"What lies behind us, and what lies before us are small matters
compared to what lies within us."
- Ralph Waldo Emerson

Friday, May 27, 2011

Celebrating Small Victories

We are very excited that today we found a dumpster! We can finally take our trash out! Apparently, there are only a few dumpsters for an entire block, so we really had to search.We had lunch today with our friends, Jon and Jenny. They are so much fun and so kind.


They also took us to the market.

Underwear everywhere!

This woman was a hoot! She was posing for me to take a picture!




What's for dinner? Pig snout and pig ears!


People were eating this raw fish right off the table. Yum!


Today was the last day of school for the kids here. It's a huge deal! They actually release doves into the air, one for each kid, to celebrate. They also wear really fancy clothes, including enormous bows!


I tried to communicate with a pharmacist, an assistant, the cashier and several other by-standers that I wanted to buy a dropper. I was doing crazy hand motions and drawing pictures. They were talking to me in Russian and showing me things that didn't look familiar at all. But we were all trying. We all clapped when they figured out what I wanted. The whole exchange took about 30 minutes! I thought maybe I could use the dropper to give Moira some water, but the dropper is made out of glass and I'm afraid it might break in her mouth. But, still, we communicated!

I also met a very kind older woman in the stairwell. I tried out my new Russian phrase, "doe-bray oootra", which is "good morning". She gave me the biggest smile! Then she asked in English, "Where are you from?" I was amazed. Apparently, many people speak a little English, but they are too shy to speak in English.

I talked to a street dog today. Usually, the dogs (and the people) ignore me, but this dog wagged his tail and let me pet him. I wish I could take him home with me! He was so skinny.

Nastya is so fun!



Our favorite place to hang out is under this little shelter.





I am feeling really stressed about Moira. I wish she would show a little emotion, just anything. I tried putting her feet under some running water, nothing. I tried sitting her in front of a mirror so she could see her reflection. Nada. She didn't want the yogurt I brought. She wouldn't take a bottle of formula we brought. We tried blowing balloons, but she wasn't interested. I get this sad feeling that it doesn't matter if I am there or not. I know this probably isn't true; I know it takes a lot of time, but today, I just needed a tiny bit of hope. It's like she is down deep in a dark pit and I can't reach her. I have contacted an international doctor to see if he can come to the orphanage to examine both girls.

25 comments:

  1. Please, don't give up on Moira! I look at the last photo and I see death on her face. I know that sounds harsh. But, I think she will die soon if she's left there. She is in there, but she needs Love to bring her out. Oh, I love her so much. I will continue to Pray for all of you, Please bring her home. ~ Jo

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  2. I agree with Jo! Please don't give up on Moira. I only need to see her photos to know that she has endured severe neglect and abuse. Your descriptions of her behavior simply reinforce that theory.

    Know that it may very well take weeks or months to see any noticeable progress and it will almost certainly take years to see any significant progress in her.

    Remember, it took more than a year (she's what, 18 mo old?) for her to become the person she is today. Generally speaking, most therapists will tell you that in young kids like this, it will take AT LEAST twice that amount of time to undo the damage.

    And please know that much of the psychological damage will be permanent. When a child is neglected and/or abused, particularly as a baby, their brain does not develop normally. The younger the child is when this neglect occurs, the more significant the damage. (In short, had she lived a normal first year, and then endured abuse for the second year of her life, it wouldn't be as severe vs. neglect during the first year.) But Moira has endured neglect during the formative early years; this is the worst possible scenario.

    Moira will struggle for years, and to some degree, her entire life, due to her difficult and traumatic early years. It will take love, patience -- and lots of it! -- along with intensive therapy for her to attain any degree of "normalcy." She is clearly in a deep hole; please don't expect to reach her in a matter of days or weeks. It will likely take a long, long time, so please don't be discouraged. She needs patience, love and lots of therapy.

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  3. Just curious....does she display any emotion at all? I guess I am wondering if maybe she has a physical condition that keeps her from making any facial expression such as Moebius syndrome. I see her sweet little face and it does not change in formation from one picture to another. It is a constant look. She may also have psychological issues as stated by other posters, but, I'm curious if something else is at play as well. Anyway, don't be discouraged, she will need lots of love, patience and healing.

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  4. I agree with the other posters, Moira has been subjected to lots of neglect. I do hope and pray she will eat OK soon. I suggest you have Moira looked at by American doctors as soon as you get to the USA. Carrington was brought to the hospital as soon as her mother got off the plane.
    I also don't want to be harsh, but I'm sure she won't last long if left in the orphanage for another few more weeks.

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  5. You do not need a dropper. Simply use a straw. If you put it in liquid and put your finger or thumb over the top as you pull it out the liquid will stay int eh straw. You can then gently release a bit into her mouth.

    Is there anyway to find out from the caregivers if she takes any nutrients from them? If she is malnourished be very careful if you can get her to accept anything from you. You run the risk of re-feeding syndrome. Give her small amounts at a time. Just get her home.

