Sunday, September 23, 2012

Six Years Old

 Gideon turned six years old, and to celebrate, we invited a couple of families over.  I was really trying to keep this event low-key, since Gideon is very easily overwhelmed.  Cupcakes and root beer floats in the yard, with some kids running around petting the goats and playing tag.  Gideon was staying fairly calm for the first part of the party, when everybody was just moving around him, talking, playing, etc.  Then came the part where everybody turned toward him, gathered around, and broke into song.  Yeah.  That really did not go over so well.  The boy completely panicked.  We snapped the picture above as he blew out the candle (we had been practicing that part, and he did great!) but that tense look on his face, his eyes averted from the crowd . . . oh, my sweet little boy.  Within moments of this picture being taken, he was ready to go inside and take a break from the party.  He was too nervous and anxious to even try a bite of cupcake, so we went inside and had some downtime, just mommy and Gideon.  As long as it is just me and him and the family, hanging out at home, Gideon is usually happy and calm.  But if we go out in public, or if people come over, we just never quite know what is going to send him into a panic.  We look for the triggers, like transitions, raised voices, unexpected events.  We look for the warning signs of escalation: rapid breathing, wild, glazed eyes, clenched fists, hysterical giggling.  We try to redirect and head it off.  Sometimes we succeed.  Sometimes we don't. 
 After a little while, I thought he was ready to come out and lick the frosting off his cupcake, but as you can see from his body language in the pictures below, he was clearly still suffering from quite a bit of anxiety.  Hunkered down, avoiding eye contact, tense and teetering on the edge of panic.  All because he was surrounded by a small crowd of people who love him and wanted to celebrate his special day with him.  He had no idea what to do with that.
 Some days I see such huge strides with my dear little Gideon.  Amazing progress.  Astounding breakthroughs.  Beautiful milestones being met.  I see him becoming stronger, and calmer, and more in touch.  And then a day like this comes along, where we all just want it to be fun and relaxed, and instead Gideon is in panic mode.  
And I just want to fix this for him.  I want him to be able to relax and enjoy his birthday party.  I want to go back and reclaim the five birthdays that I missed . . . that he missed.  I want those five and a half years back.  The years that were stolen from him.  I want to be able to swaddle him as a newborn, and rock him to sleep, and to build those crucial neural pathways in his little brain that mommies build when the gaze into their baby's face and touch their cheeks and say sweet, silly, beautiful things.  I want to be able to go back, and re-do those years, so that he could know that when he spills his milk, he will not be hit.  When he is naughty, he does not need to cringe and cower in fear.  When people gather around him, smiling and singing to him, he does not need to panic.  

I want to be able to give to him what I cannot.  I want to take away this anxiety and fear.  I want his heart to be trusting and calm.  I just want so much for him, and I missed out on the five most crucial years of his life.  And instead of hugs and eye contact and rocking to sleep, he was laying in an orphanage, waiting.  We have so much lost time to make up for.  
And on days like this, when Gideon reminds me of how very wounded he is, I am angry.  How can I not be?  People have hurt my baby.  Through abandonment, and neglect, and abuse, my baby's heart has been deeply scarred.  I am angry, and I am sad, and I am helpless to take away this hurt.  

He had a lot of trouble calming down enough to open his gifts, but he did really like this little vibrating bug toy from his Grams. 
I guess I am just sharing this raw truth with the world because I do not want to make it seem as though Gideon's transition into his new life has been without bumps.  And because I want the world to know what the reality is for children who grow up in orphanages.  And because I want people to know that no matter how wounded my son's heart is, and how much he screams and panics and tantrums and acts out, he is a delight to me and I would do anything for him.  He did not deserve this.  No child does.  

Gideon is home now, and he is healing.  He is learning what it means to have a birthday party.  He is learning what it means to look into a mommy's eyes.  He is learning to trust.  He is learning to let daddy hug him.  He is learning to let a hug calm him down instead of scratching his ears and legs until they bleed, and ripping out fistfuls of his own hair to calm himself.  He is learning how to go out into the big wide world, even if it seems really, really scary.  He is learning, all day, every day.  He has five and a half years to make up for, and he is learning as much as he can, as fast as he can.  But on days like this, when life simply feels too overwhelming . . . the road just seems so long.  
And I want you, my dear readers, to know that there are so many children still waiting for a chance.  A chance to be loved, and to begin to heal.  Not all children in orphanages are physically abused.  Not all of them are as severely neglected as my son was.  But all children need family.  All children need love.  They need their own special place in the world, where they know they belong, always and forever, no matter what.  

