What it’s like to be a limb difference mom

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When my husband and I first considered China adoption we were told we’d wait roughly six years for a child. It seemed our journey was over before it started, but our adoption agency suggested the special needs program (shorter wait). I had two things to say about that:

Hell and no.

I was intimidated by “special needs.” Special needs were something you handled if those were the cards you were dealt. You know, the whole “God doesn’t give you anything you can’t handle” party line. I knew there were people who raised their hands to parent special needs kids…I didn’t think we were those people. But, before we ran screaming from the room, we took the time to learn what we were turning down.

The conditions listed under the umbrella of China special needs adoption program range from pretty much nothing, like a missing thumb to more complex conditions, like Spina Bifida. Families choose what medical needs they were comfortable parenting. We did research, took deep breaths and jumped in the deep end of special needs adoption.

It’s hard to get our heads around the fact that certain cultures classify minor imperfections as special needs. I don’t say that to spark a discussion on how lousy the Chinese are for this line of thinking, because I don’t see it like that. I tell you because it might change your thinking about whether a special needs adoption fits your family.

Early in our “paper pregnancy” we got a list of different needs and conditions. We had to check boxes to indicate if we’d be open to certain issues. Listed was “limb differences.” Having no clue what that meant I summoned my private physician, Dr. Google. I learned:

…congenital (born with) absence or malformation of limbs. May result from injury or disease requiring amputation. The causes of congenital limb differences are frequently unknown…

I thought “we could handle that” and checked the box. A few weeks later, I was staring at a picture of a seventeen month-old boy whose special need was “congenital hand abnormality.” I fell hard for this kid in the picture.

And here I am. So, what’s life with a limb difference kid like?

My son is four now. He’s missing his right hand (he has a stub and four finger nubs). “Get down!” and “don’t touch!” fly out of my mouth about sixty-trillion times a day. No different from any other mom of a small terror I mean boy, hmm?

He can climb a ladder, catch a ball, and open anything he’s generally not supposed to have. He can put the smack down on his brother, snatch toys from other kids and dangle them enticingly out of reach till the other kid cries (I’m so proud). He most recently got in trouble for swiping my Kindle, slathering it with body lotion and pretending it was a baby. I have used many adjectives to describe my boy terror (some have four letters). Handicapped was never one of those words.

My son is growing up adapting his environment to his anatomy. Buttons and shoelaces are challenging, but he’s mastered pushups at the tender age of four. I have zero doubts that my little fireball will conquer he sets his sights on.

The hardest thing about parenting a limb difference kid is managing my reactions to people’s stares or comments. Kids are curious. They want to look, ask “why” or want to know if “it’s an owie” (most adults can figure out it’s a congenital thing). Kids take my explanation of: “this is how he’s made” at face value and press on scaling the jungle gym or trying to take back whatever toy my little grabber just swiped from them (sigh, we’re working on that).

Occasionally, we’ll get rude or ignorant. A boy of about seven screamed “OMG did you SEE that kid’s hand” at a volume probably heard in the next county. A woman on the bus acted as if she’d seen Sasquatch and remarked audibly “how gross” to no one in particular. It’s hard to be chill and not give these people the verbal smack down (or trip them and pretend it’s an accident). Even though my instinct is to rush to my kid’s defense when someone says something tacky, I don’t do it. If I police every dumb comment, my little boy won’t learn his way in a world where people are sometimes just assholes.

People are going to notice his anatomy is a little different. He’ll have to learn his own way of handling comments, especially ugly ones. We all want life to be easy for our kids and sometimes it’s hard to see him standing out when he’d rather fit in. My son’s limb difference isn’t always the first thing people notice, but eventually, they notice. Reactions range from no reaction at all to friendly curiosity. Mean has been a rarity. I haven’t seen anyone tease him yet, but I’m sure that day will come, probably when I’m not there to witness it (kids are sneaky like that, ya know).

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There is no “cure” for limb differences. Maybe someday there will be technology to grow a hand in a lab but we’re not there yet. I can’t name one thing he can’t do that would be enhanced by a prosthesis so we’re holding off until he’s older to decide on that. A cosmetic semi-functional “slip on hand” that looks and feels real (in kind of a scary way) will be an option when he’s bigger. We are leaving the decisions in his court.

