A while ago we shared a post about how to survive being stared at. We shared this to help others who may experience this feeling if they themselves have Poland Syndrome. But of course it applies to parents of children with Poland Syndrome and other limb differences.
The happy smiley little boy in this picture is Brody who we met on Facebook (he has his own page don’t you know!) Brody was born with “Poland Sequence” (another name for Poland Syndrome). He’s missing ribs, pectoralis major muscle, and severe deformity of the right hand. All affecting the right side. Brody’s Mum commented on the post about being stared at and we thought it was extra specially important to share with you. We know it’s not just adults who are wary of the stares but parents who feel it too. Here’s what she had to say
Going out in public with Brody is always a bit touchy. Of course I’m proud, so proud to show off my beautiful happy and very special baby boy. His deformities are extremely noticeable. I’ve realized in the past few months every single place we go, adults whispering is what I hear and their stares are what I see. Children flat out ask, what is wrong with his hand and I am more than glad to explain it to them as they are just as innocent, they are curious and need to learn some are born different, they should grow to learn not to pick on those because they are different. Educating children to be acceptable of all people all shapes and sizes is so important to me. As I said it’s adults whispering that I don’t get. It’s hurtful. Just ask me please….I love to educate and bring awareness to Brody’s condition and Polands!
So how do you deal with this scenario? The need to protect your child from unwanted stares knowing they must sense it in someway is overwhelming. It can make you want to walk right up to them and say “Just ask me” or start a conversation explaining about Poland Syndrome. Why not share your own ideas, suggestions or views on this below. We think there is a big need out there on this topic so lets get sharing.
My name is Paula an I am now 46 . Back in 1969 wen my mum gave birth to me it shell shocked her abit . It was a professor Fred ledeski that discovered my polands an new straight away from my abnormalities what he was dealing with . For the next 14yrs I was observed poked an proded an made to stand in a room with a lot of students an doctors an watched ova a decade of how I developed. My mum had died by the time I was 17 an my dad had died wen I was 8. She did tell me wen she 1st seen my hand she was scared an asked for someone to take me away . But she told me wen my father walked in the room he said I don’t care how deformed our daughter is we are keeping her , you got your boy 5yrs ago an I’ve got my girl. My dad died 3weeks before Xmas wen I was 8. When I was 18mths they separated two fingers an then wen I was 2 an a half they did my other fingers . my mum did say she didn’t like the stares an his my hand if if we were out due to the whispers an yes the kids that wanted to no wants wrong with my hand . school was even tougher again with some cruel taunts about my little hand. Then develop as a young girl was enother challenge to be had . But now to listen to other peoples stories especially of how the parents felt it help me understand abit about how mum must have felt. I’ve had the implants that was another night mare in its self . I have so much to share but talking about it is a little unsettling cause it makes me think of how they must have felt an coped.
Hi Paula, sorry for the delay in getting back to you. Thanks so much for sharing with us as hard as it was, you have been through a lot and I am glad that we have been able to give you some insight into your parents perspective. Please let me know if we can do anything else to help. Sam
Sorry for my
Delay as well.
Thankyou so much
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