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  6. Just want you to know I am praying for you and dear Moira.

    As I'm looking at her--She doesn't know if she can dare to believe in love, if she can dare to believe that it's really for her. It will take time. She doesn't know why she should believe in it now. The only way she knows to protect herself is not to hope.

    I can see how you both love her. I like seeing how she leans on her Daddy's shoulder. That looks like a beginning place...a place she can begin to dare to believe someone loves her.

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  7. I am praying for you and baby Moira. You are there, you are doing all you can right now.

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  8. Before we went to get our Erika, one of our church elders went on a missions trip and met her before we did. They brought back really bad news. "We don't think you should adopt her. She is profoundly depressed. We couldn't get her to smile, or anything." We knew the Lord had called us to adopt her.
    We went anyway. It turned out she had been waiting for parents and they were not the ones. She was so sad. She also had gotten into some trouble and was sad about that.
    Our daughter Sarah was like a "Wild animal" when she was first contacted by a missionary friend. She recoiled at touch. She cried. The institution where she was said to forget about her. Today she is vibrant and happy.
    Moira is most likely VERY tenderhearted and it is going to take alot before she trusts you. She is probably terrified.
    The Lord will give you wisdom.

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  10. Just started reading your blog. The girls are so precious. Little Moira just breaks my heart. Absolutely heartbreaking what happens to little ones over there. You guys are doing a great thing.

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  11. I am praying for you all . I can imagine how scared and worried you are . (((hugs))) I know the amazing change we have seen in Taiya in 7 short months . Moira seems VERY heartbroken to me :( I wonder too does she move her facial muscles ? It seems the same look , even in her RR photo .
    (((hugs)))

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  12. This will help you!!:
    http://wheremercymetgrace.blogspot.com/2011/05/still-herestill-waiting.html
    God bless you.

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  13. I know there are many ideas concerning Moira. I'm certainly not an expert in special needs children, but we have a son with special needs and I have learned a lot through him. I wonder if Moira could possibly have some pretty severe acid reflux going on. I'm not discounting neglect as an option/factor as well. When our son was 18 months, he was not spitting up so we didn't even consider that he might have reflux. He had a very, very flat affect...no personality and was very quiet. He would barely even look at us. It was a very difficult time. We thought we were maybe facing a non-verbal autistic child. We were so wrong! We had a developmental pediatrician who mentioned that Collin might have reflux and was burning. That is why he also refused to eat so much of the time and had become terribly thin and failure to thrive. We started him on a couple of different reflux meds and within 2-3 weeks, he started to "join the family" as I called it back then. By the time he was 2 he was saying "Ma" and starting to make some sounds. His whole personality changed. He started eating better within 2-3 weeks of starting the medications. We did not see a GI specialist because at that time our dr. said that they would want to jump too quickly to a feeding tube and he thought we could work through this together without going that route. I'm SO thankful for a great dr! My little guy is now 7 and still on reflux meds! I just tell you this story because it is something that may not be considered when you get home.

    God Bless you all!
    Dana

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  15. I looked up Moebius Syndrome (which a previous commenter suggested Moira might have) . . . I don't know how good your internet access is, so I thought I'd post some information on it in case you're interested but can't do much searching where you are...

    This is from the Children's Craniofacial Association (http://www.ccakids.com/Syndrome/Moebius.pdf ):
    Moebius syndrome is a rare congenital (present at birth) developmental disorder, characterized by absence or underdevelopment of the nerves that control facial (cranial nerve 7) and eye movements (cranial nerve 6). Most people with Moebius syndrome have weakness or complete paralysis of the facial muscles. Children and adults with facial paralysis may be unable to smile, frown, raise their eyebrows, close their eyelids or pucker their lips. This not only results in lack of facial expression but may also result in drooling and difficulty with speech. Infants can have difficulty with sucking and swallowing. Other features of Moebius syndrome can include:
    •Motor delays due to upper body weakness
    •Strabismus (crossed eyes)
    •Dry eyes and irritability
    •Dental problems
    •High palate
    •Cleft palate
    •Hand and feet problems including club foot and missing or fused fingers (syndactyly)
    •Hearing problems
    •Poland’s syndrome (chest wall and upper limb anomalies)

    Although they crawl and walk later,most children with Moebius syndrome eventually catch up.Speech problems often respond to therapy, but may persist due to impaired mobility of the tongue and lips. As children get older, the lack of facial expression and an inability to smile become the dominant visible symptoms. As a result, people who are unfamiliar with your child may misinterpret what your child is thinking or feeling.

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  16. This information is from the Moebius Syndrome Foundation website (www.moebiussyndrome.com), http://www.moebiussyndrome.com/go/about-us/what-is-moebius-syndrome.

