Category Archives: Symbrachydactyly

In comparison

Because of Jack’s hand we have really driven home the thought that God made him that way and that God made him special. How much so was really highlighted recently when Liam sadly said from the backseat, “I wish I had a special hand like Jack. What makes me special?” He’s not yet at the age where he sees Jack’s hand has a hindrance or a bad thing (and hopefully he never does) because we have always pointed out the positive associated with it, the specialness. But his statement/question put me in the position of having to figure out what to say to him to make him feel better. To console my sweet six-year-old because he was sad to not have his own “lucky fin.” Can’t say that I ever saw that coming.

I couldn’t say, “Really, you should be happy that you don’t have a small hand like your brother because you won’t have to deal with figuring out different ways to do things, or how to field questions about your hand and stares from strangers (and sometimes friends).” Liam is oblivious to the aspect of Jack’s hand that are not enjoyable, instead, he was focused on wanting that specialness, on it not being fair that his brother has this special thing that he doesn’t have (oh my goodness, no one warns you how much of parenting is soothing hurt feelings and making sure your kids think everything is even). And I (perhaps) forgot that Liam also needs those extra assurances that he is also special, that God made him special, because we make such a big deal out of Jack’s hand. But in this case, he was not comforted by my simply saying that God made him special, too, because He makes everyone special; he pushed me to tell him specifically, what about him physically made him special. I had a God-given moment of genius when I pointed out his belly button, which was different since birth and is now even more different since his little surgery earlier this year and how that was something special about him in how God made him. Thankfully that was enough and he was happy with that assurance, proudly telling his brother, “God made me special, too, because of my belly button.” [Yes, I laughed.]

I have been thinking about that a lot since it happened. Knowing that as they grow, we’ll have to balance how much we talk about Jack being special with also saying the same thing about Liam. Liam needs the same assurances from us as Jack, both boys need to know they are loved and special to us and to God. But I am also struck by Liam latching onto something that most people would see as a negative and by comparison he is left feeling like he is the one missing out [which I think means we have been successful in presenting it as (at the very least) no big deal].

I’ve also been thinking about how, without fail, comparison of ourselves to others will always leave us lacking; feeling inadequate in some way, or like we are missing out. Looking at another person and thinking, “Oh, I wish I had her house/her wardrobe/her body” or “Wow, her kids are listening to her/her husband is so sweet to her/her friends are so wonderful… I wish my kids/husband/friends were more like that” that is the devil right there in your head, telling you that God made a mistake, that you aren’t good enough, that the person you are looking at [and judging] is better than you and that He didn’t make you special. And that is a lie. God doesn’t make mistakes and no one’s life is perfect or more worthy of goodness. We will always feel like we lose out when we put ourselves up for comparison because we see what we want to see, what the other person wants people to see but we seldom see the full story. We don’t know the other person’s pain or struggles; how they are also comparing themselves to their sister/brother/co-worker/stranger at the store and feeling like they don’t measure up. We need to give it up, stop comparing ourselves to others and letting it take the happiness out of our lives. No matter who you are, God made you special.

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Graduation Day!

I completely forgot to add this to my weekend list of randoms, but it is so much more worthy of its own post. We had a post-op visit with our orthopedic surgeon last week and were thrilled to find out that Jack never has to go back and see him again, his first graduation of sorts! Since Jack’s surgery in November of 2010, we’ve gone back to our doctor for regular checkups (a doctor I was amused to learn, is very interested in hand injuries from the Civil and World Wars and has written books and articles on the subject), not knowing if this would be our last or not. Each time we’ve gone, we did x-rays and the doctor checked out his hand and said everything looked great, no surprises. This time was no different and we were pleased to learn it would be our last and unless Jack ever needed a special orthotic for his hand (say if he were interested in playing baseball or golf on a very competitive level) or injured his hand in some way and needed it checked out by a specialist.

I briefly mentioned Jack’s surgery in my post about Liam’s belly button surgery, but I thought it might be helpful to someone else if I recounted in more detail the operation we opted to have for Jack because of his symbrachydachtyly on his left hand.

Shortly after Jack was born, we were referred to a hand specialist for a consultation to learn more about Jack’s hand and what options we might have in the future. Prior to this meeting we’d already figured out that it was called symbrachydachtyly and that it is found in 1 in 30,000 births and starts around 5-6 weeks gestation, for an unknown reason – it is inexplicable and there was nothing we did to cause it and nothing we could have done to prevent it.

