Friday 28 February 2014

Life With Limb Differences

When Lee and I decided to adopt back in 2011, we knew we would be saying yes to a child with "special needs", a term which I found very daunting.  When our mountain of paperwork had progressed to the stage where we were ready to start reviewing files of adoptable children, we had to fill out a form that told our agency what medical needs we'd be willing to consider. 

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. 

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Saturday 15 February 2014

Six Months With Peanut

Today is February 11th – a Tuesday.  Driving home from work today, my mind wandered to mundane end of the day things.  I’d just grabbed a quick late afternoon run.  I was relaxed and happy.  I was driving along the same road I always take to go home, wondering if I should detour to the grocery to buy coffee pods or suffer with instant until the Amazon delivery.  Wondering if bread and butter with the stew I’d thawed out for dinner would be too much starch.  Wondering if my husband had picked up the kids from daycare or if I’d have to do it.  This was a day like any other. 

It didn’t occur to me until later on in the evening that today is the six-month anniversary of Peanut’s Gotcha Day.  We’ve gone through so many ups and downs on the road to the place we are now.  It was surprising – pleasantly so – that the day that marks Peanut’s six-month mark with our family was a day like any other.   
Six months ago, I was pacing around a hotel room in Jinan, China.  It was Sunday afternoon and my family and I had rolled in to Shandong Province’s capital city just shy of noon.  We’d gotten situated in our hotel room and had some lunch.  The food was good, although the tea pot full of hot water (sans tea leaves) that had been given to us as our beverage was a little different. 
About an hour after meeting Peanut

Day 2 - not very sure of each other. 
 
I remember the minutes leading up to meeting Peanut with a great clarity.  I was hot and sticky, despite the crankin' AC.  I was wearing two necklaces adorned with colorful plastic bugs…one kept breaking.  I’d set up my laptop and my mom and some of my sweet adoptive mommy friends were blowing up my Facebook wall with comments like “can’t wait to see pictures” and “let us know as soon as you get him”. 
While the rest of my family was remarkably chilled, I was anxiously staring at the phone on the desk, willing it to ring.  When it did, my heart jumped in my throat, at least that’s what it felt like.  Even though I’d been expecting to hear our guide Missy’s voice on the other line, hearing the words “I am downstairs with your boy and we are coming up” somehow caught me off guard. 
Although I can recall many details about the moments before the knock on the door that brought Peanut in to our family for keeps, the moments between then and now have been a blur, a whirlwind.  I can hardly believe that six months have passed since I sat in that hotel room in Jinan waiting on the phone to ring, in my sweaty dress with my broken bug necklace.  I’m stopping to catch my breath to give an update on how our little guy is doing. 
I won’t rehash the difficulty of our adoption trip or the rocky roads of our first month home.  If you follow my family, you know it was hard on us, unexpectedly so.  We got through it, as I always knew we would.  I am not sure if I’d go as far to say that we are the poster family for international adoption, but we’re in a good place.   
Growth & Development
Since coming home, Peanut has gained about 8 pounds and grown almost 4 inches.  He’s gone from wearing 12 month clothing (at three and a half) to a 2T, although his waistbands are a little loose.  His little arms and legs have filled out and although one could certainly not call him a chunkster, he is sporting a couple of rolls around his middle.  He seems to be gaining height versus girth right now, although he eats like a champ. 
Cheese scones with butter - we're all about carbs here 
 
