hi. I’m here to see if anyone has advice about how to support my wee boy, Devin. He has cystic hygroma which is a rare lymphatic malformation which causes cysts to grow on his tongue and neck.
he is a wonderful wee guy and despite about a million hospital admissions, being on oxygen for the first year of his life and undergoing extensive tongue reduction surgery last year he is a happy, smart and fun wee boy.
he doesn’t take medication and can speak, eat and breathe normally which I am incredibly grateful for.
recently though he has become anxious and is showing signs of worry a lot. I want to help him navigate life with people staring, pointing at him and making comments in a really positive way and have always encouraged him to be open with people and tell them he has a condition that he was born with and that he doing great 👍🏻 However I don’t know if this is the right approach as he is chronically shy and so scared of new people and places.
I want to get it right for him and give him the love and support he needs to be resilient and have great self esteem. Any advice is welcome 🤗
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Mcdonnella12
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Hi Mcdonnella12
A big welcome. It's great you found us.
There are lots of folks here with different conditions and with different stories. So you may get lots of answers! You are completely OK to choose what works for you.
Now,I have cysts too, not the same as your lovely young fella, but I have lumps and bumps in some very obvious places.
And i get stares, and i get abuse, and I get, frankly, hilarious things happen too.
I have had these for over 30 years. Got bullied at school, ended up a Pink Floyd fan as a result (long, long story ......!).
But as a result, i am the person I am now (aged 50 give or take! ) due to one major factor.
That is, the unconditional love and support of my wife, the friends I have, and mostly, my parents.
They did have to endure me getting bullied. and i would not want that to happen to anyone, but oddly, it meant that my parents taught me to be more resilient and self dependent than i perhaps would have been HAD i NOT had the cysts and the abuse that came with them. From those friends I had at school, I took on the shared love of common interests, and that can bind people together much stronger than any division.
So perhaps because of my condition, I have always known that I have rock solid support from various quarters. You can't buy that. That support started early,
It reads to me that you want to provide that same support framework for him. That rocks.
I would start with listening to his worries he has now, and he will start to learn that he can talk to you and trust your opinion. In time, he will need to learn to make decisions for his own care himself, so establishing a supportive framework is going to be so beneficial. When he's older and when issues occur in future (and sadly, they will.... just last week i had a spirit healer tell me my lump was as a result of a previous life! another long story!!), then he will know where to get support, or advice. That is gold dust. you are never alone if you have a ready made framework.
I would not for a second say your approach is wrong, and particularly like the line "I'm doing great!".
If it gives you some reassurance, i was chronically shy at school. and basically the school nerd-computer-science-speaks-binary-and-likes-physics .......
Come 50, I'm an IT, married to a beautiful Mrs CB, enjoy travel and promoting animal welfare. Its just I still speak binary and like physics! (duh! something never change!)
Don't believe any hype that this will hold him back. There will be hiccups. Dealing with them though can just be down to experience, though i agree, i hate that that experience is ever necessary. Lots of people will come up with different suggestions. Don't be frightened to try one and if it doesn't work, try something else.
I would start just be listening to his worries. You don't have to answer them right away, but start building that supported ever present framework, and you will find your way with this, i can assure you,
You're welcome. You're right that it will be new to the school too. That said, do remember that while they may not have heard of a cystic hygroma, they will have other children who have medical conditions too.
While I can't say for sure (I'm not qualified), but this is probably covered by the disability discrimination act (UK assumption here!)
While I never advocate using that to your advantage, knowing that may help deal with any administrative issues the school has.
In a way, it is kind of good that they don't see it as a big problem (that's the world we need to get to really!), but I can see it may feel like they have dismissed it somewhat depending on how that is said to you.
One thing I would say though, if you do ever encounter bullying at school, DON'T let the school deal with it by saying "please don't bully your son because he has ......".
The link with the condition has to be broken.
It should, in my thinking, be "Don't bully your son.... full stop" (without the please!).
I hope you never have to have those conversations though!
Best of luck, do please keep in touch, as we will always be interested in hearing in how your getting along.
Hello Mcdonnella12 and welcome to the Changing Faces Community! Thank you for your post and for sharing about your son’s story, it would be great if you find some people to connect with here (parents or not) who might have been through similar situations and I can see that you have already received a warm personal response from one of our forum ambassadors. You may be interested, also, in our self-help guides for parents and children - you can find these here: changingfaces.org.uk/advice...
It's wonderful to hear that you are so proud of your little boy, Devin. It sounds like Devin is a true fighter and is lucky to have you care deeply for his well-being and your support and love I’m sure is making all the difference to his experience.
Hi Mcdonnella12! It's so good to have you onboard! Thanks for writing. I'm pretty sure you will find the necessary life tips you need right now right here, including self-help guides for parents and children.
It's hard to suffer stigma, stares and unsolicited attention on oneself, but I know it feels even more challenging when all of it is aimed at our loved ones, specially our children. But there's hope and, as our colleagues said, your child is so lucky to have you.
I'm pretty sure this challenge will help you grow in love and appreciation for the treasure of having a supporting family. This is what families are all about: care, support, growth and happiness. I hope this defying experience helps you find those treasures in your own home, nurtured by the mutual love you provide for each other: that's just unbeatable!!
I hope to hear from you soon, but I'm very happy you have reached out to us!
Big hugs!!
Hi Mcdonella12, I have Cystic Hygroma so I can understand what you and Devin must be going through. It's fantastic that Devin is able to speak, eat and breathe normally. I would say, based on my own experience, it is perfectly understandable and normal for your son to be anxious and shy. This is a big thing for anyone to have to handle, particularly a child. Personally, I think you've got the right approach about this. I have always been open about it myself and explained it is something I was born with. I too have experienced people staring at me and laughing. As I've grown up I've got used to it and I hope Devin will be able to adjust too. Have you spoken to his school? They should be offering him support and the teacher should speak to the class about treating him equally. Has Devin spoken to you about what he is anxious about? I think the key is for Devin to accept and love himself, and for him to feel loved and accepted by those around him, whether at school or at home.
I have always felt that people are apprehensive about talking to me, because of my facial disfigurement. Sometimes I need to make the first move to break the ice as it were. This can tiresome and challenging, but with a lot of support it can be done. I think you're doing great and are clearly giving Devin a lot of encouragement.
There is plenty more I could say, so if you ever want to talk or ask for advice please do not hesitate to get in touch.
thanks for your kind and supportive words. I have spoken to his school but I don’t think they understand how Devin works. I am hopeful that as he grows into his identity and personality that he will figure out how to approach his condition and shyness. He might just be shy 🤷🏻♀️
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