Our doctor was impressed that we knew what it was called (we are Google professionals) and we were impressed that he said all the right things regarding it not being the fault of anything we (I, as his mom) did and that we would find there was truly nothing he wouldn’t be able to do. We quickly determined that we weren’t there for consolation but rather to learn what we could do to improve things with his hand since growing a complete one wasn’t an option.

Jack’s thumb had the end bone (at the tip, under his nail) but no middle bone to attach it to his hand. He also has the first bone in his pinky, but no actual finger around it. Having these two things gives him an opposable grip. His other fingers were actually what the doctor referred to as nubbins, little “bubbles” of skin without bone that were attached to the end of his hand without much base (like a skin tag), though they did have tiny little finger nails on them.

There were a couple options, one of which was a complete toe-to-hand transplant, which is better-suited for people who didn’t have any digits on their hand and another which was called deepening where they cut into the bone on his hand and create a deeper “v” between the thumb and pinky to give him better grip. They could also lengthen one or two of the bones in his hand using a long process and contraption that would slowly stretch/grow the bones out – very painful and again, more beneficial for someone without an existing grip or digits. The final option he described appealed to us most and was the one I think we knew we would go with from the beginning, included a less invasive bone transplant (not a whole digit transplant). Because of the missing bone in his thumb, Jack’s thumb did not have stability to give him a tight grip. He could pick things up with his hand, but if you applied any pressure, he would drop whatever he was holding. Our doctor explained that we could take a bone from one of his toes and insert it into the place of he missing bone and stabilize his thumb, this would give him the best chance at having a tighter grip – bingo! He did note that it would not increase mobility, in other words, it wouldn’t bend like a regular finger at the upper knuckle. Once we decided on the surgical route, we just had to wait until Jack was at the right age to do the surgery (post-crawling and frequent falling down) but prior to school when the surgery would be more disruptive.

At 21 months old, he was ready for surgery. During the surgery we also opted to have his nubbins removed as they were (for lack of a better word) useless. They did get in the way of his grip (since they scrunched up between his thumb and his pinky when he closed his hand) and to be very honest, the doctor said that aesthetically, people noticed the nubbins more than the smaller hand and were often more accepting of a scar with no fingers than a hand with nubbins. Take away from that what you will, we don’t regret having them removed because ultimately, they could have caused more problems by leaving them (ingrown finger nails, getting snagged on things, etc…)

The day of surgery came and we got checked into the hospital with a slightly cranky nearly-two-year-old who hadn’t been able to eat that morning (this was in the days where he at all of the things, prior to his current picky food eating ways). He really had no idea what was in store for him and you can’t explain something like that to someone his age so we just prayed that all went smoothly and that he would not be scared at any point.

We went to pediatric pre-op where my friend Stef’s husband (an orthopedic surgical resident at the hospital) found us and said hi – we had hoped he could sit in on the surgery, but it didn’t work out. They gave us some sleepy meds for Jack to take – not surprisingly he did not fall asleep (unlike the other child who was also there waiting) so the anesthesiologist came and got him and ended up carrying him back to surgery while he waved groggily at us, leaving us there in the waiting room (I will tell you that was almost the hardest moment in this whole process, but God did protect our hearts and give us peace that we were doing the right thing).

Once the surgery was done, we got to go to recovery and see Jack, who had woken up and was very out of sorts but he calmed right down in my arms and cuddled for the longest he has ever cuddled in his life (apparently he just needs pain meds and surgery to want to be held for more than 10 minutes; also, a tooth being knocked out does the trick as well – I will happily avoid both as long as I can, despite my love of cuddles).

After a couple hours of recovery, we were sent home and Jack was eating and back to his normal, happy self that afternoon. Albeit, his self with a large, tube cast from mid-upper arm, past his finger tips (hand casts usually wrap around a thumb to stay in place so Jack’s had to go a ways past his elbow to ensure that it would stay on). He also got a handy “sock” to cover the end of his cast so he didn’t pull out the stuffing around his hand.

