When Real Tears Fall

Rex is a tough kid.  He rarely cries for pain or attention.  The most frequent tears we see are associated with anger and frustration and usually accompanied by vicious screams, kicks, pinches, bites, and hits.  We know his triggers for these episodes, things like being told no or sensory overload, but we cannot always prevent them.

And then, there are other tears.  They are not a daily occurrence and maybe not even a weekly one.  They come unexpectedly in peaceful moments.  Medical and developmental experts are telling us that these spontaneous, seemingly random tears are merely a symptom of Rex's behavioral diagnoses, but I could not disagree more. 

When the real tears are about to flow, Rex gets quiet and pensive.  I could tell a few weeks ago from his face that he was nearing such a moment and grabbed my camera to document it:

As usual, Rex tried to hold it together.  I have quite a few pictures of Rex at his orphanage with his mouth crunched tightly like this and now I know what this look means:

It didn't take long for the tears to start flowing:

And flowing.  No one can tell me that this isn't an expression of true sadness, grief and loss:

And flowing while he sat calmly and almost noiselessly:

And flowing some more:

Do you want to know what stops the real tears every single time?  Words like these, repeated over and over and accompanied by rocking hugs, "Rex, Mama and Daddy love you.  You are safe here.  You will always be in our family.  We will never leave you.  You are our wonderful son and we love you forever."  He listens attentively and the tears slowly subside.

And when it's over, he finds a little spot to collect himself:

These tears are real and they are a part of my son and his story.  They break my heart, but I am so thankful that I can be by his side to offer comfort and love when they flow.

Mysterious Mind

Much of the time, Rex's mind is a mystery to us, but when I saw what he built the other day, it occurred to me that this might be a very rudimentary representation of how his brain works and how he thinks.

The fact that he is able to navigate our right-side-up world as well as he does amazes me.  I am in awe of him.

Our Tiny Sponge

Emilia’s willingness and capabilities for learning have exploded this year.  One thing she picked up in a hurry has been shapes.  The star is her favorite and when she finds one, she usually wants me to sing Twinkle, Twinkle Little Star which wouldn’t be a problem except that she sees stars everywhere.  This evening at Kroger, she pointed out the stars on the little donation box by the register to me.  I had no idea there were so many stars in our daily surroundings.

Emilia can also label at least ten body parts now, identify several different animals, and is starting to count though I don’t think she assigns any value to the numbers yet.  She recognizes herself in the mirror and in current photos and she knows the names of our family members (mama, daddy, tha - short for brother).  I can't keep up with her ever-growing, if not always clear expressive vocabulary which I estimate to be around 70 words now.

We are just so proud and amazed by our little girl.  

July In Random Pictures

We've been so very busy here and it's going to keep up for a while, so random pictures will have to suffice to let you know the latest on our family.

Summer dinner on the fly:
fresh garden herbs, fresh garden garlic, butter,
cream cheese, vegetable broth, and angel hair pasta

Key lime cake for Craig's group at work
to celebrate the end of the fiscal year

Look who is wearing his glasses

Our family leadership at its best

Busted: she was caught eating all of Daddy's potato salad

Love this beautiful boy

Love him so much

She needs a haircut,
but I can't part with these locks yet

We always celebrate good news

Cousins

Emilia loves her "tha" (brother)

Taken by a friend at a picnic

My loves

And there you have it, our last few weeks in photos.  The end.

Research Rex

This week Rex had the opportunity to participate in a research study about his rare genetic syndrome, so we traveled to Tennessee for a couple of days of testing.  Spending 16 hours in the hospital over the span of two and a half days was exhausting for all of us, but Rex did so very well.  He charmed everyone we met with his bright smile and energetic personality and endured even the painful and uncomfortable testing without more than tears.

The blood draw was the most invasive procedure Rex had to brave, so you may wonder why I took this picture.  The reason is that this is the moment Rex is being immortalized.  The blood drawn here will be sent to a repository where it will be preserved and continuously grown for research.  Rex's cells will stay alive there forever. 

Scheduling an EEG at 10:00 am was probably not the smartest thing the researchers did. I consider it a minor miracle that Rex was able to fall asleep for the time required to get the necessary data.

The most unexpected news we received from the research team is that they believe Rex is affected by a second complex genetic syndrome in addition to the one we already knew about.  They have a theory on which one it might be, but sent us home with a list of tests that should bring some clarification.  So, once I get through what I anticipate being a scheduling nightmare, my little love will have to undergo more testing.  It really breaks my heart because it changes nothing in terms of his developmental prognosis, but could add a few physical complications that may need to be addressed.

On Friday afternoon we had some down time, so we enjoyed a lunch at Rendezvous Restaurant.  This is the wonderful babysitter who traveled with us and made sure Emilia enjoyed herself while we were at the hospital with Rex.

Then we went to Mud Island to explore the exact scale model of the Lower Mississippi River.  We had fun.

Oh, and we hit two milestones on this trip.  First, Rex took off his own diaper for the first time.  I am very much on the fence on whether this is a good or a bad thing.  And, while we were at the hospital one morning, Emilia, at the hotel, broke down crying and asking for mama, mama, mama.  I love that she missed me and wanted me.

Now on to a new week which, if all goes well, should be rather calm.

Rex's Together Forever Day Anniversary #2

Two years ago today, we took Rex out of the orphanage forever.  I think he knew even then that he was beginning to rule a kingdom requiring a great overhaul which only he could bring about.  The kingdom needed more challenging work for its inhabitants, more patience, more chaos, more flexibility, more courage.  It could do with more laughter and more tears, more noise, more appreciation of the little things, and so much more love.  King Rex set about his work instantly with considerable dedication and in two years has managed to not only change us, but also himself.

Rex is more than a long list of complex diagnoses and bleak prognoses.  He is a little boy with thoughts and feelings, likes and dislikes, strengths and weaknesses.  What makes him so special to us is hard to put into words, but here are some of the things we love about our Armenian treasure:

When Rex wakes up in the morning, he climbs into our bed and makes sure he gets his snuggles in.

Rex will eat just about anything on a sandwich or a cracker/chip.

The roughest skin on Rex's body is on his palms.

Rex is a guys' guy.

When he's ready to fall asleep, Rex pulls the blanket over his head and is almost instantly out.

Rex loves music, climbing, jumping, and banging stuff.

Rex distinguishes between his parents and the rest of the world.

Rex is all boy, skinned knees, bruises, boogers, sticky hands, sweaty hair, and able to turn any object into a weapon.

Rex's smile stretches from ear to ear and his laughter peals through our life like a priceless reward.

Rex is curious about how things work.

Rex has toy magic.

Rex is confident and strong.

Happy Together Forever Day, my Armenian love.  You are a miracle.

Little Miss Sunshine

We love, love, love our girl.

She wakes up with the brightest smile on her face each morning, doles out countless hugs and kisses throughout the day, showers shoppers everywhere with enthusiastic salutations, balls up her little fists and shakes them when she's mad, tries saying new words all the time, loves her family, and shines like the sun.