A large family, homeschooling, adoption, special needs, whatever strikes my fancy, sort of blog.

A large family, homeschooling, adoption, special needs, whatever strikes my fancy, sort of blog.

Friday, June 13, 2014

One Year With Luke


China 6/14/2013

One year ago, I was full of anticipation.  My guide and I sat in the hotel lobby and waited and waited for Luke to arrive.  When they finally got there, they said he'd been sick in the car.  Right after this picture, he started howling (understandably!) and didn't stop until I got him into the bathtub upstairs.

China 6/14/2013

It was after his bath that we started getting to know each other.  I look at this picture now and see his chubby little arms and face and realize how much he's changed.

Luke has lost 6# since we've had him.  :(  I knew he'd slimmed down a bit as he went from near-constant bottles of milk to a solid food diet, but it's only been in the last month or so that I've realized how thin he's gotten.

May 2014

See how his arms and legs have changed?  His GI doc diagnosed him with Failure To Thrive this week.  We're working hard to avoid a feeding tube.  He goes back next month for a weight check.

June 2013 in China

His skin, however has gotten much better!  When I got him, he was so itchy and covered in little bites and welts and splotches.  Now, he generally has a couple bruises from head banging, but otherwise, his skin is looking good.

June 2013 in China

We still see quite a bit of this, unfortunately.  Despite more than 100 appointments with doctors, specialists, assessments, therapists, and a couple of hospital tests, we're no closer to knowing why he's so miserable.

June 2013 in China

I thought we'd bring him home and get him some help and he'd flourish into a walking, talking, laughing, fun little boy.

May 2014

I was wrong.

His development is splintered, but some areas, it's as low as 5 months old.  He'll be 3 next month.

If he has what the geneticist at UCSF suggested in February, he'll never walk.  All these months, I've been pushing him to stand at the advice of his physical therapist, thinking, "If he's going to walk, he needs to practice standing."  We're starting to feel like 'why bother?' with the standing exercises, if they just make him scream, and he's not going to walk anyway.

May 2014

I appreciate the people who've prayed for our family as we've tried to navigate being thrown into the deep end of the pool without floaties.  This has been so much more than we bargained for.  We thought we were facing an outpatient surgery (that it turns out he doesn't need after all) and maybe needing an IEP when he got to school age.  Autism, seizures, Failure To Thrive, and a host of other issues were not on our radar.

 Today

One year ago, I was full of anticipation.  Now, I'm just weary.  As I sit and listen to Luke screaming downstairs, I wonder what the future holds.  Maybe I don't want to know.  Our adoption of Hannah was so beautiful and she blended into our family so well.  Our "concerns" going into it a second time were about attachment issues and surgical recovery, not juggling multiple therapies and worrying about lifetime total care.  If I couldn't have imagined this, what other unpleasantness lurks in our future?


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50 comments:

  1. I give you a lot of credit, I too am weary and our daughter is much better off then Luke, but I expect in the near future, unless God changes things, that we will be giving her up. While she has made progress, I can not continue with the situation long term. I refuse to be shackled down forever with a child whom I am not able to help much, if at all. But I am really confident, in the right family, she will do well. My other kids too feel beat down and its not fair to them to lose their parents, forever, to a child who will take every bit of time we have. To me, its just not right to expect them to live in a home thats turbulent with her issues. We have our home on the market and hopefully we will sell fast as my desire is to move forward in getting our lives back. I have felt every imaginable feeling over this situation, but as of late it is total surrender to what is, acceptance over who she is and the determination, among utter exhaustion to take back my life, so this means I am cleaning out life and home and pruning my it all down to a twig!!! :-) And sadly, I have NEVER felt so good doing anything in my life!!!!! I hope by next year to live in a smaller home, with little material possessions and to have her placed and get back into life again! I have never felt, or looked so bad in my life. From fit to flattened in 1 year! :-0

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    1. I can relate to what you say about it affecting the other kids. My kids are tired of the screaming and starting to resent that there are things we can't do anymore because we can't take Luke.

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  2. Please don't think I'm evil to type this, but have you considered a palliative consult? If he needs a feeding tube to survive, and his quality of life is miserable, maybe comfort care would be a humanitarian option? Prior to the existence of feeding tubes, his failure to thrive might be seen as a sign that he wouldn't have to live a long period of discomfort and to anguish those around him as well. I've been following you for a while. It seems to me that you've done everything within your power to make his life better--it sounds like whatever you do, he will not "get better" because he's never been better than he is right now. Please forgive my candor...praying for you & the team, whatever happens.

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    1. I don't think you're evil. Until we have some sort of diagnosis, that's not really an option, though. I appreciate your prayers!

