Letting you in on a secret…

Jack 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.