected

You would think by now I would get use to going to an appointment for Owen and it not going as it was suppose to,shocker the answer is NOPE ! Every time I have the same feeling of shock and the thought of "what the heck just happened".

Its a familiar feeling of anxiousness as you check in. Politely ask how the receptionist day is.Sit and listen to the other parents stories of why they are at the specialist.Wish them luck as your name is called and patiently wait for the doctor.

Dr.O'Halloran is our favorite doctor out of all of Owen doctors.While they are AMAZING doctors and im thankful for each one of them, there is something about him that makes you feel comforted and confident in his abilities as a doctor.At four months old he was our first specialist we were able to get into.He is the one that diagnosed Owen with Moebius Syndrome and started our rounds of test to confirm it.He is always patient and fully informative. From that very first visit he told me that Owen would have to have surgery at some point on his eyes.He would have to get the muscles tightened and a gold weight in his eye lid to help him blink and close his left eye.I processed it but moved it to the back of my "saved thoughts" I guess pushing it off till the time came.Well today was the day I had to process those thoughts.

Its almost like a hot flash when it hits you.Your whole body starts to get really really hot.You want to wipe the sweat off but you don't want to show fear. You nervously interact with your kid to try and not show your emotion of being upset of the news you just herd. I personally start fidgeting with my hair as well and tend to try and put it in a bun that falls out a thousand times and wont stay in place.Every time Dr.O'Halloran sees me in a moment like this his words are always,"we have talked about this before there are much more difficult things in the world that he could have." These words are spoken with a comforting tone. A tone that it will be ok and he is in safe hands.

Today it was decided that Owens eye is getting worse.He wants to do surgery on it as soon as possible.He will be putting a gold weight in his eyelid to help him blink and keep the eye closed as well as tightening his eye muscle to help with the cross-eye and the placement of his eye.  Owens eye is severely dry and his cornea is drying out.It is almost at the point of causing damage so he will purposely clog the lower tear duct to try and help the eye stay moist. Currently we put gel drops in his eye during the day and a lubricant gel at night.It is not helping him in the way they thought it would since Owen cant close his eye properly.

The thought of surgery is very scary.Its not the most invasive surgery and I can process that, but as a mom any time you don't have control over what happens I think is a terrifying thought.For me the scariest thought is thinking about saying goodbye and kissing him as they put him to sleep.I know he is in great hands and I hope in a couple months when its all over with I can look back and feel silly about my thoughts of being so scared.For today I am going to have my pity party of being upset about it.Tomorrow I will put my big girl panties on and move forward.

A very friendly reminder is tomorrow is Moebius Syndrome awareness day.We wear purple to spread awareness and support to others about Moebius Syndrome.I cant wait to see all the pics of our family and friends wearing purple.