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  3. My heart goes out to you and Luke. It has to be hard on you and especially him with crying and all the uncertainty. Reading your story makes me just want to scoop him up and just love on him. Always know GOD loves you and HE placed Luke with you for a purpose.

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  4. My heart goes out to you as a mother of children with autism and seizures. I know a little bit of what you might be feeling. I hold you in my heart, thoughts and prayers.

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    1. The seizures are a recent development, and seem to be getting worse. : / I'd love to connect with someone more experienced in this area, if you're up for answering some questions?

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  5. My heart goes out to Luke. He needs a mother who will love him unconditionally, only then can he thrive!
    I have been reading your blog for a while, and to me it is clear that you do not have the feelings a mother should toward Luke. As a fellow adoptive mother I understand that love sometimes takes time, but it seems to me that you are not wanting the love for Luke to grow. You focus on the easy-to-love girls, good for them - bad for sweet Luke... Please give him a chance by giving him a new family.

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    1. You understand that "Failure to Thrive" is a medical term and diagnosis? It has nothing to do with emotion and everything to do with physiology. It is not a matter of whether he is loved. Physiologicaly something is broken. What makes it unusual is that it is a 2.5 YO boy who is loved, gets plenty to eat, and plenty of care. - Luke's Dad

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    2. Are you offering? You're certainly welcome to submit a homestudy to our social worker. There's not exactly a long line of people wanting to take on a profoundly retarded child that will need lifetime total care.

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    3. To Anonymous,
      I am in shock to read your comment! You say that you have been following this blog for awhile, but I find it hard to believe that you could say "it is clear that you do not have the feelings a mother should toward Luke" if you have really been reading this blog! Shecki is an amazing mom! You say you are also an adoptive mother, but I have to wonder how many children you have. Do you realize that Shecki and her husband are raising 10 children? Not only that, they are homeschooling them! Do you have any idea how hard that must be? Can you not see how wonderful her older children have turned out? Luke is not the first child they adopted either! How can you possibly say the things you did? If anyone is lacking love here, it is you, not Shecki!

      Shecki, please ignore this person's comments! They have no right to say the things they did! You are a great mom! You are the best mom for every single one of your children, including Luke! I have never faced the situation you are facing but I know it must be terribly hard. Don't let this person's negative comments ruin what you are trying to do for that precious little boy! I have had my own issues in my life with a negative person who insisted I am not a good enough mother. Those kind of comments hurt so much!! I'm so sorry you had to put up with this person's rudeness!

      I will be praying for you and your family and that God will give you the strength and wisdom you need to get through this with Luke! And that He will help you not worry about stupid comments like this one.

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    4. Thank you, Missy. I so appreciate your prayers and support.

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    5. I'm afraid that I have to agree with this comment. Are you aware of how much of your dislike of Luke bleeds into your writing? The language you use, the pictures you post,and the way you let the other kids treat him (didn't you just blow off Katie calling him a bad boy?) all show it really clearly. I think that what people like me are trying to say is that instead of hating the situation, you seen to be transferring those negative feelings directly towards Luke.

      An extraordinary special needs situation in any family is difficult, and it's probably worse when you don't have a diagnosis to properly understand and guide the situation. It's hard on the entire family, and sometimes you have to make the difficult decision to place the family member in an institutional setting. But I think that until you work out your own grief and anger, hopefully with a therapist, you're going to continue to struggle with loving Luke, and it's going to continue to be obvious to some readers how you feel.

      My heart goes out to both of you, and I pray that you find an easier path in life.

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    6. What? Katie hasn't called Luke a bad boy. Are you referring to the One Year With Katie post where I laugh about her calling SAM (not Luke, SAM, who is 15) names? They were teasing each other, and that had nothing at all to do with Luke. If you mean something else, please explain, because I'm confused.

      How are the pictures I post of Luke different than the pictures I post of the other children? Because I've posted pictures of him crying? I have also shown Katie crying, and Hannah, too, I think. Luke is very hard to photograph. I've taken hundreds and hundreds of pictures of him, and it's tough to even get him looking in my direction and not crying at the same time.

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  6. Hugs - until someone walks the journey of a screaming raging child who you have spent countless hours trying to find a footing and direction then they have no room to judge. 2.5 yrs later our other kids are weary, so are we. Know that pray for you all often and pray for clear cut answers. ALthough we are not at the place of dissolution yet, I now truly believe that some families are used to bring these kids home to their forever families.

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    1. Thank you. I follow the blog of a family who is the re-adoptive family of a special little guy, and I see how happy they are with him, and how they celebrate his little milestones, and I think you're right. Sometimes it IS better for a child somewhere else. Hard, hard conversations.