After six months, Peanut’s appetite and food intake continue to surprise me.  For all his progress, he’s still a really little kid and I can’t believe what he can pack away.  For the most part, he eats whatever we give him and cleans his plate.  His favorites are any protein heavy foods – especially yogurt and eggs.  Might be his body’s way of telling him what he needs.   
As far as cognitive and motor development go, Peanut is on track for his age now.  The kid who looked at toys in “what the heck” style consternation now expertly assembles puzzles and train tracks.  He makes “dinner” in his toy kitchen and loves arts and crafts – play dough, paints, crayons, etc. 
I am happy to report Peanut is now potty trained.  Some of his medical issues can delay potty training, but he seemed interested, so I bought some underwear and decided to give it a go.  Easiest kid ever to potty train.  
School
Kyle is thriving at Children’s World nursery.  He moved up to the “Butterflies” room before Christmas.  He is a class with other kids his age and doing beautifully.  We started him out in the toddler room because he was still adjusting to so many things, but he’s caught up and then some.  His caregivers report that he’s doing awesome…the one drawback is that he is now in the same room with Zack, so those two are pretty much together 24/7.  That has good points and bad.  The teachers say both Kyle and Zack get along with other kids well but bicker with each other. 
Kyle is eager to go to school each morning and sometimes sulks on non-school days.  Being in a classroom setting has done amazing things for his adjustment and vocabulary.  He correctly identifies most colors, matches objects, counts to ten (kind of) and is starting to sing songs by himself.  He’s easy to drop off – he happily goes to the breakfast table or the play area and will only once in a blue moon cry when I leave.  He is crazy excited to see me at the end of the day and seems entirely secure. He announces to the room “my mommy here” when I show up to take him home.  He’s delightful. 
Sibling Rivalry
Peanut and Doodlebug play well together about 80 percent of the time, which I think is pretty good.  They squabble over what to watch on TV and toys, but not outside of the range of typical.  They do a lot of hands on and pretend play and cooperate very well.  The bickering comes when they actually play with toys.  I said we weren’t going to be one of those families who buys 2 of everything and the kids were going to have to suck it up and take turns.  Not so much.  We pretty much have doubles of everything now.    
First night together in Jinan....oh-so-peaceful!

Still in Jinan...one of Doodlebug's first realizations that "this other kid wants to touch my stuff". 

Feb 2014 - relatively peaceful bathtimes (there is a ton of splashing involved daily)

Christmas morning 2013

Chinese New Year 2014 - Happy Year of the Horse!

Me:  "Act like you like each other". 
 
They play separately now and then or do activities by themselves in different rooms.  They seem to sense when it’s time to take a break from each other.  Their verbal abilities are to the point where they can have conversations with each other, and that is pretty funny to listen to. 
Doodlebug:  You farted
Peanut:  No I didn't, you did
Doodlebug:  No, you.
Repeat this about ten times
Doodlebug:  Sissy MY best friend
Peanut:  No, sissy MY best friend
Doodlebug:  We all best friends
Peanut: Doodles, you my best friend
Doodlebug:  I not share my grapes
Ninety-nine percent of their squabbles occur over what to watch on TV.  If one child wants to watch Sponge Bob that will be the ever loving last thing the other one wants to see.  I solve the problems by choosing their TV programs – they’re either both happy or unhappy and it keeps things simple.  Thankfully, Peanut has branched out to watching other things besides Barney the purple dinosaur.  Everyone is happy about that. 
Language
Peanut’s English is great and most people who spend time with him can understand what he says, although his annunciation still needs some work.  His Chinese “hold out” word is “bobo” which he says when he wants to be held or picked up.  Until about 2 weeks ago, he was calling Doodles “didi” (Chinese for little brother) but he’s using his proper name.  While I’m thrilled to see his language exploding, it makes me a little sad to see how quickly he’s lost his Mandarin.  
Social & Bonding
Peanut is easy going with a side of stubborn.   He’s a pouter when things don’t go his way, but a good tickle fest can usually cause him to lose his ‘tude quickly.  He likes people and likes being out and about. He’s not hesitant to interact with strangers but he doesn’t display any inappropriate affection of familiarity with anyone outside of our close circle, which is sometimes a concern with adopted kids.   
 
We’ve made great strides with attachment and bonding over the past few months.  Although Peanut quickly accepted us as caregivers, I would not say bonding and attachment came easily for any of us.  He allowed me to meet his needs from day one and showed clear preference for his parents versus other adults.  He accepted affection and would give kisses when asked for kisses.  He’d say “I love you” before we left his room at night.  All of these things seemed very routine versus having any real emotion attached to them. 
 