We “enjoyed” the cast for six weeks, letting Jack live in the two borrowed-from-his-brother sweatshirts that would fit over his cast and didn’t look huge on his little body. A plastic cast cover and packing tape were enlisted for his very infrequent baths (I laugh when I think of how we must have looked during that time frame, one particular Meijer trip he looked quite fetching with his cast, dirty shirt that he’d spilled orange pop on just before we left, a face smeared with chocolate from the free cookie from the bakery and some serious bed head from a lack of baths. Alas, this is why I don’t judge people at the store.) But otherwise, it was business as usual, not at all bothered by the large plastic mass on his left arm. His toe, where they harvested the bone, was a little more bothersome but only until the stitches dissolved (I will spare you a picture of that because it wasn’t too pretty as you’d imagine when they remove a bone from the middle of a toe).

After six weeks, Jack got upgraded to a custom, velcro-on brace which was much smaller and stream-lined. I should note, the cast removal was by far my least favorite part of this whole thing, followed closely by getting the brace itself made. This was mostly because Jack was terrified of the saw used to remove the cast, his thumb hurt (as could be expected) and by the time the therapist had to look at his hand for the brace (and then have me immobilize his arm while they got it fitted) he was done with it ALL. It was the most fun. Or not.

Since his 3-month post-op check we have returned to the doctor every six months just to make sure everything was moving along as planned. The growth plate from the bone that was moved to his thumb remains open which means it will continue to grow at the same rate as his hand and be proportionate with the rest of his body. His toe has a tendency to bruise when he runs around with bare feet, but this is normal as there is not a bone to stabilize the end of his toe to his foot. And that toe will always be shorter than the rest, but will grow with his feet (meaning it won’t stay two-year-old sized forever). At our final visit, our doctor had Jack squeeze his finger with his little hand and was very impressed with the strength of his grip, saying it was better than he would have hoped going into surgery as you just don’t know the final outcome when you are doing that type of surgery. I felt a whole lot of mama pride at that moment, so proud of my kid for having that surprisingly strong grip, but also knowing God gets all the glory for how things turn out.

Other than a faint scar on the top of his thumb, you’d never know Jack has had surgery on his hand. And really, you’d almost never notice his little hand. As if I needed more proof of this, the night before his doctor’s visit, Jack used BOTH hands to do a full pull up on one of the arms of our elliptical – I see some monkey bars in his future. Do you have any doubt? Because I absolutely do not.

The doctor mentioned that the only hardships we could expect to face with this would [likely] come as he starts school and kids are aware of his hand and ask questions and then in his teen years when all teens are struggling to just fit in and not be different or really stand out. I think that Jack’s perfectly suited to handle both this situations with a personality that you can’t help but love and a confidence you can’t help but admire.

That’s our story, or at least one chapter, because I have a feeling the story is going to get better and better. Just you wait.

Play the hand you’re dealt


As noted in my Instagram post, we got to meet Jim Abbott last week. I have mentioned him before in this post about Jack and his hand and I’ve talked about Jack’s hand other times. If you haven’t read those posts, it might be helpful as a frame of reference.

We heard about Jim Abbott’s book (Imperfect: An Improbable Life) and that he was going to be at our local bookstore via the Lucky Fin Project (go like them on Facebook, I’ll wait) and I knew we needed to go – despite the fact that the event started at bedtime. How many planned chances will we have to introduce Jack to someone like him with a limb difference, but especially someone who has had so much success (as State fans, we’ll forgive the playing for Michigan in favor of celebrating the 1993 no-hitter for the Yankees).

It was also a big treat for Liam to meet Jim, as he is starting to understand what Jack’s little hand means along with starting to champion his brother. If ever I point out something regarding Jack’s hand, Liam will say (without skipping a beat), “I like Jack’s little hand.” But if ever he doubts his brother, we can remind him of the cool baseball player he met who has a hand like Jack’s.

While we were waiting, we met another couple who has an 11-week old little boy whose hand looks just like Jack’s. We got to tell them about the Lucky Fin Project and I gave them my contact information in case they ever wanted to talk about what it is like having a child with a limb difference (spoiler alert: it’s no different than having any other child – you have worries, you hope people like them and they get into all sorts of trouble). That in itself was such a gift, just to know that I could offer some consolation or peace of mind to someone else in the same position as me.

Standing there, I was talking to Jack about his hand and saying how neat it was that we were getting to meet a grown up with a hand like his and Jack said, “Because God made me special. And God made Jim Abbott special. And God made the baby [who we had just met] special. Because we all have little hands.” Be still my heart. Talk about proving the point that our kids do listen to the things we tell them and that we need to reinforce the positive messages because those are the ones that matter in those moments. [It should also be noted that while were waiting, Liam rather loudly commented on someone else’s weight so clearly we have things to work on. We are far from perfect parents.]