Is it scary to adopt a child, knowing that he is coming with this sort of baggage?  Heck, yeah.  But it would be far, far scarier to think of leaving him there.
 These were the adoption photo-listing pictures taken of Gideon when he was waiting at the orphanage. 
I know this look.  This is a scared, nervous, shut-down look that I still see on occasion.  I saw this look just today, when I was walking through the living room and accidentally slipped on one of his toy cars.  I cried out as I slipped, and Gideon, on his hands and knees driving his little cars, heard me cry out and immediately threw his hands over his head, rolled onto his back like a turtle, and stared up at me, frozen in terror, as though he thought he was about to be slapped.  That panic is so deep in his heart, with a hair-trigger that is still on high alert.  It broke my heart to see him so terrified.  And it breaks my heart to see that look in this photo.  So many years I missed.  So many days.  So many moments.  I just want to scoop that boy up and kiss his hair and take away his pain.  When I see him looking so small and vulnerable on that chair, my heart breaks for him all over again.  I wonder where I was that day.  What I was doing.  Before I even knew that I had a son whose heart was being broken.

Gideon is worth it.  Some days are easier for him than others.  Some moments feel insane, when he is screaming and self-harming because going into an office building sends him into a full-blown panic attack, and all I wanted to do was run a quick errand, and instead it ends up being a gigantic fiasco with me sittting cross-legged on the hallway floor of that office building, hugging and rocking a sweaty, raging, struggling, terrified boy, while dozens of annoyed workers poke their heads out of their doorways to glare at our spectacle, and my other kids are standing around, bewildered and restless, as the quick errand morphs into a huge, emotional meltdown out of the blue.  Yeah. Some moments with Gideon are really intense.  But he is worth it.

Gideon is not alone in this world anymore.  I cannot fix this, but I can be here with him, every step of the way.  I can hug him, and love him, and never give up on him, and I can teach him new ways to deal with his very big feelings.  And as much as I love Gideon, and as much as I cry for him when he is hurting, I know that our Healer loves him even more, and cries for him more deeply.  And it is our Healer who gives me hope.  Hope that these wounds on Gideon's heart are not mortal.  Hope that healing is possible.  That what has been broken can be made whole.  Our God is bigger than this hurt.  Our God is stronger than the baggage.  Our God is love, and His love will win.

And I want to leave you with my beautiful boy's shining smile as he shows off one of his new accomplishments:
 After some initial fear and panic, Gideon decided that sitting on the toilet was not so scary after all, and he has not had a messy diaper for weeks now.  He does not tell me when he has to go, but as long as I remember to stay on schedule and keep putting him on the seat throughout the day, he does great.  And his beaming grin when mommy claps and cheers for him . . . after sharing with you about the intensity of his panic attacks, I just felt that I should leave you with this.  Yes, there are those moments that are intense and heart-breaking.  But they are not what dominates our days.  These moments are the ones I treasure.  These moments are plentiful, and beautiful.  The moments where Gideon is smiling, and his eyes are looking right at me, not afraid, not nervous, just delighting in life.  Full of joy and wonder and excitement.  I love this kid so much.  And I thank God for him every single day.

Friday, September 14, 2012

Micah's Milestones (a.k.a. Micah's Miracles)

According to Micah's CT scan, he has very little brain and a whole lot of fluid inside his skull.  The untreated hydrocephalus caused massive damage to his brain for the first four years of his life, and the profound neglect  did not do him any favors, either.  His neurologist is amazed.  I am amazed.  According to his CT scan, he should not be able to do the things he is doing.  Like feeding himself:

and coming to me when I call him (well, I am actually signing and beckoning and smiling big at him too, in addition to calling him, since we know he is very hearing impaired) and he is climbing up onto furniture, and back off again, and sitting up beautifully (although he still always has to keep one hand on the ground for support):

He is not quite crawling, but he is Army-crawling now:

and scooting himself around the house on his bottom:

He drew today, for the very first time:

although he still is not sure how excited he is about this coloring thing.  But Mommy was so, so excited that I think he may have wondered if coloring is not so bad after all.  Still, I think he was way more excited about the marker lid.  He absolutely LOVES toys that fit over his fingers.  LOVES them.