It is difficult to bare the fact that we had attachment/bonding issues with Peanut.  I try never to compare any of my children to one another, but my bonding experiences with Sissy and Doodlebug vastly differ from my bonding experience with Peanut. I felt a huge rush of love when my first two kids were placed in to my arms. Even though the circumstances of how I came to parent them was completely different, the instant maternal love was identical.  Things were different with Peanut.  I'd heard about attachment struggles from the adoption support group I'd joined when we brought Doodlebug home and I used to scoff at the mommies struggling to bond.  "They must be doing something wrong", I would smugly think.  I was totally in love with my new baby and all I wanted to do was kiss his head.  I know he might not have been quite as smitten with me at that point, but I did a lot of eye rolling at mommies who reported concerns about attachment to their new kids. 
 
Bringing Peanut home was humbling.  I was suddenly one of "those moms" who was struggling.  I'd thought I'd done everything right.  I was uber prepared...heck, I was an adoption veteran.  But Peanut & me...instant love it wasn't. 
 
My biggest concern was his lack of need for comfort when upset.  He would stand and cry but wouldn’t seek me out or reach for me.  He’d usually allow me to hold him but wouldn’t lean in, cling or hug back.  Although this was worrisome for me, I kept on showing frequent and liberal affection.  While he wasn’t particularly huggy, he was usually up for sitting on my lap or next to me out the couch, so I took advantage of these opportunities to be physically close to him. 

Some might find the phrase “fake it till you make it” distasteful, but the feelings of love and the bond between Peanut and I was something that had to grow.  It wasn’t “instant love” for us.  I felt protective but our bond had to evolve.  I credit the circumstances of the trip and aftermath with some of this.  The magnitude of his actual needs compared to what his paper file said was also a contributor.  At any rate, it took a while.  And that’s okay.   

Some days were just going through the motions.  Some days were really, really hard.  Some days were golden.  We kept plodding on and I cut myself some slack.  And, eventually things fell in to place.   

At about the five month mark, I noticed things were different.  I sat down to watch TV with Peanut, at his request.  He jumped on my lap, took my arm and locked it around his body.  He held on tight, making sure that I wasn’t going to let go of him.  I had only meant to sit for a second.  I didn’t really have time to sit at all.  But on that evening, Peanut wanted me to hold him, so I did.  I sat through the “Hula Duck” episode of Ni Hao Kai Lan, which I’ve seen way more times that I ever want to.  
 
A couple of days later, I woke up at about three in the morning to find Kyle curled up against my legs.  It’s rare that we don’t wake up with a kid in our bed, but that kid is never Peanut.  Since then, he sneaks in with us about once a week.  He doesn’t seem particularly distressed or afraid…he just comes in to hang out and snuggle, which is okay.  

At six months home, Peanut will seek me out when he’s distressed or has an “owie”.  He bumped his head in our kitchen last week and my husband picked him up.  He allowed the cuddles and them hollered for “mommy” and held his arms out for me.  He definitely thinks daddy is more fun, but when he’s “in distress” or wants someone to do something for him, he is a mommy’s boy.  That is A-OK with me.  

Peanut is one of the bright spots in my day.  I absolutely can’t imagine life without.  I love him every bit as much as my other kids and the stress and doubts present during the early days of our adoption seem like such a long time ago.  Bringing Peanut in to our family was a commitment that has resulted in some rocky times…and some amazing blessings. 
Me & Peanut 2 weeks ago at a Chinese New Year party
Medical exam in China.  We had known each other 6 days. 

About an hour after meeting.  He was still wondering who the loud redhead was but he tolerated me (I had snacks).  

Medical
Peanut continues to be a pretty healthy kid.  We have some follow up blood testing to be done in March – he’s being re-screened for certain parasites and infectious disease, just as a precaution.  We are also having genetic testing done – our doctor offered it and we’re going to press forward with it (simple blood testing) to see if there is any “missing puzzle pieces” we’re able to put together about his medical history. 
On the 26th of February, Peanut is having some testing done under anesthesia.  His urinary system is going to need some reconstruction – whether that is major or minor, we’re not sure.  The testing will tell and if it’s a minor fix, they may be able to take care of it on the spot.  This will result in some short-term discomfort for our boy, who isn’t too crazy about any medical professionals in the first place. 
We’re hoping and praying that the fix will be minor.  If it isn’t, we’ll likely have to readdress this when we get to wherever we’re going in the fall of 2014.  If things look complicated, we simply don’t have enough time left in the UK to pursue anything that is going to require a great deal of follow up care.  It’s a shame because we really do like his urologist and feel comfortable with him.  It would stink to start at square one once we make the big move. 
And there you have it – six months
I blinked and six months passed by.  I think we’re past the first big hurdle and life is good.  I have no idea what the next six months hold.  Much is up in the air for our family but I am excited to see what is around the corner for us. 
On the playground, Feb '14, enjoying rare English winter sunshine...brrrrr!