    Moebius syndrome is a rare neurological disorder that is present at birth. It primarily affects the 6th and 7th cranial nerves, leaving those with the condition unable to move their faces (they can’t smile, frown, suck, grimace or blink their eyes) and unable to move their eyes laterally. Other cranial nerves may be affected, especially the 3rd, 4th, 5th, 9th, 10th and 12th. There may be skeletal involvement causing hand/feet anomalies and/or club feet. Respiratory problems, speech and swallowing disorders, visual impairments, sensory integration dysfunction, sleep disorders, and weak upper body strength may also be present. Approximately 30% of children with Moebius syndrome are on the autism spectrum.

    Symptoms May Include:

    Lack of facial expression; inability to smile
    Feeding, swallowing and choking problems
    Keeping head back to swallow
    Eye sensitivity due to inability to squint
    Motor delays due to upper body weakness
    Absence of lateral eye movement
    Absence of blinking
    Strabismus (crossed eyes)
    Drooling
    High palate
    Short or deformed tongue
    Limited movement of tongue
    Submucous cleft palate
    Dental problems
    Hearing impairment
    Articulation / speech disorders
    Minor mid-line anomalies
    Club feet
    Hand/feet deformities

    Although they may crawl and walk later, most children with Moebius Syndrome eventually catch up. Speech problems often respond to therapy, but may persist due to impaired mobility of the tongue and/or mouth. As children get older, the lack of facial expression and an inability to smile may become the dominant visible symptoms. Moebius Syndrome is sometimes but usually infrequently, accompanied by Pierre Robin Syndrome and Poland's Anomaly.

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  19. I'm not sure why there's such an emphasis on moebius syndrome here. Especially since all of her symptoms can be accounted for as a result of neglect/abuse.

    If you look closely, you can clearly see her utilizing her facial muscles in these photos, particularly in her original baby photo.

    I'm guessing Moira DOES NOT have moebius syndrome. My nephew suffers from this condition. It is EXTREMELY OBVIOUS due to the extent of the facial paralysis that's present in these kids. There is also a characteristic appearance of children with this condition...an appearance that is not present in Moira.

    ALL of her delays can be accounted for due to neglect and abuse for a significant portion (or perhaps all) of her short life.

    Further, clearly, Moira has very little, if any, access to medical care. In kids with Moebius syndrome, the eyelids typically do not work properly. This results in serious corneal damage and ultimately, blindness, if left untreated, as the eye simply dries up and scars without use of ointment to compensate for lack of blinking. I have no doubt that her eyes would be an absolute mess if she really did have Moebius syndrome.

    Further, kids with Moebius syndrome CAN AND DO express emotion, just in different ways. They are cognitively normal in most cases. This child does not react at all, according to the information provided in their posts.
    She exhibits telltale signs of neglect and abuse...
    -flat affect
    -little/no reaction to negative/unpleasant stimuli (e.g. the water on her feet or taking away a toy)
    -her tendency to cover her face and lie motionless when she's placed in horizontal position. (This is HUGE - huge indicator of neglect).
    -avoiding eye contact.

    This is all characteristic of extreme neglect and abuse. All of it.
    I know it's not palatable and it's natural to want to seek out another explanation, but there's just no getting around it in this case. She exhibits the telltale signs of neglect and abuse from a very young age.
    I hope her parents seek out the proper therapy for Moira. She will require intensive therapy for years to come and she will also be predisposed to developing certain conditions, like Disassociative Identity Disorder (DID). DID is common in kids who experience neglect and abuse in particular, as the child seeks to escape the trauma as it's occurring, so they form different identities/personalities as a coping mechanism.
    And, of course, she's apt to suffer from attachment disorders as well (we're already seeing this in her interactions with her new parents.)

    In any event, all of Moira's symptoms can be explained by neglect, abuse and her time in an institutional setting. And as someone who is extremely familiar with Moebius syndrome, I can tell you with near certainty that this is not the case here. ("near certainty" but as positive as I can be without having seen her IRL).
    I know it's not palatable to believe that this is all the result of neglect/abuse, but it appears to be the case. And in medicine, you always look for one diagnosis that explains everything. Neglect/abuse DOES account for everything and then some.

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  20. Sylvia, I'm afraid I'm the cause of the impression that there has been a great "emphasis" on Moebius Syndrome in this post's comments. I hadn't heard of the syndrome before, so I looked it up and thought I'd relay some of the information, in case the parents were interested but didn't have fast enough internet access to look into the symptoms on their own.

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  21. Tears...Hugs...Prayers!!! That is all I can offer my friend... And this... "GOD KNOWS" I promise... tears now rolling down... I wish I could do something!
    Hartmans

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  22. Praying. Just praying. For you and Moira (and Nastya)!

    Carla
    www.bringinghenryhome.blogspot.com

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  23. They are both so sweet. I just read Julia's post about the smile. WOW. I never told you but my sister's middle name is More'a.

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  24. I too heard about the smile....PRAISE THE LORD. Oh we praise the lord...may God lift her up today. May she feel the tender touch of your hands. They are healing her right now in Jesus Name. Sustain and strengthen this family. Amen.

    Following your journey.

    Stephanie Lynch

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