I have not yet caught him signing on video, but I will have to try to capture it, so I can show you that this boy is UNDERSTANDING the concept of sign language!  I was starting to wonder when/if the lightbulb would ever come on.  He is now signing "please," "all done," "sleep," and "more."  I can't even tell you how excited I am that we are communicating!  Gideon has been signing for quite awhile now, and I am so giddy with Mommy excitement that Micah is joining in!  I am working on a few other signs with Micah, showing him and doing hand-over-hand, signs like yogurt and oatmeal and diaper and . . . well, a whole bunch of other ones!  We are also starting to introduce picture cards for communication, so I will keep you posted on that fun, as well!  

He is beginning to play with toys instead of just throwing them or hitting himself in the head:

He is standing up so nice and tall:

And even starting to take little tiny steps when supported:

And he has become such a lovebug!

I have been reading a book called 
The Brain That Changes Itself.  

Fascinating.  I don't find a lot of spare time to read these days, but what I have read so far is HUGE.  Inspiring.  Hope-filled.  Challenging.  Confusing.  Miraculous.  I wish I could make this book required reading for every doctor, therapist, and teacher my kids come into contact with.  

Here is a brief description of the book:

An astonishing new science called "neuroplasticity" is overthrowing the centuries-old notion that the human brain is immutable. In this revolutionary look at the brain, psychiatrist and psychoanalyst Norman Doidge, M.D., provides an introduction to both the brilliant scientists championing neuroplasticity and the people whose lives they've transformed. From stroke patients learning to speak again to the remarkable case of a woman born with half a brain that rewired itself to work as a whole, The Brain That Changes Itself will permanently alter the way we look at our brains, human nature, and human potential.

And here are some reviews:

From Publishers Weekly

For years the doctrine of neuroscientists has been that the brain is a machine: break a part and you lose that function permanently. But more and more evidence is turning up to show that the brain can rewire itself, even in the face of catastrophic trauma: essentially, the functions of the brain can be strengthened just like a weak muscle. Scientists have taught a woman with damaged inner ears, who for five years had had "a sense of perpetual falling," to regain her sense of balance with a sensor on her tongue, and a stroke victim to recover the ability to walk although 97% of the nerves from the cerebral cortex to the spine were destroyed. With detailed case studies reminiscent of Oliver Sachs, combined with extensive interviews with lead researchers, Doidge, a research psychiatrist and psychoanalyst at Columbia and the University of Toronto, slowly turns everything we thought we knew about the brain upside down. He is, perhaps, overenthusiastic about the possibilities, believing that this new science can fix every neurological problem, from learning disabilities to blindness. But Doidge writes interestingly and engagingly about some of the least understood marvels of the brain. (Mar. 19)
Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved. 
"Mind-bending, miracle-making, reality-busting stuff with implications for all human beings."
-The New York Times

"A remarkable and hopeful portrait of the endless adaptability of the human brain."
-Oliver Sacks

"The power of positive thinking finally gains scientific credibility."
-The New York Times

Anyway, I am always researching and trying to learn more, and this is my latest discovery.  Anyone else read this book?

It seems that a lot of people lately have asked me, in a hushed tone, "So how is it really going?"  And I can tell them, and tell you, that it is really going just as great as you see here.  I am not just saying that things are great.  They truly are.  Sure, these kids are busy, and expensive, and complicated.  They are a lot of work to get from here to there.  They are noisy.  They have a lot of appointments.  They have anxiety issues that still make it tricky to go anywhere without panic attacks and screaming fits.  And even with all of that, I can say, completely and without hesitation, that I am blessed more than I know how to express.  

Thursday, September 13, 2012

What a difference botox makes!

 Gideon's cerebral palsy primarily affects his feet and legs.  Here were Gideon's feet before any treatment.  He walked completely on his toes, could not flatten his feet down to put his heels on the floor, and understandably, had a lot of difficulty balancing.  He had to hang on to walls or furniture to make his way around the house.  We've been doing physical therapy and stretches for months now, but those calves were still very tight.
 You can see him losing his balance here.  He did such a great job of getting around, but balancing on his toes made it very challenging for him to maintain his balance:
 It has also caused some damage to his toes, which we are going to try to correct with non-surgical methods over the next few months.