My crazy crew
 
We are in contact with the staff at Peanut’s orphanage.  We exchanged email info with them at the time of adoption and they send us a note about every other month.  We send them pictures and let them know that he is okay…we have yet to really give them any info or ask questions but we’re very fortunate the door is open. 
I wasn’t sure if I wanted to open that door.  The condition Peanut was in when we adopted him causes me some angst, although I believe they did care for him and thought they were doing the best they could.  A friend reminded me that it wasn't my door.  Until Peanut is old enough to decide if he wants to open that door, I am sort of the doorstop.  Perhaps my willingness to communicate will bring answers one day.  For now, I’m content not to ask questions. 
Peanut’s extreme fear of medical personnel and dogs continue to perplex me.  I get that the poking and prodding he has to endure isn’t fun, but his reaction goes beyond what makes sense. Now that he has some language ability, he’s told me “dogs eat your face”.  He shows no signs of ever being bitten, but I kind of wonder if he saw someone bit or if someone told him this.  We happened on a lady walking some sort of poodle mix on our way home from school last week and he about climbed up my leg.  For Peanut, there is no “nice doggy”.
Peanut is a treasure, a challenge, a blessing and sometimes, a bit of a mystery.  Looking forward to so many more milestones and firsts with you, sweet boy.  I am so honored to be your mom and “saying yes” to you is something I thank God for every day.
 
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Sunday 2 February 2014

Sunday Snapshot

Two cool kids eating some Chinese cookies - another great Sunday in England. 

Saturday 1 February 2014

Jill's Top Ten Reasons to Adopt a Toddler

I used to really love David Letterman's Top Ten lists.  Yes, I know I am dating myself, but that's OK.  In reflecting on how much my life has changed since we opened our hearts and minds to bringing these two little dudes in to our family, I've put together my own Top Ten list. 

"Older child" adoption is a little hard for some people to get their heads around, I guess.  Most people can identify with infant adoption, but families who adopt toddlers and up are often a curiosity.  I've tried to capture the very best aspects of our choice...some of it is humorous, some of it is really from my heart.  So, here we go, people:

-- Because it adds a little something to  your day when someone claps for you because you went number one in the potty

-- Because experiencing an endless array of firsts through their eyes is priceless – first visit to the zoo, first ice cream cone, first grilled cheese and tomato soup, first game of Angry Birds, first train ride…the list goes on. 

-- Because it is really fun to have a “secret language” with your spouse.  Right now, we’re taking advantage of the fact that they can’t decipher the spell code we’ve got going on.  Our tots are blissfully unaware of the true meanings of c-o-o-k-i-e and
b-e-d unless we want to clue them in.  Eventually, we’ll have to switch to Pig Latin, but I think we have a few years. 

--Because sleeping past 7AM is completely over-rated.  

--Because you learn to cherish the present.  You’ll never get back the time in your child’s life before you became his/her family, but the time you didn’t get makes the time you do get all the more precious.

--Because you can watch all of the Disney cartoons you want without people judging you. 

-- Because the capacity you have for love and wonderment will amaze you. 

-- Because you will get really (really, really, really) good at doing laundry. 

-- Because adoption – any adoption – is a gift.  Most people think the lucky ones are the children.  Most parents who have adopted toddlers believe they are outrageously lucky. 

And the top ten reason to adopt a toddler is…

-- A child who could have grown up without a forever family doesn’t. 

And just because I can, here are two reasons that I have an eleventh reason for why adopting a toddler totally rocks - because yes, people...they are just that cute.