Thursday, February 28, 2013

FAQ's Regarding Zeke's Hands

From strangers, acquaintances, and friends, we do occasionally get questions about Zeke's hands.  For those of you too shy or polite to ask, here are some of the more common questions and the answers.

1.  Why are his hands like that?  (Mostly asked by elementary aged children.)
Zeke was born with his hands that way.  It is not from an accident and it doesn't hurt.  We still do not have an official diagnosis other than congenital birth defect but I'm still holding onto my belief that the technical term is symbrachydactyly .  It is not something that is inherited nor can he pass it on to his children and there are a lot of unknowns regarding why it actually happens.

2.  What kinds of things can he do with his hands?  (Usually this question actually comes out more like "How does he eat? or another similar question.)
Honestly, this kid does whatever he wants.  He came to us knowing how to use silverware, chopsticks, and writing utensils.  (I am sad to say we have not used chopsticks very much and when I gave him some the other day, he struggled.)  He can drink from an open cup, catch a ball, open our patio door and put together simple wooden puzzles.  We took a break from being potty trained when he first came home but after Christmas, went back to underwear.  With that development, he decided he wanted to dress and undress himself.  So he can take off all of his clothes by himself and can put on underwear, pants, socks, and shirts.  (Pretty much by himself, depending on the piece of clothing.)  He can unzip zippers as well as any other two year old.  Two things that are impossible right now for him are pants with zippers and opening doors.  Pants with zippers have an open front and so he can't pull them up like he can pants with all over elastic waists.  Door knobs require the ability to grip and turn which he can't do.  When he is taller, he will be able to use both hands to do that but right now he is too short.  The reality is he is very adaptive and innovative.  He just figures out a way on his own.  Right now, some of his favorite words are "Do it!" which of course really means "I do it!"

3.  Will he use a prosthetic?
Generally speaking, most people whose upper limbs are affected by limb differences do not choose to use prosthetics.  Many people feel it is cumbersome and that they would rather just make do with what they have rather than add something else into the mix.  For those with lower limb differences, prosthetics are more commonly used.  There are assistive devices that he may or may not choose to use.  For example, he might choose to have something added to the handlebars of his bike since one arm is shorter than the other.  There are people who spend their careers designing special equipment that enables people with unique bodies to be able to do things like play the violin, ride bikes, drive cars, etc. and there is a chance that at some point, one or more devices like that might be helpful to him.

4.   Can they do anything to fix his hands?
"Fix" is a relative term.  His hands are always going to be unique.  However, they may or may not be able to give him more function.  We will be visiting Shriner's Hospital in Minneapolis in May to meet with a hand specialist.  After an initial consultation with an orthopedic specialist at our local children's hospital, we were referred to Shriners.  The specialist we did see thought there might be the possibility that they could create a pincher type grasp on his hand that is missing the fingers.  That hand is actually a wrist with a portion of his palm so there is more to work with than what you might assume.  However, we have no idea of the pros and cons of doing a surgery to create a pincher grasp.  We will just wait until our appointment in May and go from there.

Last, I thought I'd share a picture of his hands.  Kids especially are really curious about what how his hands look..  Grown ups are usually too nice to let on that they are curious.

His left hand has a full thumb and a portion of the pointer finger.  The middle finger on that hand is more of a nubbin but does have some bone in it.  He also has 2 small nubbins that don't appear to have any bone in them.  His right hand has a functional wrist and portion of a palm.  At the end of the palm portion are more boneless nubbins.  He actually does have the "start" of 5 individual fingers on that hand if you look closely.  One thought has been that they might be able to deepen the space between his thumb and the other "fingers" on this hand and create more of a functional thumb on this hand.

Tuesday, February 26, 2013

How Not To Put Away Your Laundry

Don't know why it's posting sideways; anyway, this was Conleigh around 5:00 tonight.

Other how nots from the day:

How not to end your bathtime:  by taking your freshly lotioned bum and sitting on a very hairy, shedding dog

How not to remain germ free:  by using the dog's squeaky toy as your own personal chew toy

Monday, February 25, 2013

Surprise? Miracle? Pregnancy After Adoption

"Oh, I bet you were surprised!"

