Tuesday, November 7, 2017

Even in the Hard

What do you do when you're stuck in a cold foreign capital, waiting for a passport that refuses to come? One thing we tried was keeping a seizure journal for Mary. We started strong on Sunday morning, intending to record every one of Mary's seizures and its time so that her doctor would have more to go on.

Seeing it on paper made us realize just how out of hand her condition is. She had six seizures in the bathtub, one while drying off, several while getting dressed, and four more at breakfast. By the time she finished breakfast, we decided her journal was full enough for awhile. We don't have time to record seizures when we are trying to keep little girl safe!  We're in survival mode here, pure and simple. We have a decent video of a typical seizure, and that will just have to do. 

We are trying not to feel desperate about the passport. We know our facilitators are doing all they can. They have made many phone calls on our behalf, and even went to the office in her region to make a personal plea. All for naught, so far. All we can do is wait and pray.



Another thing we've tried is taking long walks. We thought we scored big yesterday, when we happened upon a nice little playground. Little girl loved it when we put her restraint on the swingset so she could enjoy the swing.  The joy on her face was priceless.

Then she decided she wanted to climb on the jungle gym. Of course it wasn't for children with special needs; and of course it was the dangerous kind with bare metal jutting out everywhere. Just looking at it almost sent this Mama into a full-blown panic attack.

We did everything we could to keep her safe. I handed her up to Rob, and he followed her around with a firm grip on her the entire time. When she came down the slide I was at the bottom to catch her. It was a good system. Scary, nerve-wracking, but good.

That is, until little girl reached the bottom of the slide and got tangled up with Mama. Not because of a seizure, just because. We both went down. All I could think about when we landed was that she was going to be hurt, and it would be all my fault.

Fortunately, Mary was fine. Me, not so much. I'm now sporting an ace bandage on my wrist and trying not to think about how much it hurts. Thankfully, nothing was broken but my heart. We tried extending our walk after we left the playground; but it was too cold, and our hearts just weren't in it. So we limped our way back to the apartment, feeling defeated.

We covet your prayers right now. Not only for her passport to come, but also for answers to her seizures. We know that the medication we are giving her right now is not at all effective. We are desperately praying for answers. We are spending hours researching and learning all we can. We cannot wait to have her evaluated by those who are wiser and more knowledgeable than we!



Aaron and John are hanging in. Aaron is longing for home, but emotionally doing as well as can be expected. John is John. We find ourselves in the same trenches here as at home. Mary is drawn to him because he is closer to her size and emotional maturity, and knows more of her language. We are praying that in the long run, he will strive to be a good role model for her.

Hoping today will bring a passport and an exit plan.

Grateful that even in the hard, even as we are limping and struggling, that the Lord Himself is with us. In that lies our peace.

We close this report with a plea to the plumbers of this country. If it's not too much trouble, then could you please get together and decide whether the hot water goes on the left or right? We don't care which, as long as you choose one. If not, then could you at least make all the faucets the same in the same apartment?

15 comments:

  1. Praying dear people. Praying.

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  2. Oh my goodness. I had no idea she was having seizures SO frequently. Praying for her passport and your travels home asap. May God give you all peace and comfort in the waiting.

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  3. Dear Julia, Rob and kids. I check your blog every day for updates. Thank you for being so honest about your journey and allowing those of us who read your writings to follow along. Such a gift you are giving all of your children. How are your big boys at home doing? I pray for you as I read your blog and throughout the day whenever I think about you. Our international adoptions have all been from China, which has quite a well defined time line. I cannot imagine the uncertainty and resulting frustration and discouragement of just not knowing. I will pray for a speedy resolution to the delay in passport processing.
    In Christ's love, MayLynne

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  4. You'll be home soon and everything will settle down. ☺

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  5. You know, it occurs to me that Mary must be an absolutely brilliant child, to do as well as she does in the face of constant, unrelenting seizures. Once they are under control, she is going to fly. I am so thankful you are giving her (as with Aaron and John) wings.