He refers to his little hand as…well, his little hand. Right now, he’s happy to show you if you want to look. “It’s just my little hand” he’ll tell you and then moves on to telling you he likes your pretty dress and asking if you have candy in your purse. He’s kind of a player like that.

We sometimes call it his “lucky fin” like Nemo. This is how I sometimes explain his limb differences to children. I’m happy Disney came up with a more relatable limb difference role model because otherwise, we’d be stuck with Captain Hook and everyone thinks he’s sort of a douche.

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46 Comments

  1. I can’t believe what that woman on the bus said. I probably would have been in shock and then I don’t know if my shock would have silenced me or made me blow up. I’m constantly feeling on the defensive for my kids. I never know where to say something or where to shut my mouth.

    I had a similar experience as yours when looking at the special needs list. I just thought -I don’t even know how to be a parent, how would I parent a child with a special need? But now we have three born with cleft lip/palate.

    Also, I have a friend who has a son adopted from China – he’s missing an arm. He can tie his shoes. Go figure.

    1. I was pretty shocked, too. She was a very pretty lady and she just instantly turned ugly for me. The shoe tying doesn’t surprise me. We’re not there yet, but I would be surprised if he’s not able to manage that.

  2. This is such a lovely post! Our youngest daughter was born with Treacher Collins Syndrome and one of the characteristics is no outer ears. She has “baby ears” that look like the little ear lobe and she is deaf. She loves her baby ears and doesn’t want prosthetics (she’s 10yrs old).
    We have had the comments and stares but never limit her, whatever she wants to do or try she’s encourage to.
    I love your attitude! hang in there and keep encouraging your little guy to reach for the stars!!!

  3. You know, Jill, I love the way you write. Just wanted that out there. I can understand kids reactions to a point. Kids are kids and kids are curious. The adult woman on the bus? How DID you manage that one? Asshole. It sounds to me like your little guy has a ton of confidence and acceptance and that comes from his parents. He’s a lucky kid.

    1. Thank you – that’s so nice of you to say.

      I just gave her a “Jill special” bitch look. It didn’t seem to phase her. I came pretty close to tripping her with my foot. Like really, really close. There was an angel on my shoulder or something stopping me.

  4. Hats off to you! You took on something/someone that you could have turned your back on. My husband and I have talked about adopting, and with a special needs child of our own, we have thought about looking into special need adoption. He is one blessed little boy!
    Found you on Mommy Moments Link Up
    http://musingsofamommabear.blogspot.com

  5. Your son is so precious and I adore this love story. I admire your courage to admit that it was a struggle for you to take on a special needs adoption and how just trusting and learning brought this miracle into your life. I am sorry that you have to deal with situations like on that bus, but you are blessed beyond that and more. I feel sad for that woman.

  6. He is adorable!!!! What an eye opening post! Thanks for sharing your honest, humble experience. I do think about adopting or even fostering a child, however, I decided to wait for my biological children to be out of the house, in college, maybe with a family of their own before I take that final step. Thanks for sharing!

  7. What a cutie! I think little kids do fine with this sort of thing. The mom of a girl at my daughter’s old preschool had a similar limb difference, and of course kids asked her about it because they were curious, but she just explained that she was born this way, and it didn’t keep her from doing what she wanted to do even though she looked different from most people. But adults and kids old enough to know better? You’re a better person than I am to keep your temper in those situations. Hopefully as we keep modeling better behavior to the little ones, they’ll grow up with some empathy. Thanks so much for sharing your story.

  8. I can’t believe how stupid and insensitive some people can be! I understand curious children, but adults should know better. I like how you handle things and how “normal” your family seems. Again, sorry if that’s an insult! 😉

  9. AW!!! I can totally see why you fell in love with him, Jill (Kirsten? Which one do you prefer? Always wondered!!! lol). I just did too…

    Sigh… what an ADORABLE little guy!!! And oh, how I just love your perspective and I am SO glad you shared it with us all. GO MOM!!! You picked perfectly.