"What a miracle!"  

I know those phrases don't seem like much but with this pregnancy, I was really hoping I wouldn't hear those things too much.  Mostly I was hoping not to hear the last one.

To some degree, both carry this connotation that our first three adoptions were perhaps a result of an inability to have our "own" children and I think that this is the preconceived idea many have about adoptive families.  Let me say though that for us, this was not exactly how we came to adoption.  (And I am in no way dismissing those families who came to adoption because of infertility or other issues that make having biological children complicated.  Their stories are authentic and valuable.  Our story is just different, not better, just different.)

 I came to adoption because I believed it was the right way for me to start a family.  (Said as a single person.)  After spending several week as an 18 year old in Romanian orphanages, less than a decade after communism fell, I simply could not know what I knew and not make a choice to adopt.  I shared that belief with D before we were married and he was on board with that choice.    Sometimes that belief has been misconstrued by others as an attempt to save the world or to "help" kids but it is more than that.  It's a deeply held belief that says "Every child deserves a family.  I desire to be a parent and it seems like common sense to be a parent to a child who needs a family."  Love, reigned in by an understanding of the practical side of adoption, has been the motivation.

So words that indicate that perhaps adoption was a last resort or a second best attempt to form a family just sit badly with me.  (And I think for families who have experienced infertility, etc., who maybe even did only consider adoption because of that, would still say the same thing.  That yes, they had to consider another option, one they might not have considered but in no way is it second best.)  Mostly, I just don't want things like that said around my children.

The implication that my pregnancy is a miracle negates the other ways I have seen God at work in my life.  Yes, it true that we did not have biological children and that there might have been an aspect of infertility at some point (after Kenson came home) but the reality is, we really didn't care nor did we take any time to try to discern if there was an issue.  And yes, I think most people consider any pregnancy a miracle.  I would just hope a pregnancy following an adoption would not seem more miraculous.

The reality is my other children were birthed to birth moms in miraculous ways and then birthed again into an adoptive family in yet another miraculous way.  I have two children who are from a country where the infant mortality rate is over 7% and where almost 9% of the children do not live past the age of 5, where treatable things like cholera, malaria, respiratory illnesses, and diarrhea are often deadly, where malnutrition contributes to death.  I have another child who was born in a poor province of China but who is considered disabled by most of the world because of his hands.  His future in China (and many other countries) would probably be that of an adult who was unable to work at an honest job, not because his disability really hampered him but because social stigma would prevent anyone from hiring him.  Add in a crazy plan that somehow transplanted them into our family and I can't help but feel a deep sense of how God-sized the task of adoption is.  I don't, for a moment, want any of my children to feel "less than" or "plan b."

No judgement if you've said those words to me or someone else.  (Really, I have been blessed by so many simple "congratulations!" and not the words I am writing about today.)  Just a call to consider how your words might sound to the itty bitty ears of children who are listening or to the heart of a mom who values all of her kids and their "birth" stories.

Friday, February 22, 2013

Cheerleading, Pregnancy and Other Assorted Funnies Via Conleigh

Some funny words we've heard lately...

Conleigh, while carrying in my purse, told me how heavy it was but that it was okay, she would just "stick it up."  (Can you tell her dad is a soccer coach who has told our children that they need to suck it up?"

Upon telling the kids that I was going to have a baby, Conleigh grabbed her forehead and started shaking her head, saying repeatedly, "I just don't believe this."

There is so much to learn about pregnancy and how babies live before being born.  So much.  Last night Conleigh is talking about the baby and wants to know if there is a cord that connects the baby to me so it can get food.  When I told her yes, she quickly told me to say "ahh" so she could see it.

And last, Conleigh attended a cheerleading day camp a week or so ago.  Somewhere along the road she has learned some "interesting" cheers including "Rock.  The Mullet.  Rock, rock, the mullet!" and "Gigolo!  Gigolo!  Show us how you gigolo!  Put your hands up high, put your hands down low, that's the way we gigolo!"  (I did try to convince her it was "wigg a lo" but she would not believe me.)

