Thursday, 7 July 2016

Word of the Week: Kindness

Since starting our family blog just over two weeks ago, I have been asking myself whether I would ever discuss Theo having Ectodermal Dysplasia (E.D). I always thought my answer would be a resounding “no”, simply because it is such a personal issue. However two things happened this week which have prompted me to share a little about the condition.

Firstly, I finished reading “Wonder” by R.J. Palacio. A brilliant and heart warming novel for children about acceptance and bullying. The central character in the story, 10 year old Auggie, has a disfiguring facial condition. The story beautifully illustrates how friendship and a little kindness can make a huge difference in a young person’s life.

Secondly, I overheard my beautiful little Theo being described as "that vampire boy” by a much older child. This made me so unbelievably sad. I was at a total loss and didn't know how to react. Theo, of course, was oblivious.

We are all different and the world would be a pretty boring place if this wasn’t the case. Hopefully sharing our story will encourage others to show a little kindness towards those whose differences are that bit more noticeable.

E.D is actually a group of conditions affecting the development and growth of the hair, skin, teeth, nails and sweat glands. In our case it is genetic. Both myself and my brothers all have the abnormal gene. The variation we have affects men more severely than women. Having done a bit of research, I would say we are extremely fortunate. The main symptom in our family is lack of teeth and malformed teeth. Some symptoms can be much more debilitating.

Growing up with E.D wasn’t particularly difficult for me. I needed orthodontic work and later on a couple of dental implants. I also overheat easily. However for my brothers, E.D was, and probably still is, a much bigger issue. They have required significant dental surgery. They suffer from a whole array of allergies, as well as asthma and eczema. I am certain they had a much tougher time growing up than I did.

Naively I didn’t consider the implications of E.D when deciding to start a family. To be honest I never thought it was much of an issue. Fortunately Izzie seems to be unaffected and, at 7 months old, it is too early to tell about Poppy.


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Theo’s diagnosis has been confirmed through genetic testing. Although there was never really any doubt he had E.D. From birth he had constant issues with reflux and failed to gain weight. His teeth were late coming through and then, shortly before his first birthday, four little teeth appeared. I was absolutely delighted that he was finally getting some teeth but, at the same time, I was devastated by their pointy appearance.

Now at age 2, he has 5 little teeth and there is the possibility he won't get anymore. He has trouble chewing food, digestive issues and eczema. But, more importantly, he is a confident and extremely energetic little boy, who loves playing with other children. My fear is that when more children (and adults) start to make these comments, all that confidence and energy will be knocked out of him. I know it is my job to make him as resilient as possible but, at this stage, I’m not really sure where to start!

To find out more about Ectodermal Dysplasia visit: www.ectodermaldysplasia.org




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36 comments:

  1. My wee boy is at the same lovely oblivious age too and I also hope I have the skills I need to keep him that happy, go lucky, lovely wee guy but also to give him the resilience. He has no teeth and X-rays say he never will. Was nice to read this, I'm also going to buy that book too, K x

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    1. It is so difficult to know how to protect them, isn't it? I am so pleased your little boy is so happy too and oblivious to it all at the moment! The book is geared for older children but I will read it to mine in a few years time. I do hope it is covered in schools as I do think it will help with attitudes as they grow up. :)

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  2. Just think about Theo's vocabulary with all these books...he'll be able to talk rings around anyone who says anything! ;-) Nic x

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  3. I love your word of the week and my heart goes out to your little boy. Children can be cruel. It would be nice though that kids are taught kindness early on, clearly yours do already, hopefully other parents will do as well. We teach out daughter kindness all the time and to be mindful of others. I'm hoping she won't ever forget that #wotw.

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    1. I'm so glad you like it and thank you for your kind words. Just like you, I hope that other parents are teaching their children a little kindness and to be mindful of the feelings of others. It really does start with positive examples at home :)

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  4. I have been meaning to message you for ages about a programme I watched on a channel called TLC about children with ED. I think it was called something like Boys on Fire. Very interesting and the children all ended up with dentures which made a huge difference to them. Lots of love to your little Theo xx

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    1. Ooh thank you. I will have a look for that. Dentures seem to be answer in the US but not so much over here. I have no idea why!

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  5. Kindness is a great word to choose to sum up your week, as little can be more powerful. It's so hard as we want to protect our kids from very hurt and insult, yet we know we can't. Equipping them to handle them and remain confident is the key, and feeling so well loved by their family, I believe. I'm sure your Theo will be OK as you have his back x Thanks for sharing with #WotW

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    1. Thank you so much for your positive comments and for hosting #wotw. I am so glad I shared this post, I did have a little wobble when I first hit publish but the response has been fantastic, so no regrets!

