Friday, September 1, 2017

Baby, What a Big Surprise









It's Friday morning, and we're sitting in our hotel trying to sort through what's happened this week. It all started on Monday morning, when we walked into the government office that handles adoptions here. This is where we would see Mary's file for the first time, and request a referral to meet her.

The first thing we learned was that Mary wasn't where we thought she was. We hoped and believed she was still at her baby house; but alas, she has already been transferred. Her new home is a special needs institute for boys and girls aged 4 - 18. Some are only mildly disabled, others profoundly so. Most of them spent the summer at "camp"-- a nice word for a not-so-nice place where the children go so the institute staff can have a holiday. Mary and some other little ones were to be summoned back from camp a few days early, so we could meet her. The rest of the children would come back for the first day of school, September 1st.

The next thing we learned set our hearts spinning. While sifting through the foreign conversation in the office, we heard the dreaded word "brat"-- brother. Unknown to anyone before now, Mary had a brother-- which meant that we might lose her. If the brother was available for adoption, then we might have two choices: take both, or take neither. They would not split up brother and sister for foreigners, even if the siblings had never met.

The next while was a bit tense, to say the least. Our lawyer hustled us out of the office so that the officer could investigate the brother's situation. Our facilitation team also investigated, calling its contacts in Mary's region. We had minutes to decide what we would do if the brother was available. How could we take both, when we didn't have a bedroom for a boy?

Imagine our relief when we got the news: the brother had already been adopted. They are happy to split siblings for natives, just not for foreigners. We went back into the meeting thinking, "Problem solved"-- only to learn that Mary had another brother!

The good news was that this second brother didn't seem to be "in the system," which meant that he probably wasn't available for adoption. Our facilitators seemed satisfied with this; but it was cold comfort to us. We left our appointment not knowing for sure if we would ever meet Mary.

We spent the next 28 hours in a fog of the unknown. It was a time of praying and wondering. We had no news until Tuesday afternoon, when we went back to pick up the referral.

It was then that we heard, through unofficial office gossip, that the second brother had not been found in the system. We would hear no more until we reached the institute; for only the director there had Mary's full file. The files in the capital hold only bits and pieces, many of them wrong. It is a sad, broken system, and we were feeling its brokenness as we left with Mary's referral.

We headed out to region early Wednesday morning. A two-hour drive brought us to the director's office, where we finally got the straight dope. Mary's brothers were both younger than she, and came from a different father. The younger was adopted, and the older was with his father. So that issue was finally put to rest, 48 hours after we learned of it. It was the biggest relief of the day.

We also learned why Mary was abandoned, we think: because she has epilepsy. The poor child lived with her mother almost four years, until she got sick enough to need a hospital. It seems that her mother dropped her off there when she started having seizures, and never came back. The mother lost her parental rights, and Mary became a ward of the state. She went from the hospital to the baby house, where she spent about two years. Then it was off to the institute this past May.


The actual meetings always come as a surprise to us foreigners. We were on our way to a pre-school room when we came across a caretaker in a hall, overshadowing a tiny little girl. It took a second to recognize her as Mary; for she was much more haggard than the girl in her pictures.

She was also terrified, of course. It took most of her strength to climb the stairs to the pre-school room, where we all sat while our facilitator read through her file. She was playing with a puzzle when we saw the first seizure.


It's the sort of thing that's hard to believe until you see it with your own eyes. Mary suffers from a fairly rare type of seizure called "atonic"-- without muscle tone. One second, she's as alert as can be. The next, she flops down like a rag doll-- as if someone cut a wire in her brain. Two to five seconds later, she goes right back to what she was doing before-- as if she has no idea anything happened.

This is a long way from what we were expecting, to say the least. We'd been told that Mary's epilepsy was mild, and caused her few problems. Yet in the first hour we spent with her, she had at least ten drop attacks. We also saw times when her eyes fluttered, but she didn't drop. We think these little episodes are probably mini-seizures. Plus her hands are shaky, although this may be a side effect of her medication.