We took Gideon to see a physiatrist, who recommended botox injections into Gideon's calves.  The botox works to loosen and relax the muscles, allowing a stretch that was previously impossible.  Some kids have the (very painful) botox injections done while they are awake, but because of Gideon's hyperactivity, impulsivity, anxiety, and limited self-control, we all decided it was necessary to sedate him for this procedure.  (And since he was sedated, it was a perfect time to get his MRI done, as well.)  The botox provides temporary results.  We will most likely be repeating this procedure every three to six months.

The results were not immediate.  It takes 24 to 48 hours to see any change.  So when Gideon awoke after the procedure I took him home and waited to see what would happen.  And sure enough, within two days, I was able to gently stretch Gideon's darling little feet into a fully flat position!  It is truly remarkable!  So once he was experiencing his new range of motion, we got him fitted for AFOs (Ankle Foot Orthotics) and then we got to go shoe shopping to find shoes big enough to fit over the bulk of the AFOs, with velcro long enough to fasten around them, and also stiff and sturdy enough to keep the boy off his toes.  

We discovered that even with the AFOs on, he still wants to walk on tiptoe, and the light-weight shoes allowed him to do so.  But we discovered that these heavier, clunkier shoes keep his heels flat on the floor.  And his walking is just beautiful!  He is balancing, his gait is much more even, and he can walk and walk without falling down!  

I think what amazed him the most was that he can stop in the middle of a room, without holding on to anything, and balance!  He has never been able to stop walking without tumbling to the floor before!  

Yay for breakthroughs!  
Go, Gideon, go!

Tuesday, September 4, 2012

World Cerebral Palsy Day

Today is September 4, which means it is World Cerebral Palsy Day!  In honor of this day, and in honor of my two beautiful children who are living with CP, I have decided to share with you a few of the faces of CP.  Faces of little ones waiting, all over the world, for their mommies and daddies to find them and scoop them up and realize what they have been missing.  

Carolina     6
Girl, Born May 20, 2006
Carolina is such a beautiful girl; beautiful brown hair with olive skin.  She has cerebral palsy, and does wear AFO’s on both feet.
From her medical records: Cerebral palsy, convergent squint, mental delay.   She can walk by supporter or holding one hand.  She says separate words, understands simple speech, is affectionate and friendly.   Physical therapy and a loving family will bring MIRACLES for this little girl!
Carolina was transferred in 2011 to a boarding school (not an institution).
$5300.25 is available towards the cost of my adoption!

Hudson     1 1/2

Boy, born October 2010
Eyes of Gray
Hair light brown
The nature affectionate, sociable
Cerebral palsy

$0.00 is available towards the cost of my adoption!

Daisy     7
Girl, born March 2005
Epilepsy; Other paralytic syndromes (cerebral palsy); Microcephaly; Coloboma of optic disc; Severe mental delays; intracranial injury

Daisy is a sweet flower who needs a family to really blossom!  Otherwise, she’s destined to a life in an institution.
$50.50 is available towards the cost of my adoption!

Zeke     2
Boy, born approx January 2010

Zeke has cerebral palsy. He cannot hold his head up, sit, or move his limbs.

From someone who works with him:
Zeke is such a happy little guy. He loves to sit outside and watch the leaves blow in the wind. His eyes light up each time he is given attention. He loves to be held and even more loves to be tickled. Zeke has the cutest little dimples and a beautiful smile that can melt any ones heart! He is always in a good mood and very rarely cries. Even though his name was given to him recently, he already response to it!  Zeke is a picky little guy and often requires special meals made for him as he doesn’t like what the other kids are having. He has only been here with us a short time, but has already touched many people’s lives. He is such a joy to be around and is loved dearly by his nannies, volunteers, and the other children!
Zeke has very little control of his muscles. We are hopeful that with the right therapy he will improve in these areas.

Theodore     10

DOB: 2002
Diagnosis: spastic diplegia cerebral palsy (only effects lower body), severe malnutrition, lagging behind in all aspects of development.
Theodore has spent his life in an orphanage where he’s received very little care for his physical, mental or emotional needs. As a result, he is very small for his age (this is a current photo of him at 10 years old). He’s recently undergone a series of tests and procedures at a hospital in his country to address some of his medical needs.

Garnet     10
DOB: 2002
Diagnosis: Cerebral Palsy- quadriplegic
Garnet is 10 years old. She has spent her entire life in a crib. She can move her head and her upper body some. She is aware of everything going on around her and will follow activities with her eyes/head. She turns her head to look when people are talking. She can hold onto toys when they are given to her. She smiles at people when they talk to her and responds positively to touch.
She eats blended food from a bottle, though she is learning to eat from a spoon.
Additional photos and videos from August 2012 of Garnet are available.