Thursday, February 21, 2013

Snow Days

Snow days.... the mixed blessing of having my husband home all day but dealing with all three children and the consequent fall out like...

-a bathtub filled with an inch of shower gel bubbles and two soapy children

-a snack of Valentine's treats that ended with a bowl full of Goldfish crackers, a few conversation hearts, a sprinkling of Pop Rocks and a splash of milk  (wouldn't have been so bad except it was a case of the bigger children ruining the littlest's crackers)

And yes, it's not yet noon.  =)

Sunday, February 17, 2013

A Surprise for You Plus My Valentine's Day Post for my Valentine

For those of you who don't know me in real life, I recently surprised and confused all of my friends with this picture.

If you are lost and wondering why on earth someone would post a picture of a bun in an oven, know you are not alone.  Several of my friends said it took them a bit to catch on.

We are expecting a baby.  (Surprise!)

To answer a few of the questions:  we're due August 30 and I feel craptastic most of the time.  

So far this isn't sounding like a Valentine's Day post, is it?  Here's the lovey dovey part:

As I've said, these last few months have not been very easy for me.  I have felt pretty crummy most days.  (Nauseaous all day long pretty much every day, some days of puking and gagging, just a lot of days where I really haven't made it off the couch.)  I have watched a lot of tv.  More than I can ever remember.  It has just been not very fun.

Emotionally, feeling sick gets old very quickly.  No one likes waking up every morning and wondering how the day will go, if you will be able to eat, if you will get anything accomplished for the day.  And no one likes feeling like they are not pulling their weight, like the rest of the family is getting the shaft while you lie around.

But at the end of January, after three really rough days, I found myself recognizing how this time has given my husband a chance to shine.  Normally, I find it easy to make jokes about how if I were to die, no one in my house would have clean clothes, be able to eat off of clean dishes, or eat anything other than frozen pizza.  But somehow, despite D having soccer conditioning and usually not getting home until 5:30, he has managed to keep things around here moving.  No, he normally doesn't pack lunches or do laundry.  And yes, he had to ask me what buttons to push to start the dishwasher.  But while I have been down and out, he has been shining.   Lunch boxes sent to school not just with PB sandwiches and oranges but with little notes from Papa, saying I love you.  Grocery shopping with coupons.  Doing bedtime for 3 littles by himself with no complaining.  My weakness giving him a chance to step in and step out of his comfort zone and succeed in ways I would not have necessarily anticipated.  So for my dear husband who I treasure much, thank you for who you are.  And for my part, may I remember and not make jokes about how my death would mean my children would be using both the inside and outside of their underwear due to no clean clothes.

(Of course, this is late.  Going back to the sickness bit, I have not really felt like blogging so it's been a bit sparse around here.  Plus, I had computer issues with some nasty old virus/Trojan/something or other so my computer was being fixed on Valentine's Day.)

Thursday, February 7, 2013

Not Bubble Gum and Frogs...

"Boys are found everywhere... on top of, underneath, inside of, climbing on, swinging from, running around, or jumping to. A boy is truth with dirt on its face, beauty with a cut on its finger, wisdom with bubble gum in its hair, and the hope of the future with a frog in its pocket."

Author: Alan Marshall Beck
Dot stickers are great time maybe they'll get on the paper, especially since they hurt when you take the off of your face.

Mama made banana bread.  Then she gave me flour and cinnamon and let me play!  Time for a new shirt!

Tuesday, February 5, 2013

God and Me-He Who is Not Offended

It's been awhile since I've posted anything that seems spiritually deep.  Probably because while I believe God is always at work on my heart, I've been wading in the shallow waters a bit in terms of discipleship.  After being pretty hit or miss with Dallas Willard's Renovation of the Heart and AW Tozer's The Pursuit of God, I have spent the last few weeks reading Mark Batterson's Praying Circles Around Your Kids.  It's an easy short read and reaffirmed a lot of the ways I pray for my kids.