Jim could not have been more genuine and just truly nice. Nice is often an under-appreciated word but there is no better word to describe him, he spent time talking to Jack and telling all of us that nothing would hold him back (which we know full well). He looked me in the eyes while he was speaking with us and you could see that he gets what it means to parent someone like himself. I would love to talk with his mother and get some pointers. Because while nothing will hold Jack back, it’s still my job (and Simon’s) to make sure he believes that and approaches life with confidence and courage. And just because nothing should hold him back, it doesn’t mean that no one will try to hold him back, thinking that his lack of a fully-developed hand means he can’t do X or Y. It simply means he’ll have to do some things differently, sometimes working harder and having to prove himself a little bit more than others.

Jim noted that his second grade teacher taught him how to tie his shoes – figuring out a way to do it with just one hand – and this is the way he still ties his shoes to this day. I pray for people like that in Jack’s life, people who will help him navigate the difficulties and teach him important lessons. Jim also mentioned in his book that classrooms were often where he felt most awkward or conspicuous because those were the places where the most questions would come up. And as he mentions in the video below, his parents taught him just to introduce himself and not hold back, to not be shy simply because of the hand he was dealt (pun intended).

Below is a video from CBS Sunday Morning on Jim’s life and career (and hand). Please watch it – but warning, like me, you might cry – especially at the end but it is so worth watching, unless you have no interest in being inspired.

I watch that and I can’t help but think about how his mother must have felt when he pitched the no-hitter, not because he doesn’t have a right hand but because every mother wants one of those amazing moments for their child – I want one for Liam as much as I want one for Jack. A moment where there is no place in the world you’d rather be and everyone is cheering you on. Not having a right hand certainly makes the moment sweeter, but as Jim notes in the interview, he didn’t think at all about his hand that day, it was about baseball, being a part of the Yankees and living his dream. If I doubt that Jack will pitch a no-hitter, it has nothing to do with his hand or thinking that it isn’t possible but more to do with the fact that he’s more likely to play soccer or rugby because those are sports that Simon is into. If he does take an interest in baseball, I know that the possibilities are endless – Jim Abbott proves that and Jack would have an amazing person to look up to. A perfectly imperfect person just like him who he got a chance to meet (despite whether or not he remembers it).

The same but different

I’ve been doing a little experiment for the past ten days because I started noticing a subtle difference in my boys and I’m not sure if it’s indicative of their ages or their personalities or both (spoiler: I’m leaning towards both, with a heavy emphasis on their personalities).

During my last Costco outing I purchased a large box of fruit leathers, or fruit strips as my boys call them. Copying my friend, Tracey, I’ve taken them out of the box and put them in a cup in our cupboard so when the boys want one, I grab a handful from the cup and fan them out in front of them like a deck of cards, letting them pick which flavor they want.

Without fail, when I stick one out further than the rest, Liam will always pick that one, no matter what the flavor. Jack, on the other hand, will always choose his own, never picking the one that is stuck out closest to him. And I’m not sure why exactly this is, if Liam’s just at an age where he’s more suggestable and prone to “peer” pressure and Jack’s still working on his independence OR if it is purely indicative of their personalities. I think it’s a little of both, but more personality-driven than anything. Both my boys are certainly stubborn (have NO idea where they get that from) but Liam has always been one who can be steered in a certain direction as long as he doesn’t realize that he’s being manipulated. Jack will always go his own way and has never taken redirection, he’s stubborn through and through, enough for five more children.

I’ve been thinking about that, trying to figure out what this might mean for them as they go through life. Liam has a good head on his shoulders but I worry that he won’t be able to discern when someone doesn’t have his best interests in mind and he will end up doing things because others are doing them, not realizing until it is too late that he’s doing the wrong thing or has made a bad decision. He does not stew over questions and will quickly answer, “I don’t know” if asked a question he doesn’t readily know the answer to; of course he has to stop talking first in order to hear the question being asked. He’s our little social butterfly who loves to explain things to others and soaks up information like a sponge, able to repeat whole books and tidbits of information that he’s gleaned from our reading books to him and his Tag Reader. He’s slightly easier to parent because he will be redirected and usually makes the choice you want him to if you guide him in that direction. Jack goes his own way, rarely one to bow to pressure from those around him, even when they are doing the right thing. I’ve already mentioned in earlier posts that I think his personality is key to helping him deal with his limb difference later in life. But I think it’s also going to make it hard to him to realize when he’s wrong and be able to admit it. But I’m glad he’s decisive and knows what he wants, when he wants it, I don’t feel like I’ll ever have to worry about him bowing to peer pressure, instead I’ll have to make sure he’s setting a good example for others and leading the way down the right path.