  10. I have 2 Chinese daughters with limb differences, upper and lower. My girls each wear a prosthetic leg, and one has a “xiao hand” on a shorter arm, while the other has finger differences on both hands. Clothing is one of our biggest issues, (my older girl’s prosthetic knee absolutely *shreds* pants) and even that is not as big a deal as many other special needs.

    Your son is adorable! 🙂

  11. Oh, I love this!! He is beautiful and it sounds like he is smart and full of spunk as well!! I’m so glad you have such a positive attitude and are obviously teaching him that different doesn’t have to be a bad thing. My son was born with microtia and we had no idea what that was. We never made a difference between him and his siblings, never treated him as if he was anything other than a normal kid (which he is), and always told him that everyone has something about them that is different. I’m happy to say he is 18 and he is just an all-around great guy! I even wrote a blog post about it. (http://thatonemom.com/this-is-what-beautiful-looks-like-a-microtia-story/) I know how it feels when people are jerks, but don’t let them get to you. They may not have limb differences, but I’m convinced people like that have brain abnormalities…it’s probably much smaller than it needs to be to really function!!

  12. GOSH, people are sooo rude! Usually, when I hear a kid talking like that I KNOW it’s the parents’ fault. Some – many parents don’t teach their kids about diversity. And I can’t believe a grown up could use the word “gross” for a little boy! Their attitude was gross!!!!

  13. Wow. We DO have a lot in common. I hadn’t read about your special needs issues before but OMG I want to punch that woman on the bus in her face (not really because I’m very passive and nice but I would like to educate her on how we’re so much all more the same than not). My son is five, and doesn’t really know know (I mean he knows but can’t really say so yet) how he’s different. His biggest challenge is speech and well other stuff but speech. He recently met a friend on the playground in a wheelchair and was so cool about it – he just said that he wanted to play ball on the ground because he didn’t think *boy name* could go up to the slide to throw it from there. Kids are awesome. It’s the grownups that are dicks. Oh and the kids who said “oh gross” they’re dicks too but they can be taught. I mean for real, kids are so accepting… I hate though that he had to hear “oh gross” sigh… and I LOVE this post.

  14. I really enjoyed the post. We had a limb challenged child on our daughter’s t-ball team. He is talented and caring. He also performed magic for the talent show. Your son is so cute. I am glad you were able to adopt him!

    Thanks for sharing your story.

  15. I grew up with a limb different kid. He has now become a talented guitarist. 🙂 I’ll see if I can find some of his YouTube videos for you. You’re an amazing mom to open you’re heart to the idea of special needs.

  16. He is beautiful! I want to eat him up, holy cow.

    (I have a son with a short leg and “little foot”, so we get it.)

    1. I think she was just an asshole, really. I was kind of tempted to trip her and I was really proud of myself for refraining.

  17. Love this post. Your son is adorable, and sounds amazing. I think he could get into a lot of trouble with my boys. I had no idea about special needs adoption or what it could include. Lots of great information.

  18. It’s beautiful that you took the chance and chose a child outside of what was once within your comfort level. And every child is different. Some on the outside, some on the inside but all deserve love and happiness.

  19. Your son was totally meant for you!! He sounds so sweet and his hand doesn’t slow him down at all. I love he has Nemo now instead of Hook 😉 Sounds like you both have such a blessed life. You are right not to freak every time someone says something to him. He will learn some people are just a-holes. That is life!

  20. I loved every last word of this. A member of my extended family has a “limb difference” and can pick up on even the subtlest of stares (I realize how oxymoronic that sounds). The momma bear in me would certainly try to stand loud and proud in defense of my child, but you’re right to stand back and let your son face the ignorance or difficulty in whatever way it may present itself. Your Hook quote was almost more than I could handle, lol!!!

  21. My 16 year old son has a friend that has a “limb difference” much like your son. They are all in theater and music and he gets a LOT of help from the ladies with his costume! My son says he’s a “chick magnet”. He wouldn’t have it any other way! 😉 It is the heart of the man, and he is an awesome one!

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