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  6. I know just what it's like to have a child that's a little 'different' and you're right, a little kindness goes a long way. We always make sure that there is plenty of love and understanding at home and then it helps them better deal with the outside world. x

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    1. Thank you for your comments Anne, I think you are right, hopefully if we create the right environment at home, he will be better equipped to deal with whatever happens elsewhere.

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  7. Well done Kate! A good move to make others aware, as you will do when Theo goes to nursery and you explain about what he can and can't eat etc. xx

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  8. Thank you for sharing this with #WotW and raising awareness. A number of people appear to be writing about conditions concerning their families online these days. I hope that through your blog you can find others to connect with.

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    1. Thank you Helena, I have had such a positive response so far, which has made me very pleased that I shared our story :)

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  9. I had never heard of this condition so thank you for raising my awareness. Children can be so mean :( 'Kindness' is definitely something I will be teaching my son.
    #KCACOLS

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    1. I'm so glad it is raising a little awareness Laura :) #KCACOLS

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  10. Children can really be so mean. As can adults.
    I actually have a friend who has ED, she sounds so similar to your little Theo, and she has soooo much confidence, it's amazing. I remember, when we were in school, she always had some sort of witty comeback to say to someone who had something to say. I truly think it came from her home-life. She was always told how beautiful she was, and how even though she was 'different' she really wasn't different at all. This gave her the confidence to go out into the real world alone. She's such a strong, independent adult now.
    With a mom like you, I know Theo will be just fine <3 #KCACOLS

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    1. Thank you for commenting Savannah. I am so pleased to hear a lovely success story. I'm hoping he will stay just as he is confidence wise :)

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  11. Its a fact that children can be so cruel. However, with your support and unconditional love, Theo will learn to deal with comments, im sure. A little kindness goes such a long way. #happydays

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    1. Aw thank you Carol. Children can be cruel but is mainly a lack of understanding, maybe! You are right a little kindness does go along way :)

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  12. Wonder was such an amazing and inspiring book! Definitely a great word of the week selection and being "kinder than is necessary" is such a great lesson to learn.
    #KCACOLS

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    1. Such a great book and I seemed to read it at the perfect time as well, which was bizarre!

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  13. I hadn't heard of ED before, thank you so much for sharing and raising awareness.

    Kindness and empathy are the things I really hope I manage to teach my daughter. There is just no need for meanness, especially not related to the way someone looks. My great wish is that she'll not only be kind herself, but will be confident enough to speak up when others need to be kind too. x #KCACOLS

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    1. Oh I do hope other parents take the time to teach these lessons too. It takes great courage to speak up when others need to be kind. I hope that of my children too :)

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  14. I totally love that book — I recommend it to everyone! Cheers, #KCACOLS

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    1. So many people have said this. I feel I discovered it a bit late in the day now :)

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  15. I love that your word of the week is kindness! I had never heard of E.D. and appreciate the informative post. I hope that he doesn't have to deal with kids being unkind. I think it's all about how we raise our kids and teach them to value individual differences. Thanks for sharing! #KCACOLS

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    1. Thank you for your supportive words Sarah. So pleased you liked the post :)

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  16. Children can be cruel and thoughtless but they can also be supportive and caring. I'm sure over the years you will find that there are many kids who will see past ED and see the energetic fun boy you have #KCACOLS

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    1. I do hope you are right Geraldine. Thank you for your kind :)

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  17. Thank you for introducing me to a new condition ED. I haven't heard of this before and I'm glad that I know about it now. I'm so sorry that your little one suffers of this but I'm sure he will grow up strong and confident if he has a mother like you. You will his perfect guidance. Love your word of the week; kindness. It is always a better world when we are surrounded by it. Thanks so much for sharing this at #KCACOLS. It is lovely to have you, :-) x

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    1. Thank you Franca. I'm glad to be able to spread a little awareness and so many people have been so supportive and positive. Lovely to be part of #KCACOLS Thank you for hosting!

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  18. Poor thing, children can be so cruel... For what is worth, all your kiddies look gorgeous. I am sure your little boy will be fine and if really it's an issue, surgery does wonder! #KCACOLS

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    1. Aw thank you. Yes I think surgery will be needed but much further down the line :)

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