The Most Common Rare Syndrome You've Never Heard Of

Wednesday, March 12, 2014

Lee Robinson--Growing Up with a Soldier

This is a short story on what growing up with a brother with noonan syndrome is like from my point of view.

I am 22 and Connor is 20. As children Connor and I were the best of friends. I have little recollection of knowing he was different until primary school.  At that time he was bullied a lot for being different. I was very protective of him, getting into fights with those that bullied him.

Eventually Connor changed schools because the school he was at refused to believe my brother was being bullied. Secondary school was even harder. During that time he became ill a lot, and I was old enough to understand how sick he was.  I found it heart breaking to support him while struggling with my own mental health challenges.  I could not get a handle on things as I felt pushed aside. As a teenager I did resent him, even though I loved him to bits and would fight for him.

When I was no longer in school with Connor he was bullied by both teachers and other students and I was no longer there to protect him. He did not tell us he was being bullied until he left school because he was scared of how I would react.

Throughout all the crap he was still suffering from different health issues. But I continued to support him, trying my best to understand Noonans. He was also my rock when I was diagnosed with schizoaffective disorder, even though he doesn’t understand it to this day. He tries his best and for that  I can’t thank him enough.  

When our mum took ill a few years back he became withdrawn.  I became the main caregiver for him.  That time was hard--I had to be strong when I just wanted to cry. I still remember his voice telling me things would be, “ok.”  It’s something I will never forget because I was the big brother but he was the strong one that day. Through it all we all came out the other side together.

Dad left when Connor was born, and was a part time dad for 8 years until he got remarried and just disappeared. I struggled with him leaving, and was always very angry with him. Connor has never had a bond with him so he has never spoken about him even though it must upset him at times.

Connor is the strongest person I know and I look at him like a soldier. Nothing has ever beat him even though he struggles every day with his health. He still has a smile for me every day and I love him so much .

As I was writing this he came and hugged me for no reason .

I am writing this to let everyone know that you come out the other end the winner and the struggle is worth it just for that beautiful smile, or once in a blue moon hug. So for anyone with a sibling with Noonans  just remember their struggle is so real to them, and the best thing you can do is just be there with a smile and a hug when they want it.

Writing this was really hard as I am thinking on the bad times which is something I try not to do but hopefully someone will realize when they read this that you can get through it .

I am proud when I look at Connor now as I know I helped make him the man he is today, and I could not ask for a better brother as I love him to bits.


The article above was written by a guest blogger. The opinions and ideas written belong solely to the guest blogger. Noonan Syndrome Foundation DOES NOT endorse political candidates and religion or religious preferences.
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