Channah     10

DOB: Sept 9, 2002
Special need: cerebral palsy
Though she was diagnosed to have mental delays, it’s been noted that it’s like orphanage delays in general.  She does will in day-to-day tasks.  In the orphanage, she has much less education and very rare contact with the outside world compared to other children of same age.
She has been attending the special education class in the orphanage. Yet, she will go to the local special education school in mid-September.
She enjoys playing with balls, listening to music and dancing.  She doesn’t like being ignored.  She likes pink and green, and she likes wearing dresses.
She can walk and go upstairs with no problem. Every day she dresses up, takes the bath, eats and sorts out the bedding by herself.  She can fully take care of herself.
Additional photos and video available.
$10.00 is available towards the cost of my adoption!

Evan     9
Boy, Born June 2003

Diagnosis: cerebral palsy, epileptic syndrome, significant mental Retardation.  Unable to walk, spastic/tight muscles.  Evan is blessed to still be at the baby house (as of March 2010), but once he is transferred, he will spend the rest of his short life bedridden.   Please consider being a loving family for Evan!

From a missionary who visited with him in March 2012:  Evan is also in the boys new house where just 9 children are.   He was gentle, lovey, cuddly and just so sweet.   He is severely delayed but a gentle delight to be around and he loved stacking blocks with me. He was picked on quite a bit by the others who I saw hitting him.   Felt so desperate for him.

$50.00 is available towards the cost of my adoption!

Josiah     5
Boy, born May 2007
Josiah has cerebral palsy. He can be very interactive and can comprehend what is being said to him. But he cannot sit, hold his head up, or roll over unassisted. He also has seizures that are being controlled with medication. He loves when people sing songs with him.  Josiah is a very happy and loving boy. He is always full of smiles.

From someone who works with him:
We have had the privilege of caring for Josiah for 3 years. He is the oldest child in our care and has been with us longer than any other child. Josiah was abandoned at a nearby hospital when he was 1. Josiah has cerebral palsy and requires special care and attention. He has limited control over his movement and needs support when sitting. For 3 years, our nannies and staff have cared for Josiah, fed him and bathed him. Ask any person who has cared for Josiah though and they will say that they are the one who was blessed.
When you are with Josiah, it is clear that God’s love resides in Josiah. Josiah can’t talk, but he loves to smile and interact with anyone who will talk to him. Josiah cannot sing like most of us, but each day during nanny prayer and singing Josiah joins in with a big smile. Our deep desire is for Josiah to join his forever family through adoption. We have had difficulty finding that family, but we know that God has a plan for Josiah . We also know that where ever he goes, Josiah will be a blessing as his loved ones bless and care for him.
  • Multiple unrelated children can be adopted together
  • One parent must be at least 35 years old
  • Parents must be married at least 10 years (or if close, prove they have known each other 10 years)
  • The number of children can depend on other factors (marriage and parent age)
  • Singles may currently adopt
  • Past depression is OK, but must explain the circumstances and past and/or current treatment.
  • If a criminal history/background, must be explained in detail.
  • Travel is not required; however, it is strongly encouraged
  • Travel for pick-up is also not required, but strongly encouraged. Escorts can be provided, for an extra cost.  The trip for pick-up is usually about a week long, so you and the child could get to know each other well in their environment.
  • ESTIMATED TOTAL: $10,320 – $10,570 roughly (plus travel)
$6734.00 is available towards the cost of my adoption!

Aren't they all beautiful?  These children, and so many more, are featured at 

And how did we celebrate World Cerebral Palsy Day, you ask?  We spent the day at Shriners Hospital in Portland, Oregon.  The appointment was for Gideon, Blessing, and Micah, and let me tell you, it was LONG.  It was THOROUGH.  It was GRUELING.  It was AMAZINGLY HELPFUL.  Very long day, leaving at 4 am and arriving home at 7 pm, and I'm so glad to finally be home.  We have a game plan.  We have surgeries in the works.  For all three of the kids.  That's a whole other post!  But the people at Shriners are so patient, and kid-friendly, and eager to help, and able to endure high noise levels . . . I just can't say enough good things about them!  Thank you, Shriners!