I had never heard of some of these conditions - Thalassemia Beta. Ichthyosis. I shook my head at the fact that some of these "special needs" were listed as such - port wine stains a special need? Really? At the other end of the spectrum, there were some needs that seemed pretty involved to me, things I knew that we were not equipped (or willing) to raise our hand for.
One of the conditions listed on this sheet was "limb differences". Not being sure what exactly that meant, I used good old Google to look it up. This is what I learned:
The term, Limb Differences, is used in reference to the congenital (something a person is born with) absence or malformation of limbs. Some limb differences may be acquired as the result of an injury or disease that requires amputation. The causes of congenital Limb Differences are frequently unknown.
This, I think we could handle, I thought, so I ticked the box next to "limb differences". A few weeks later, found ourselves reviewing a file of a seventeen month old boy whose special need was listed as a "congenital hand abnormality". It is hard to believe that was over two years ago.
What is life with a limb difference child like? For the most part, exactly the same as life with any child would be like. Although Zack is essentially missing his hand (he has a small stub and four finger 'nubbins') phrases such as "get down from there" and "stop grabbing that" are part of my everyday conversations with Zack.
Essentially one handed, Zack can climb a ladder, catch a ball, open a container of yogurt...he can certainly put the smack down on his brother and grab toys away from Kyle and dangle them just out of his reach. I absolutely do not look at Zack as my "one handed child". I have never used the term "handicapped" to describe him.
Life with a limb difference child is limitless. Children who are born with limb differences don't know any different - they've grown up adapting and sometimes overcoming any physical limitations that they're born with. The biggest challenge Zack has faced so far was learning to pull up his underpants, which he's just about mastered.
Things like buttoning and tying are going to present extra challenges. He's going to have to be pretty tenacious if he decides he wants to play certain musical instruments, although I have zero doubts that Zack is capable of whatever he chooses to do.
The hardest thing for me as Zack's mom is observing people's reaction to the appearance of his hand and fielding ignorant questions. The reaction of other children is all over the place. Some children are curious. They want to look, and they want to know what happened. Most young children seem to be concerned that his hand is hurting. They worriedly ask "what's the matter with his hand" but seem to take my explanation of "nothing is the matter, this is the way God made him" at face value and press on.
Occasionally, we'll encounter someone rude or ignorant. A little boy of about seven or eight screamed "oh my God, oh my God, oh my God, did you SEE that kid's hand" at a decibel rate that could probably be heard in the next county. An adult female on the bus who looked at Zack's hand and said quite audibly "how gross" to her husband. The cashier at Wal-Mart who asked "oh darlin' what happened to his poor little hand" (and, although it is clearly congenital, I found it hard to get angry at her).
As Zack's mom, it is hard to sit back, be chill and not give these people the verbal smack down. But, I do just that. The militant mom inside me who jumps to her child's defense each time someone says something potentially adversarial is just itching to come out. But, harsh words for well-meaning but maybe ignorant people are not going to help my dear little boy deal with a world of people who are going to take notice in various ways that his anatomy is a little different. He is going to have to learn his own way of handling these comments and questions, even the ugly ones.
As much as I want life to be easy for him, as much as I want him to be "like everyone else", he stands out. I don't think his limb difference is the first thing most people notice about him, but eventually, most people notice. Reactions are different. They're all over the place. They run the gamut between no reaction at all to friendly curiosity to disgust and jeering. Although I haven't seen anyone make fun of him yet, I'm willing to bet that most people wouldn't be willing to go there with me around...and I won't always be around to police people's comments.
So, what is the "cure" or "fix" for limb differences? In most cases, there isn't a fix. It is something that just is, something you live with. We've seen an Air Force plastic surgeon and a pediatric hand specialist here in England. One of Zack's "nubbins" on his little hand was removed - it was a long piece of skin with no bone that wasn't functional and an accident waiting to happen.
The hand surgeon gave us all sort of options, one being to do nothing. One suggestion was a prosthesis that would allow Zack to "grasp" small objects, like a hook. This would be something he'd have to wear over his shoulder and control with electrical impulses. Another option was to have a hand transplant, which would give Zack a "normal" looking and possibly functional hand. The drawback to doing this is that we'd introduce a whole host of immunology issues to a very healthy child. Another option was to wear a cosmetic prosthesis. This last idea was given as an option for when Zack is older and self conscious about looking different. These prostheses are scary real looking and feeling (we saw samples) and are semi functional. They have bendable steel fingers that can be used to carry things.
With the specialist's recommendation, we opted to do nothing for now, being open to the prosthesis at a later time. We are leaving most of the decisions in Zack's court for when he's older. He has recently started to vocalize about the fact that his hands "don't match". We've always been very open about how his hand is different. Special. Just as good. We've all watched Finding Nemo and sometimes refer to his "little hand" as his "lucky fin" (which is how I explain his limb difference to young children). I think Nemo is more relatable that Captain Hook...just sayin'.
Here are a few pictures you should look at before you tell me that my kid is limited or think about feeling sorry for him - even just a little bit.
Pro Ping Pong Player
MLB Player & Olympian
Girl on Reality Show (yeah...not so much)
Badass UFC Fighter
I will leave you with this one thought - and all things considered, I am a pretty peaceful, non-physically aggressive person - if Zack were to "throat punch" anyone with his "lucky fin", I'll make an educated guess and say it would smart. He's caught me in a few "delicate places" when we've been horsing around and it's a nasty little jab that brings tears to the eyes of a grown woman. Keep in mind, my little treasure is only three. So I'm just sayin'...if someone at some future point decides to poke fun at him for having a "little hand", he might decide to show you what kind of fire power a "lucky fin" packs.
Be kind to your fellow man and appreciate diversity, people.
I've wrestled with the fact that a birth family gave up this gem of a boy because of a little limb difference for almost three years. I am so fortunate and so blessed to parent this little fireball who makes me laugh, shake my head, lose my temper, and turn to mush in the space of a thirty-second time span. I truly hope his birth family has found some peace in their decision. I will be forever grateful that they chose life for this little guy because mine is ever so much more interesting because he's in it.
If you have liked reading this post, "Like" me on Facebook: https://www.facebook.com/welcometojillvillepeople
0 comments:
Post a Comment