Category Archives: Symbrachydactyly

Letting you in on a secret…

ememby_differentawesomeJack is nervous to start school. My fearless child who never lets anything hold him back. Who counts past 800 and would keep going if I let him. My youngest who has displayed more stamina and stubbornness in his 5.5 years than I will ever hope to have in a whole lifetime. Mr. Full Throttle, Guns Blazing is nervous.

My fearfully and wonderfully made kiddo is anxious and I figured this out because a) he has been acting like a crazy cling-on child and b) he asked to wear a long-sleeved shirt when he visited his kindergarten class. As soon as he asked, my heart jumped into my throat because I knew why. Why, on a morning that was already warm and humid, my child who regularly runs around shirtless in the winter, was asking for a long-sleeved shirt. He wanted to “hide” his little hand, his lucky fin.

I have tried very hard to never ask him if he is worried or anxious about something because of or in regard to his little hand. Yes, we talk about it often but in the context of what he can do, or why other people (mostly kids) might be curious about his hand. I have never wanted to suggest to him that his hand should make him self-conscious or anxious or worried, especially if he never indicated that he felt that way about it. Sort of how we only know that the sky is blue because someone taught us the name of that particular hue, but if they had told us it was green – we would call it green until otherwise corrected, none the wiser. Clearly he knows his hand is different, but unless he tells me that the idea of it causes him worry, I wasn’t about to suggest that it should.

But now it appears that he is indeed worried. Which I sort of knew would be coming and actually his surgeon had said would probably happen when he entered school (and again in the teenage years) – that there would be some anxiety or uneasiness around that transition until kids got to know him (which can happen in minutes) or had sated their curiosity. It is 100% normal for people to wonder why he has one smaller hand. Oh, but I cringe just thinking of how that curiosity presents itself or will be phrased: “What’s wrong with your hand?” and those are the nicest alternatives… kindergarteners have a smaller vocabulary where “wrong” is rather benign when faced with options like strange, weird, gross or anything else negative (and the vocabulary will only get bigger and meaner as he grows – a future I pray for fervently; I know that bullying is not tolerated and that people take so many things in stride but stray comments and lingering stares are still bothersome to kids and as hurtful as anything overtly stated).

So when he asked for the long-sleeved shirt, I paused and then asked, “Hey buddy, are you worried about school and maybe anxious about your hand?” He asked what anxious meant and I told him it was like being nervous or not knowing what people would think or wondering if they would look at it. And he said that yes, he was anxious about it. And so I told him he could wear a long-sleeved shirt if he wanted but that people were only curious about his little hand because they didn’t have one of their own and maybe they wondered how he had one (reminding him again that I loved his little hand and that we are all different). And I asked him what he tells people when they ask about it and he repeated, “I just say, that’s how God made me. I was born that way.” And then we revisited the Lucky Fin Project’s Facebook page and I showed him pictures of the kids and adults on there who were going to school just like him and doing lots of other activities. I remembered that there was a post from Jordan at Born Just Right about her advice for kids like her going to school. So we watched the video and read her books that she gives to the kids in her class before she starts school. And once again – what a gift that community is to us! Jack didn’t change his mind about the long-sleeved shirt, but I could tell he was less anxious about it and more ready to face the day than he had been 15 minutes prior. (And after Jordan’s video, he asked to watch all the videos the Holderness family has created – they are super entertaining and we have watched them so very many times, but they have nothing to do with limb differences.)

I wish he wasn’t anxious about school in any way but I certainly wish he wasn’t anxious about his hand at the same time I also know it’s only natural for him to feel that way. Jack’s old enough to notice the stares (which quite frankly stink – it’s so much better to just ask a question rather than obviously stare) and he gets frustrated when he can’t do something the same way or as easily as his brother (like monkey bars – which can be done, it will just take perseverance which he has in spades). At his request, he and I both went and talked to his teacher together, with me guiding him to tell her what we’ve taught him to say about his hand. “I was born that way. It’s the way God made me.” And then he showed her that he can bounce balls and clap and do all the things any other kindergartener can do (this was right before he stole plastic coins out of her toy cash register). I will email her all the info I normally tell his teachers and we’ll go from there. We have prepared him the very best we could for the first day of school and I just pray that he makes a new friend or two quickly and isn’t held back by any thoughts of his little hand.