Just goes to show you, two boys with the same parents can be completely different, if even in a small way that makes a huge impact on both of their lives.

Just handy…

Below is an art project they did at Jack’s daycare – paint the kids’ hands and make two handprints so the eight fingers make eight legs for spiders. Jack’s spider is just like him, short a few digits. I had mixed feelings when I saw this project. I obviously don’t want them to not do projects like this because of Jack’s hand and I love that we have these unique art pieces and at the same time I’m reminded of the everyday things that will come up that will point out Jack’s limb difference. And despite how things could be so much worse for him (because this really will never hold him back at all – at least not physically), I still hate that he has this particular thing in his life, because again, we want the easiest path possible for our kids.

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I’ve talked about Jack’s hand before and I want to reiterate I’m not ever sad and don’t sit around thinking about what he can’t do because I truly believe his possibilities are limitless. But I do want to talk about a few things that have been on my mind and heart with regard to his hand that the art project sort of brought to the surface.

A couple of weeks ago Liam was playing with a Mexican Small Drum, similar to the one pictured below, the kind where you spin the handle back and forth between your hands so the balls on the end of the strings hit the drum to make a rhythmic sound. After Liam was done with it, Jack picked it up and tried it out but couldn’t do it at first. He looked at me and said (in Jack speak), “I can’t do it, I need another hand.” As you can imagine, I felt the wind leave my sails. That was the first time he’d ever really acknowledged that his left hand was different from the right one. I immediately recovered and said, “No, you can do it, let me show you.” And I put it back in his hands and twisted it back and forth using the base of his little hand against the handle and it worked just great.

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Source: monstermarketplace.com

I was relating this story to friends and one of them asked, “Did it make you cry?” And it didn’t make me cry – I’m sure it could if I thought about it too much – but it was similar to what happened right after Jack was born. We had no idea when I was pregnant that his left hand was any different from his right hand so when he was born and the doctor laid him on me and we saw his hand for the first time there was a fleeting moment where I thought (and said aloud), “What is wrong with his hand?” And I truly hate, hate, hate that that will forever be my first thought when seeing my second-born, but it was. Immediately, my wonderful doctor quickly and calmly dismissed it and said something along the lines of, “Oh, he’s all right, that happens sometimes – it might have been an umbilical band [it wasn’t] – but he’s just fine.” And he was just fine and perfect. I will forever be grateful to her for that moment of assurance and peace because it has set my mind and my heart on track every moment since then. And I didn’t cry then, so how could I cry over these other moments – it’s all in how we react in the moment that will help set the tone for Jack, to teach him that, though he is different, it’s no big deal and he can’t let it get him down.

Another friend and I were talking about this and she asked if I thought Jack was sad about his hand. And the easy answer is not yet but I’m sure he will probably be frustrated by it in the future, and yes, sad. So we take the moments that come now and set the stage for the future, teaching him how to react until it is second nature. I hope we are teaching him to not hold himself back, to challenge himself when he’s faced with possible limitations. It’s just like with both boys, how we have always reacted neutrally when they have fallen down and don’t make a big deal out of these falls and it has taught them to brush the little spills off and to pop right back up, unphased (something that never ceases to amaze others who see it); this is what we are showing to Jack, when he thinks he can’t do something, he can try a different way and see if that works and if he feels sad about his hand, he can buck up and remember that everyone is different in one way or another. So far, so good. Though I should note that I do want to be careful that we aren’t dismissing valid feelings, because his hand will likely make him feel a whole variety of things that we will have to cope with and he needs to know that it’s also okay to have those feelings – but not to dwell on those that aren’t helpful.

And this has absolutely nothing to do with the above, but it’s just a cute story that happened with Jack. Often when the boys say, “I want [something].” I respond with, “Well, I want a million dollars. We don’t always get what we want.” This happened today when Jack asked to watch TV and a few minutes later he walked over to me and put his hands in mine and said, “Here’s a million dollars… can’t I watch TV now?” [I totally turned on the television.]