The biggest danger of drop attacks isn't the seizures themselves, but the falling. Mary smacked her head on the table once in that first meeting, even though the caretaker was holding her. She had another drop attack on the way out, right at the top of the stairs. If the caretaker hadn't been holding her hand, then she surely would have fallen down the whole flight.

What we're wondering now is, how in the world are we going to keep this little girl safe? The seizures come on too fast for her caretakers to react, even if they're being careful. Rob's spent the last few visits following her around with his arms corralled around her. Lest you think that's over-protective, he's already saved her from falling many times. She's safe on a couch, provided she's sitting back. She's only safe at a table if she's strapped to her chair-- up high, so that her head can't fall forward. It's all rather scary, and we are a bit overwhelmed!

The first step is obvious: The child needs a helmet or headband to save her poor head from hematoma and concussion. The next step is to find her a good doctor. An EEG will give us a better idea what we're dealing with. She needs off her medication, which obviously isn't working, and on some better ones. From what we read, though, atonic seizures don't always respond to medication; and even if they do, it takes time and trial to find the right ones. People also recommend the ketogenic diet, which sounds dreadful. "Welcome home, little girl, here's a list of all the things you can't eat: anything sweet, and anything fun."


Then there are the behaviors. Mary is an active child who is tired of being restrained. She seems to see us as her ticket to freedom, her chance to break all the rules. We have little authority over her; for we aren't her parents yet, and aren't on our home turf. The caretakers are nice, but we're still  paranoid about upsetting them. Beyond that, Mary's way behind developmentally. Her calendar age may be six, but her developmental age is somewhere between two and three.

And yet... what a darling. People used to call epilepsy the "sacred disease," probably because they associated it with visions. We know it's more scourge than sacred; but even so, there's something special about it. It's a whole new feeling, having a child flop down in one's arms like that. There's nothing we wouldn't do to help this helpless little girl.

Needless to say, it's been an exhausting week. We are emotionally drained and physically worn down. We plan to stay and visit for a few days, and then head home Sunday or Monday to wait for court.

Alas, the wait may be far longer than we like; for adoptions are getting harder over here. Certain government figures seem to care more about national pride than they do about children's lives. Please pray that the Lord will tear down all the obstacles they throw up.

35 comments:

  1. Thank you for the update. I have been thinking of you, worrying about the silence.
    Wishing you strength and peace of mind!

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  2. the look in her eyes has changed...
    Praying for you. It is hard.

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  3. She's adorable!!
    Praying for you and little Mary.

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  4. Thank you for the update - lifting you all up in prayer.

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  5. She is beautiful and perfect and looks totally at peace in your arms. Sending love and patience! Love, Tam

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  6. She is beautiful. Seizure dog! Dogs are wonderful and while they can't help stop the seizures they can help keep her protected.

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  7. So wonderful to meet Mary. What a lot to absorb--we'll continue to pray.

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  8. I'm praying for your next time of waiting. I'm sure after being with her it will be even harder. Praying for big answers on her epilepsy. Goodness I'm excited for you guys and don't even know you. :)

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  9. Been following your story from England and hoping all is working out for you, so glad to see an update, despite the struggles you are facing I hope the rainbow shines after the rain clouds have cleared. Sending encouragement and love to you, Katie

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  10. Wishing you blessings and peace on this journey for Mary.

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  11. Wow..we are overwhelmed just reading. Our prayers and thoughts are are going to be constantly with ya'll. ((Hugs)) from the Hartmans

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  12. Praying for all of you! Thank you for the update!

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  13. And...she's absolutely beautiful. I recognize so much of how she looks and it hurts and brings back so much of what we try to forget because it feels overwhelmingly hopeless at times. Tears.

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  14. I was so glad to read this update. We will continue to pray for you all!

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  15. What a journey. So thankful that she has an opportunity to be adopted by folks who understand that God never leaves us alone in his calling to us. Praying that He continues to give you peace and strength as you care for the orphaned! She's a beautiful child and I can only imagine the joy you will bring to each other in the next few days and then in the years to come.
    And my God will supply every need of yours according to his riches in glory in Christ Jesus. To our God and Father be glory forever and ever. Amen. - Philippians 4:19-20

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  16. What a roller coaster ride of a week! Praying you through and entrusting you all to the One whose character is flawless and plans are not thwartable.. He is Redeemer! Truly a joy to see her eyes lighting up and her face awakening. Much love!