I also enjoyed that he covered unanswered prayer.  I think one of the biggest downfalls of the church is that we do not teach people how to deal with unaswered prayer, heartache, and disappointment with God.  The church loves to claim the Bible stories full of miraculous healing.  But the reality is the Bible is full of plenty of stories of people who did not get the miraculous healing.  And I think there are a lot of people, believers and non believers, who find the clean scrubbed, Pollyanna version of the Bible hard to swallow. 

The tipping point is when we equate God's presence with His action.  We create if-then scenerios where "if God is active in my life, then He will shower me with blessings that look like this."  Situations where we say"if God is good, then this is what will my life will look like."  Even if we never audibly say such things, I think it is just part of our humanness that wants to qualify God's presence by defining His action in our lives.  But it all hits the fan when something unexpected or tragic happens and we are left with one end of the if-then slipping and sliding right through our hands.  What those situations are really about is God not acting in a way that we think is very God like.

In the Praying Circles book, Mark Batterson points to the story of John the Baptist as one that can teach us about unanswered prayers and the questions that kind of flit around in our hearts as we wonder exactly what God is up to.  John the Baptist was Jesus' cousin.  He had some type of deep connection to Jesus because as infants in the womb, Jesus jumped when He was in the presence of John and John's mother.  John started his public ministry before Jesus, preparing the way for Jesus by reminding the Jewish people about the promised Messiah who would come to forgive their sins.  John dedicated his entire life to this message, forsaking good clothes and good food to do so.  And John baptized Jesus, allowing the Heavenly Father to annoint Jesus in a very public way.  But John also had the audacity to call out the current Roman ruler, Herod, who was engaging in sin.  And such words resulted in him being imprisoned and ultimately beheaded. 

John, friend, cousin, and ministry companion of Jesus?  Beheaded?  Imprisoned?  Not rescued by God?  Hmm....

In Matthew 11:1-6, John has been imprisoned.  His followers seek out Jesus, sent by John himself.  They ask Jesus "Are you the one Who has come or should we expect someone else?"  In other words,  they (and probably John) have set in their minds an expectation for whom the Messiah will be, for how this deliverer will act.  And Jesus is not meeting those expectations.  Jesus is not rescuing John. 

The Bible does not tell us that Jesus even visited John.  (It does tell us that when Jesus receives word of John's death, he sent his disciples to bury the body and then he personally retreated, seeking out solitude despite the crowds who had been following Him.)  I can't help but wonder if the lack of a visit must have been a deep wound to John's heart. 

What Jesus tells John's friends is a bit of an odd piece of Scripture.  "Blessed is anyone who does not stumble on account of me."  Some translations phrase it "Blessed is he who is not offended by me."  But the crux of Jesus' words are this:  blessed is he who is not discouraged when I don't meet his expectations. 

It's about faith despite a perceived failure of God.  It's about steadfastness when you feel unsteady.  It's about belief when you have to reexamine your beliefs regarding Who God is.  Blessed is he who is not offended...

Monday, February 4, 2013

Conleigh is Six!

Conleigh celebrated birthday number 6 yesterday.  We had candles at breakfast and a butterfly art print for her room since she has been missing the garden mural in her old room which had butterflies on it.  She wants to have a friend over which I haven't quite planned yet.  D brought her her own flowers on Saturday and on Sunday, she sat with friends at church and then told me afterwards that "I decided they would join us for lunch at Pizza Huck!"  (Which they did.  We had already decided before church we were having pizza so I guess it made sense to her that we ask some friends.  She also got a special dessert and song at Pizza Hut which I think thrilled and shocked her.)  In a few weeks, we are already having a mini vacation with my mom, grandma, and brother and will use that time to also celebrate with family.  We are planning to go bowling, stay in a hotel, and have blueberry pie instead of cake.  When I told her that was the plan, she immediately squealed, "So many fun things!  Who planned all that?"

Love her smile!

She was convinced that all that was in the sack was a cardboard tube.
A butterfly and some cheese!

So happy number 6 to a dramatic, silly, girlie girl!