Ironically, his little hand really isn’t the first thing you notice about him. In fact, it isn’t something people always notice at all… it can take many months of seeing him before many adults take note. I think this is two-part, the first being because it truly does not hold him back – there is absolutely no “dis” in his ability, he is simply differently-abled when it comes to certain things like bike riding, monkey bags and swinging tennis rackets. And second, he does try not to draw attention to it – he certainly doesn’t introduce himself by waving his little hand in people’s faces and often tucks it behind him or up into his sleeve. On this last point, I’d love to see a change in him… I mean the kid doesn’t lack for self-confidence, so I’d love to see him more outwardly proud of that little hand – not hiding it when he’s in new situations.

It’s our job to keep building up that confidence and giving him opportunities where he meets others with limb differences or sees their accomplishments. We will keep giving him the vocabulary to talk about his hand and practice with appropriate responses to people’s inquiries. Sometimes we have to make stuff up on the fly, for example: One of the school-aged kids at daycare who both my boys are friends with so I am confident he had the best of intentions, asked Jack if he could give him a dollar to touch his hand. I get the other kid’s curiosity and frankly, one of my favorite things is feeling his little hand grasp onto my fingers because it is so unique. Jack didn’t seem bothered by this request, but since he was asking me about it, I knew he wasn’t certain it was okay for this kid to have asked. So I told him honestly, if he wanted to do that, it was okay with me that “Fred” wanted to give him a whole dollar for something as silly as touching his hand and I explained that he was probably just curious about Jack’s little hand because he didn’t have one and wondered what it was like. And then, God bless him, Liam piped up and said, “Yeah, he doesn’t have a cool little hand. I kind of like having a brother with a little hand!” Right or wrong, “Fred’s” request was not mean-spirited and what’s important is that Jack feel comfortable in these situations and how they play out. We take them as they come and figure it out along the way – which is pretty much the sum of parenting. No matter how many kids you have, they are all different – all with their own individual set of worries and differences – we need to love them and build them up so they can thrive and succeed. Our job is to make sure they know they are awesome – just the way God made them. Because the one thing we have in common is that we are all different.

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Scenes from a life lived (limb) differently

Happy Tuesday, folks – hope the week is treating you well now that we have survived the Polar Vortex and the Arctic Blast – I’m just waiting for the Blizzard Apocalypse to strike. For family and friends out of the country, the weather reports have been a great source of entertainment lately – we are all amused by the drama cold weather brings. It’s like it’s surprising that winter has come yet again, like it does EVERY year.

The following is a series of things that have been on my mind and I just want to gather them all in one place. They are all related to Jack and his little hand (more on that here). I hope that someday he can read this and realize that while his little hand is a “thing” it’s not the only thing about him, it’s just another part of who he is and what helps make him the amazing person he is – but it’s also something I’ve put a lot of thought into to figure out how to shape his view and thinking with regard to it and how he lives his life.

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Jack has started a new habit when he is asking for something and I have already turned him down once, he puts his hands together like he is saying a prayer and pleads, “Pretty please.” The first time he did this, I had to stop myself from automatically saying “yes” because this little gesture was punctuated by the difference in his hands. That little hand stops me in my tracks sometimes and I have to remind myself that he gets no favors because of it and I do him no favors if I baby him or allow for different rules because of it. It’s not tough love, it’s just love. And the hope he won’t use the hand has an excuse for not doing something or has a means to garner sympathy.

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I’ve also discovered that he’s caught on that he can use his little hand as a reason others aren’t nice to him – he made up a story that some boys at daycare told him his little hand was stupid which instantly made my big, bad momma bear come out but after further questioning and checking with his teacher, I discovered he likely made it up because it seems he has a flair for the dramatic and likes playing the victim. I’m onto his tactics and have related the story of the boy who cries wolf, while reminding him that if someone does make fun of him for his hand, a) it’s not okay, b) what they say is untrue and c) they aren’t worth being friends with – but he should still be nice to them.

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A friend had a baby recently and the first time we visited her, Jack checked her hands to see if she had two big ones or one little one like him. This would have given me pause if it wasn’t for the fact we had just seen a bunch of children younger than Jack at a Lucky Fin Project gathering who all had limb differences like him. My friend admitted that his checking made her heart hurt, but it made me smile because for once he didn’t just assume he was the only “different” one in the room. That’s why the Lucky Fin Project is awesome – it raises awareness about limb differences and celebrates them – bringing us together online and in person.