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  17. Maria-Joelle MarchalSeptember 1, 2017 at 10:17 AM

    I can see her eyes changing over the course of these photos even. Julia, the photo of she and you on the bench...You two are absolutely meant to be together! Praying for you all for an easy road as you bring this beautiful and wished-for child home. Thank you so much for the update. We are all rooting for you here.

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  18. What a beautiful little girl. So happy you found her - and that she is "finding" you. Sending prayers for all to go smoothly and swiftly from now on.

    Susan in Kentucky
    Cousin to 2 from U.

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  19. Oh wow. You guys always seem to have some of the toughest obstacles to overcome! Praying for you right now.

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  20. Oh, that last picture though! Praying for you, and for the process.

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  21. Adoption... the only thing you can actually expect is that it will be nothing like you expected. And yet these precious lives... they are so very worth it. Praying for you as you walk through all the feelings of love, fear, being overwhelmed, awe, wonder and trying to know what to do with all those mama (and papa!) bear instincts for a child you don'y yet have any say over.

    She is stunning.

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  22. Such a lot to take in. Praying for strength for all of you as you make your way on this journey. Possibly her medications aren't being managed appropriately at the institute? (likely I'm sure). I'm sure you are overwhelmed at the moment, but something to keep in mind in the future is CBD oil (specialized form of medical marijuana) that has shown promising results for some with seizure disorders.

    http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/other-treatment-approaches/medical-marijuana-and-epilepsy

    Thinking of you all & praying for good outcomes. She is a beautiful little girl!

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  23. What a precious girl! Sending love and prayers. Praying for strength and wisdom. Praying that God opens doors and makes clear to you His path for your family. Praying for Mary - for healing and protection.

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  24. Praying for you all; may God give you strength~

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  25. Carl and Kim both know their epilepsy. And UVA has one of the best pediatric epilepsy program in the nation. You will not be alone. I can see God's hand, even now!...(Sandy writing as Carl)

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  26. She is beautiful. So much to absorb! May God be gracious in the final proceedings and in finding the right doctor and medication. May He grant relief to her constant struggle of seizures and their consequences. May He empower you and Rob and the boys with love, wisdom, and strength. Lots of love to you!

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  27. I'm so happy for all of you, esp. Mary. I pray she gets all the love and medical help that she needs. You are inspiring! I pray God continues to give you strength and wisdom on this long journey. I pray that each obstacle will be removed in Jesus' name. Amen. Thanks for the updates.

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  28. She was meant to be with you and to get the medical help she needs. Thank you for all of the pictures!

    Sue H.

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  29. I love you guys! I love your writing and hearts, always an inspiration to me.

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  30. What a roller coaster journey! God walks before you and beside you. Praying for all!

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  31. I'm so happy for you all & am praying for the best possible outcome! I have a friend who spent the last several years fighting to legalize cannabis oil in PA to try to save her daughter from intractible epilepsy. Her sweet girl was a mere shell of a person--no joy, no connections, just barely existing. I am now a huge believer in this treatment. She's a real little girl again, going to school, playing, smiling, & living! Your Mary is beautiful--my heart is with you!

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  32. Julia, despite all the worries you look very happy holding her. Beautiful! Praying court wont take to long.

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  33. Mary and your family are continually in my prayers. May you both have extra strength to get through the many obstacles coming at you. Much love, Adriane

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  34. So excited to hear about her. I will be praying for.

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  35. Wow....I have never heard about this, making me wonder if perhaps it is more manageable through medication here? A young lady in our church DEVELOPED something like this....in fact it sounds exactly the same. The only way she was allowed to stay in HS was if she had a caregiver with her at all times prepared to catch her. This malady came on suddenly, and as Christmas (and the anniversary of both a home fire, and the death of her baby sister from cancer approached.) The doctors felt this was a mental health response, not something physical. After therapy (and medication?) she recovered..... Look at all options. She is adorable.

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