Sunday, February 3, 2013

Conleigh's Earthquake Homecoming

3 years ago today was a crazy crazy day.  It followed weeks of craziness, where I spent a lot of time on the phone trying to figure out what was going to happen with the kids at Kenson's orphanage who were in Port Au Prince where the bulk of Haiti's earthquake damage was, where pictures like this made you feel connected but very unsure and worried.
Image source

where CNN's coverage of the condition's at Kenson's former orphanage made you feel really helpless.

where I was trying to figure out what was going to happen with Conleigh's adoption as all of her adoption paperwork was supposedly at the Presidential Palace which now looked like this...
Image source

where I was trying to see what could be done to help Conleigh's orphanage which was in the mountains and away from the most severe destruction but that had been declared unsafe to live in. 

After all of this and lots of conflicting information, it seemed likely that Conleigh was going to be on a plane out of Haiti sometime during the week of February 1.  I knew from most of the families from Kenson's orphanage that once they landed, getting your child was a mess.  I also knew that Conleigh would technically be under the custody of Health and Human Services as she woud be considered a refugee, not my daughter.  So I really hoped to get to Florida before she landed to try to keep her from being placed in the physical custody of the state. 

The short version of the long story is we left Nebraska on a one way flight on Monday morning with no real idea of when she might arrive and no plan other than to stay at a missionary compound in Florida where we could stay indefinitely for an inexpensive rate.  We rented a car and drove about 3 hours to the compound but no sooner had we arrived then we got a call saying the kids were going to be a plane, arriving in Miami that night which was maybe 5 hours away to the south.  (We had just driven 3 hours north to get to the compound.)  So we packed up, got back in the car and headed south.  About an hour or so later, we got another call saying that the kids were not coming that night but probably tomorrow.  So we ate at McDonalds and drove to Kissemmee to spend the night which was about halfway to Miami.  The next morning we decided to sit tight in Kissemmee as there was still some confusion about where the kids might land and if they would really be coming.  We ran to the mall and while there, we received a call saying the kids were getting on the plane and would be flying into Miami that night.  Back to the car and back to hoping we go to the airport before the plane landed.  We got to the airport, saw the two other families from Conleigh's orphanage, and were ushered in to a special lounge of sorts for other families in the same predictament. 

And then we waited.  And waited.  Until finally we were told that the kids would all be taken to a local children's group home and that we would have to receive them there.  Since we had a rental car, we took another mom and her friend with us and we drove to the group home.  Where we waited.  And waited.  Where we were given a tour and told the children would spend the night there.  Where we were told we would not see them that night but to come back in the morning.  Where we were not given any answers to our specific request of "Our orphanage director is coming with our kids.  Will she be allowed to stay with the kids?" 

We headed to find a hotel and returned around 8 the next morning where we joined a room full of parents who were milling around waiting to receive their children.  The children were shuttled from the lodging facilities to the meeting area in small groups so that meant each family had to wait until their child's name was called and then they would met their child and complete the required paperwork that would transfer physical custody from the state to each parent.  We were in the first group.  To say the next few hours were sad would be an understatement.  Conleigh had arrived in Florida around 6 p.m. but did not actually arrive at the group home until closer to 2 a.m..  She had been bathed, taken out of her clothes, given a medical exam, and removed from the orphanage director and the two other children whom she knew and asked to sleep in a strange place with strange people.  She was scared.  She cried for I would say an hour straight, pointing at every doorway wanting to leave.  We shoed her pictures of us together, we brought a doll just for her, but she was overwhelmed.  We asked for the orphanage director to be located as Conleigh had not even seen her since the night before but she had gone to another part of the group home to meet with the other two children from her orphanage.  Eventually, we met back up with her and she talked with Conleigh in Creole and told her she was going to go with us and showed her all the pictures we had brought of our visits, her new brother, our home, etc..  Finally after about 2 hours of waiting, the paperwork was completed and we went back to the hotel to book our flights and get a night of rest before flying out. 

So crazy.  And for Conleigh, a completely crazy way to spend her third birthday.

C-17 military plane like the one Conleigh flew in on