    Meanwhile, have you tried altering her diet as some suggest to try to lessen the chance of seizure activity? Not easy at present, of course, but might be worth a try.

    Prayers for a quick solution and a rapid get-away asap!

    Susan in Kentucky
    Cousin to 2 from U.

    p.s. Have your trio take a look at the "Cats of Instagram" site for lots of cute furry friends doing lots of endearing things. Good time-passer and spirit lifter!

    Oh, your poor wrist! I hope you'll get it checked out if it's not better in a day. Wrist injuries can include "jammed" wrists as well as fractures and worse - or can be just simple strains. I hope yours is in the last category.

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  6. Just remembered and checked out the American (Public) Library in Kyiv - they have free kids' and adults' programs for both Ukrainians and Americans. See their Facebook page for more info - search for "american library kyiv). I have no idea how close it is to you, but the children might enjoy some of the programs and it would be an opportunity for you to connect with fellow Americans.

    Susan in Kentucky

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  7. There's also the National Library of Ukraine for Children - beautiful place; might be a good place to visit. They offer have lots of free programs for kids almost every day. Again, not sure how close it is to you but there are directions to the Bauman Street location on their website. It seems to be close to a metro stop...

    Susan in Kentucky
    Children's Librarian emerging from retirement! :-)

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  8. Thank you for sharing your adoption journey with us and thanks for all you do for orphan advocacy. I found your blog when you were in process with Aaron and have been a follower ever since. I pray you will soon be home and will find answers to the seizures. I receive e-mails from an organization that works with children with special needs and a few months ago I received an e-mail with a link to this hopeful sounding article about seizures so I thought I would share it with you in case the program could help Mary. They also have several videos about how parents can help children who have epilepsy. Here is a link to the article: https://iahp.org/epilepsy-life-long-disease-merely-symptom/ I know that another RR family has used a program from the same organization for brain enrichment/development for their children with Down Syndrome. It was Sophia Sanchez's family. It was through their adoption blog that I learned about RR. Here is a link to their family blog where they talk about their experience with the program http://supersanchezsix.blogspot.com/2008/07/back-from-philly.html And here is their adoption blog that introduced me to RR http://savingsofia.blogspot.com Please do not feel obligated to make this comment public unless you want to. I just wanted to share this resource so you can research it if you wish in case it can help Mary. God bless! Pam

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  9. Praying for you during the long, hard, and cold days!! A year from now this will be a memory and much will have transpired. God is faithful. He sees your heart. Thanks for being REAL! Its helps all who are in the trenches with adopted children and all those who are going to take this journey. Love you!!

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  10. Oh Julia, I hold you in my heart! ONLY YOU could end this post with a plea to plumbers! Thank you for sharing this journey with us; it teaches us God's persistent care and how to be His persistent people. It hit me that perhaps He is revealing something to Aaron and John about the lengths you went to in bringing them home to you...beautiful layers laid down in their hearts. Sending love, and praying...You are not forgotten way over there! Love Kelly M

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  11. I saw a documentary a year ago and then found this youtube video about the same thing and just thought I would share in case you had not heard about it. I have no idea if it will help or not and you may have heard of it before so just throw it to the side if you don't need the info :)

    https://www.youtube.com/watch?v=oxrKyjeClTk

    https://www.dinafem.org/en/news/illegal-documentary-brazilian-mothers-cannabis/

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  12. Dear Julia,
    I just want to let you know, what I also pray for Mary, for her heart and for you all.
    I'm from Ukraine, live in Germany, and I'm very sorry that I'm not in Ukraine now and cannot come to help you.
    I also wanted to adopt your "Harper", after you (which was not possible - but the Lord had a much better plan for her).
    And I'm so thankful, that He also has a perfect plan for Mary, and you way to this girl is a wonderful and encouraging testimony!
    Natalia from Berlin

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  13. Prayers for you all ❤❤❤
    Colleen

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  14. Praying for your family and that you will get her passport soon.

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  15. Your children are all very precious! Praying for healing !
    Kate Germany

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Loving words from kind people make our hearts glad!

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