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A couple weeks ago, as we were pulling out of the driveway, Jack asked, “When I go to heaven, will I have two big hands?” THAT, that made my heart hurt. I responded with, “I don’t know buddy, but I bet you’ll have whatever hands you want in heaven.” I pray that someday he’ll be content with the hands he’s got and not be wishing for something different. But I pray the same thing for Liam and all the people I love, that they will be content with who God made them to be and not go after being something they are not.

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This math question was in Liam’s homework packet last week:

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Can you imagine why I might have a problem with it considering one of my children only has six fingers? The lovely assumption that 10 fingers for each person is a given. The possibility that this question will be included in Jack’s homework packet when he is in second grade?

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This article ran in the Sunday paper and was given to me by our very well-intentioned daycare teacher who perhaps realized I might be offended but was nice enough to think of us when she read it. I have no qualms about the story, but I wish the reporter had taken a little time to talk about all the things the little girl can do with her limb difference (which, incidentally, is a whole category of “conditions” but not a specific condition itself… it appears the girl has symbrachydachtyly like Jack, NOT a condition called “Limb Differences” as reported in the article). The article also reported that the girl was born without a hand which is just untrue, she appears to have been born without a fully developed right hand; in the pictures she does have a hand that is missing digits. The Robohands, while very cool (and the whole high schoolers building it aspect is also pretty amazing), does not seem necessary in this case and I feel like the articles makes it sound that way – like the Robohand is helping her overcome this horrible thing when in actuality, it is NOT a horrible thing or a deficit. I hope the little girl in the article and her mother realize that her limitations are not about questions of “can she or can’t she do something” but instead are opportunities to figure out how to do something differently. I don’t expect Jack to tie his shoes the same way that Liam does, but I expect that we’ll figure out a way for him to do it. And he can squeeze the toothpaste out just fine. Thankyouverymuch.

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As I’ve talked about before, the thing we tell Jack to tell others when they ask about his hand is: “This is just how God made me.” That his little hand is what makes him special… which of course, in brotherly competition, leads Liam to ask, “What makes me special?” And rather than highlight all the things about him that make him who he is, we stick with the story of his belly button which then leads to picking one thing about all the people we know and talking about what their special thing is, because we are all unique, physically, mentally, spiritually and socially (for the record, my special things are my longer-than-my-big toes second, third and fourth toes and Simon’s is that his uvula is split in two [the hangy-downy thingie in the back of your throat]). No other person is exactly like us, though we may share common qualities, God made us all special. Not better or worse than any another person but special. Individual. Each with our own set of characteristics. Our own set of problems and our own set of joys. The one thing we universally have in common is that we are all different.

Second verse, same as the first

BrockBday-007Photo 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.

Dear Boy Who Turns Four

Though you’ve rather loved being “free and free-quarters” I’m going to guess you’ll love being four even more – despite the fact that we’ve told you that four is the age when you will have to start taking “no thank you” bites of foods you don’t like (trust me, I don’t look forward to the gagging and dry heaving that will follow those bites any more than you do but you cannot should not survive life on a diet of Vegamite sandwiches, all manner of processed chicken in nugget and pattie form, applesauce, crust-less waffles, candy and yogurt). Three has been a *ahem* challenge… but that is because God made you strong-willed (which is good) and made your parents just as stubborn (which is probably good, too, since I don’t see you giving us any breaks as you get older).

For some reason, this year more than others, I’m amazed that this little alien baby: Alien_baby

Turned into this amazing kid:

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And this cherub child:

B100ebwHas grown into this fun-loving boy:
IMG_8608-2And also equal parts this one:
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You love picking Liam up from school…
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and donuts (especially from Sandy’s Donuts)
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and being a boy
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This year, you have kept us entertained…
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You lost your first tooth
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You met Jim Abbott who I hope will someday be one of your heroes.
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You were much loved by your family (even Liam who often pretends that you aren’t his best friend).
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I love your sweet face.
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And your silly one.IMG_6171
And your up to no good one, as well.
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You are one of my most favorite things and one of the two best things I ever made.
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Happy Birthday, Jackers… Love Mom (and Dad – who agrees with everything I wrote, though he would have preferred you not take all the stuffing out of the couch cushion)

Found lacking? I don’t think so.

