Saturday, October 29, 2011

"What's wrong with her?"

Yesterday, I took the girls down to the park. The weather is perfect for it these days, it's starting to cool down but not too cold yet. The girls love it - Lana loves running around and really doesn't need much supervision these days, and Maddy loves to scoot around on her bottom - I'm sure she's going to wear a hole in the bottom of her clothes!! And her AFOs are getting quite disgusting, even though they are only a month old. 

Lots of kids from our apartment complex spend their afternoons there, and they all get to know each other by name and play together. There is one little boy who is Maddy's age (and twice her size) - and he has a big brother who is six. 
Yesterday, Maddy was playing with her little friend when I heard the brother asking his caregiver:

"What's wrong with her? What happened to her arms? Why are they so small?" 

I have to admit, it stung a bit. It's the first time that I've heard anyone asking these questions out loud. I know there was no malice, only a child-like curiosity, but I still don't know exactly what to do in these circumstances. I also know that we will have many of these kinds of questions and we need to learn how to answer them.

In this case, I figured that the questions were not aimed at me so I didn't say anything at all. I know that we will see these kids over and over throughout the winter when we go to the park instead of the swimming pool - so maybe I should satisfy his curiosity with an age-appropriate honest answer, much like I gave Lana when she made similar observations? But on the other hand, I don't feel like we necessarily owe everyone an explanation either, particularly if they aren't even asking us in the first place.

It's so hard to know the appropriate response... I'd love to know your thoughts, so please comment with your opinions :)


  1. That's a good question. You're right the child was only curious, but to avoid an answer makes it seem like something is wrong. When it isn't. Maddy is a miracle every single day she lives. Tell them that. God made her special. Everyone has challenges, but some are not as easy to see. Remind them that everyone is different - and the same. You have a unique opportunity to teach about grace. Maddy may appear different physically and she may need extra help with some things, but isn't that why God made stronger people around her to help? We can't be givers if no one needs us. In return, Maddy gives courage and inspiration just by overcoming the challenges of her day with confidence. God didn't make a mistake with Maddy. He gave a specific gift to the world when He made her. Just like He does with every person He gives life to. Finding that gift is the parent's challenge and joy. Thank you for sharing your beautiful girls with us!

  2. We have "taught" those around us that dwarfism isn't really different then having brown hair or blue eyes. Some people are very surprised by our quick response that our son is a dwarf or a little person (I use dwarf much more because the whole little person thing became almost comical - yeah I can see he is little . . . ) Anyhow, the kids that are friends with my older children all know our sons has dwarfism. I agree with the idea that if I am silent then I am someway embarrassed.

    We also mention something else fabulous about him. Like your Maddy, I always think of her smile. So I would say she has a rare form of dwarfism but isn't her smile the most beautiful thing in the whole world.

    Does it hurt - yes . . . but that makes us good moms. Our son is now 5 and the hurt is so much less. I still hurt when I realize that he can't do something his friends do. THat he will have challenges, but I also see the positive. He has friends. One little boy came up to me yesterday at scholl and said "B is the coolest kid in our class?" Really, how many nights did I spend worrying that he would not have a single friend in school.

    Blessings, we love Maddy

  3. Hi Nicole! Loved the videos you posted! So adorable! Anyway to comment on your latest blog I want to say I haven't had that type of situation yet because Lyla is only one year old and when we are out and about people usually think she is a baby and don't even realize she was born with Achondroplasia. The only thing I can say is to trust your judgement and if you feel you need to say something then say it. If not, then don't. I am a teacher here on Long Island, NY and because it was a child who was making those comments I probably would've picked Lyla up and said.....Hello! This is Lyla and the reason she has short arms is because her bones don't grow like yours. However, she can do a lot of things you can do! She is just little that's all. Next time your here at the park I hope you come over and say hello........and then I would've continued to play with my daughters. I only would've said this to this child because you stated you live in a complex and you might see this kid again and i wouldn't want to keep hearing the same questions. But that's me. Everyone is different and every situation is different! Trust your gut and you will be fine! Maddie is an ANGEL! Xoxo

  4. I have the type of children who would ask that kind of question. And you are right, it is pure curiosity and a desire to know how the world fits together.
    As a mother, I try to encourage them to engage with the person (or person's mother) rather than to direct the questions to me, as I probably would give the wrong kind of answer or distort things as I couldn't possibly know the truth or reality of the situation.

    The last time this happened was at Sandy bay when the athletes were training for the paralympics. I asked my son to ask the athlete in question, and he and his trainer were very happy to answer all the questions - mainly directed towards how the special athletics wheelchair operated.

    I think it is important that you have some ready answers for various aged children that's appropriate for them and respectful to you and your family.

    The biggest thing to fear is ignorance as it leads to more prejudice and misconception. Once an interested child has the right answers they will become a spokesperson for you even when you are not there. When their friends and classmates and contemporaries say inappropriate or wrong things they will speak up for you.
    If you're in a complex with many children, it's great to have some allies amongst the young.

    It will also show Maddy and Lana that there is nothing to be ashamed of and that it's a non-emotional medical fact that can be explained.

    That's just my personal opinion on the matter. Hope it can be of some help.

  5. Hello Nicole - thank you for sharing your situation and the question. The playground can be at times more challenging than we all realize. I don't have any good advice like the other guys who've left you a comment. However, I just wanted to share that I really enjoy reading your blog about Maddie, and the responses from your readers. I find that it helps me too - especially if I will ever be the parent of the child who ask those questions, or if I have faced with the same situation myself. Thank you. Jack. ps - say hi to Berny for me.