Photo credit: Kim Brock Photography
On Tuesday evening, Jack and I were sitting at the kitchen counter… he was playing Temple Run on the iPad and I was working on the computer. Out of the blue he says, “When are my fingers going to grow?”
*sigh*
We talk about his little hand fairly regularly. It comes up when we have play dates with new friends (and old friends – kids are often fixated on it and who can blame them, it’s different). I notice the looks from other children when we are at the park. I weigh out what I should say and what I should leave up to Jack to say for himself.
“Did those kids ask about your hand? What did you tell them?”
“That God made me special!”
But still, he wonders when he’s going to grow fingers. If only it worked that way (or not). Do I wish Jack could just grow some new fingers and have a fully developed hand? Not as often as you’d think, at least not anymore. Jack’s hand is part of who he is and it’s a part of who he will be. I’ve said before that I don’t believe it’s ever going to stop him from doing something he puts his mind to, but I do wish I could erase every potential hurtful thing other people could do or say with regard to his hand.
Yesterday, Simon posted a link to Tony Memmel’s “Lucky Fin Song” and the first comment was: “Simon, do you have a child with a limb problem?”
Breathe in. Breathe out. Even the well-intentioned say things that can be hurtful. We prefer limb difference. Our culture needs to change its vocabulary when it comes to talking about people with differences. We so quickly wonder, “What’s wrong with him?” when we see a person in a wheel chair. We label people with “disabilities” as if they are without ability instead of just being differently-abled. We shy away from asking what made them how they are or getting to know someone for who they are and instead stare and whisper when we think they aren’t paying attention. We need to change.
So, back to Tuesday and Jack’s question about his hand/fingers… no matter how many times we have talked about his hand and explained that it’s the way God made him; that it’s not going to change but just grow bigger with him, like his other hand (but without fingers) he still wonders and hopes that things will be different someday. I believe this will be a conversation we have many times in his lifetime, with varying emotions coming from my spitfire of a child. So instead of explaining it again, I opted to show him all the posts on the Lucky Fin Project’s Facebook page (take a minute to go “Like” them, I’ll wait). Clicking on photo after photo of kids and adults who, like him, were born a little bit different but just how God wanted them to be. And then we watched the “Lucky Fin Song” video (see below) and Jack spent the rest of the evening singing, “Yeah, I’ve got this fin but you should see me swim…”
We should all be so lucky to have a community to turn to when we are looking for answers specific to what we are going through. I hope Jack continues to find comfort in that community and as he grows, I hope he doesn’t forget that his little hand is just one small part of what makes him special.
“There’s always a choice and it’s time to dive. And when the day is feeling long and the sky is getting dark, you have got to let your light shine. Know how great you are!”
Tony Memmel, Lucky Fin Song
Also, go like Tony Memmel.
ememby 
You’re a good mom. Jack’s a lucky and amazing kid. 🙂
I second what Keri said. You and Simon are amazing.
We should have a coffee together :).
I don’t talk about AOI’s fingers/hand as often because I don’t see that as a problem also she is just 21months so I know the day will come when she will ask me about her fingers/hand.
I know about the lucky fin project and also other communities dedicated to families with limb differences. I keep many in mind for the day AOI will ask me about her hand, I will just show her people doing things they love differently and not people with a ‘problem’ doing something.
Just like Jack she does everything and nothing is going to stop them.
As lucky fin project logo goes: Ten fingers are overrated. That’s what I want my family to remember.
Loves,
TOI
Any time you are near Michigan – we will plan a get together and perhaps we will come your direction some day! I realize that once you get past the initial shock or surprise of having a child with a limb difference, you don’t think about it until they get to the age where their peers start noticing their hand and then you have to deal with it again in a different way. Of course, it’s a frequent thing as they grow to remind them there is nothing they can’t do (but doesn’t every good parent do that) and that they are special (aren’t all children)… I just hate how our mentality is to label things that are different as something that is wrong or a problem… our words frame our thinking. Glad our kids have us (and their dads).
This is my email msbabyplan@gmail.com
I have never liked the word “disabled” because it implies that you can do nothing. Truth is, you can do everything, just with a different technique. And when there is something you really CAN’T do, there are others nearby who CAN, and it does them good to help. My mother always told me that the biggest part of the word disability is “ability”. I spend much of my time in a wheelchair these days but I routinely take ALL the blue ribbons in the county fair Knitting Competition. Jus help him find “the way he should go”. PS – it may always bug him that the fingers didn’t grow, but that will be tempered but the amazing things he CAN DO BEST!
Thanks for your words of insight… I also think that allowing someone to help you is good for the other person (and yourself for being in the frame of mind to be able to ask). Love the PS!
Thank you for posting this!! My husband teaches a whole section of celebrating differences in his marriage retreat material because God created differences to enrich the pallet of life. I also very much appreciate how you handle the questions. My children are inquisitive and ask questions. Sometimes we meet folks who will answer them and they love learning. Sometimes I get the look of “you bad parent, keep them away from me”. I want them to learn to interact with all people. But I don’t want to gloss over how hard this may be for you to deal with. Thank you for being patient with us ignorant folk 🙂
I think it’s always better to speak words that are kind and loving instead of staring and whispering… and I just pray that people receive inquiries with the same amount of grace with which they are made 🙂
I have epilepsy. I “can’t” drive, but I walk so many places and sometimes I wonder if that is the silver lining. I talk sometimes to kids with seizures, and I tell them I think our brains just gets a little more excited than most – like when they get excited and can’t sit still.
I like to think there is nothing wrong with me . . . and I am so happy to hear you are telling your wonderful son there is nothing wrong with him. Different is different, not disabled or wrong.
It’s hard to know when you are in the moment how to address things that are different, but I think if we practice the mindset that different is different and not wrong, then we are halfway there… and better prepared to field questions when they arise 🙂 Thanks for commenting!