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Source: etsy.com

I have been tossing this topic around in my head for the last couple weeks or so. Since Jack “graduated” from having to go back to the orthopedic surgeon for any future checkups, we really haven’t had any issues or incidents with his hand. Not to say I don’t notice when others stare at it – both children and adults and a natural reaction, one I have had myself – or that we haven’t talked with people about it (something I absolutely don’t mind doing because education and pride are the two things we can do to open other people’s minds about limb differences), but nothing out of the ordinary. But at some point in December, both Liam and Jack expressed a desire for Jack to have two big hands. Liam said it first and thankfully Jack did not overhear him saying it to me. And then we were in the checkout at the grocery store when Jack said it to me. It cuts right through my heart to hear either of them say something like that, but especially Jack because despite all the times we tell him he is special and that God made him that way and that his little hand is no different from how God made other people different, he has measured himself by the standards of others and found himself lacking, wanting more. It does not surprise me that those feelings are there, but it still breaks my heart.

Both occasions were random occurrences, we hadn’t been talking about Jack’s little hand or hadn’t witnessed Jack having difficulty doing something because of his little hand, they were just out of the blue comments like kids often make. In Liam’s case, I asked him why he thought that – he responded because most people had two big hands. And I matter-of-factually reiterated that God made Jack that way and that while it was true that most people had two big hands, there were plenty of people who had other differences that made them stand out like being very tall or very short, or having to wear glasses or hearing aids, or not having legs, etc… And then I reminded him that Jack would be able to do almost anything with his two hands as they were, just like Jim Abbott who we had met during the summer. Oh yeah, he said, I guess I just wish it was different. I gently told him that I hoped he never said that to Jack because it might hurt his feelings.

In Jack’s case, I simply reminded him that God didn’t make him that way and that instead he chose to make him special with a lucky fin, or a lucky little hand. And then I told him that I love his little hand and that he is going to do anything he wants to in life. And then I smiled broadly at him and at the man behind us in line who was intently listening to our conversation because I will not miss the opportunity to make sure Jack knows that I think he is awesome and to make sure that other people know as well. But, goodness, it’s not easy navigating these waters.

And then yesterday, on the way home from daycare, Jack was doing his usual routine of how no one plays with him at daycare… which, for the record, he says all the time and his teachers assure me that he is the ringleader of their activities – something I have witnessed myself when he doesn’t know I am watching – but I still feel myself getting all mama bear in those moments, thinking of the possibility of those other four-year-olds hurting my kid’s feelings. But this time, he said, “They didn’t want to play with me because of my hand.” Gulp. Who knows if this true, or a perception that Jack has, or just something he has made up because he knows it will get a reaction out of me. Whatever the reason, I think there is something I need to do here, but I am not sure what. What would you do if you were in my shoes? A letter to the other parents explaining Jack’s limb difference and giving them some talking points for their own kids to help educate them about how it is not anything wrong with him or a reason to not be his friend? Suggest a class viewing of Finding Nemo and prompt the teachers to talk about how Nemo didn’t let his smaller fin hold him back and that he helped make him awesome, just like Jack? At the very least, I’ll be talking to his teachers and getting their thoughts/observations. But this is just the tip of proverbial iceberg, as these occurrences will happen more often as he grows up and is in school full time, and he will become more aware of his difference and the attention it draws from other people.

So do me a favor, if you are a parent, please talk to your kids about differences in people and how they should react to and treat someone with a difference, which is: NO DIFFERENT THAN HOW THEY WOULD TREAT ANYONE ELSE. Explain to them that all people are different in one way or another. Prompt them to think about how they would feel if someone didn’t want to be their friend because they have curly hair or freckles, or perhaps were missing part of their hand. Reiterate that some differences can be a challenge for the person, but that the possibilities are limitless. Look up videos and articles on the Internet about people who have limb differences so your kids can see how awesome they are: Tony Memmel, Jim Abbott, Nick Newell, Kevin Laue, Kevin Connolly, Oscar Pistorius, are just a few. And if your kids (or you) have questions about Jack’s hand, ask them, because it’s natural to be curious and we don’t mind. Plus I want to make sure that Jack grows up talking about his hand and not hiding it his sleeve or ever being ashamed of it. I never want him to find himself lacking, but instead to be assured that God has given him more than enough to succeed in life.