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  7. It has nothing to do with unconditional love, I agree! A raging child all day does nothing to forge a Mother/child bond. She obviously loves kids and gives so much love to ALL her kids. What more can she possibly do, give her attention to him and forget the rest. I agree she could find him another family but its up to her to make that decision!

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  8. Reading your blog I'm always impressed with the honesty with which you speak about parenting a child who is not how you expected, who doesn't/isn't able to express gratitude for his care and who spends a lot of his time it seems very unhappy without anyone being able to work out why, which must be extremely distressing as parents.

    Lots of people won't have the courage to speak out and so others suffer on in silence, struggling with raising "difficult" children and consumed by guilt that they are the "only" ones who feel resentful and beaten down by their lot. Children are "supposed" to grow up, to be independent, to move on. Dealing with the fact your child won't do that is a huge burden especially combined with caring for a child with high-level needs.

    To suggest a severely developmentally delayed child doesn't "thrive" because of their mother is incredibly hurtful and also untrue. I'm perfectly willing to introduce anyone that thinks that to the parents of children with genetic disorders that delay development and cause failure to thrive- I somewhat doubt anyone would say that to the parents faces that it is a lack of love that is stopping their child from "thriving".

    Making another human being is complex. To be sitting here typing this to you all, tens of thousands of things have gone "right" with my genes. Even one error can be devastating. And it cannot be fixed with "love".

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    1. Your sympathetic response brought tears to my eyes. Thank you.

      I wish I had run across blogs while we were waiting that talked about the challenges of really hard to parent kids. Everything I read was unicorns pooping rainbows, and I think that contributes to the idea that "love conquers all" and if you just love them enough, it will be okay. I hope that by being real I can let other PAPs know that it *doesn't* always end all rosy and wonderful.

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    2. "Unicorns pooping rainbows" That's why I love your blog.....you're REAL! THANKS FOR BEING TRUE! !

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    3. Even Paul grins when I say that. ;)

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  9. possibly there is another family that will be better for him. Not because you and your family are not doing good or not doing right or your best. Sometimes your best is not going to ever be enough and that is not because you are not enough. It's because at that point and time you are not the right matches for eachother. Possibly he will do better in a group home and possibly in a home where he is the only child. Possibly there is no place he will thrive and what he needs is comfort and help dealing with his life.
    I've seen many children with genetic disorders as a pediatric specialist and it's hard on every family. Some children get to a point they barely know someone is there and others scream even as their parents desperately try to comfort them. They are trying and it tears them apart. Some keep trying and others become bitter or try to find moments of escape in the hope of hospital admissions. They are all trying to cope with the difficulty of a child who stresses out the family dynamics.

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    1. If nothing else, it's certainly opened my eyes to the lack of relevant resources for special needs families.

      It's actually somewhat comforting to realize that even bio parents of severely affected children struggle and burn out.

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  10. I am so sorry to hear how hard this has been, Shecki. My heart goes out to you, and I am praying.
    Samantha

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    1. Thank you. Some days I think it's everyone's prayers that keeps me putting one foot in front of the other.

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  11. You're right, he does look thin. I wonder if all the bottles he had in China were to keep him from screaming all the time and the calories masked his feeding issues. Will he still drink from a bottle? Perhaps some Pediasure will help until you have more information. It's expensive, but it put some meat on my skinny girl. I just had her on it again for a week since she was looking thin again.

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    1. His GI doc prescribed 2 bottles of Pediasure/day. He doesn't do a bottle any more, but he's taking it by cup and by straw.

      Paul thinks the increased seizure activity is burning a lot of calories and contributing to the problem. It's probably a combination of factors.

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  12. I love you and your family. I'm so sorry that you're going through this. You can count me among the friends that are not going to judge you. I have had enough experience that I can at least begin to imagine how difficult this must be for you. Prayers and blessings to your family.

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    1. Thanks, Jennifer. How are the babies? I haven't even seen them yet. :sigh:

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    2. They are doing well... threatening to walk any day now, at less than 9 months old. :P They are growing up so fast! Thanks for asking. Take care! ~Jennifer

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    3. Oh my! I had one that walked at 9 months, and it was scary to keep track of him. They don't have enough sense to keep out of danger that early.

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  13. As a mom of two severe special needs kids (and other kids, too), I get your frustration and the effect of Luke's needs on the family. I've been following along on your journey with Luke, and I know it's been a difficult one. In no way do I mean to be judgmental or insulting, so please don't take my words that way. But maybe what you and Luke need is TIME. Perhaps you should spend less time blogging, reviewing products, homeschooling, taking photos, etc. and breathe. I know my household reflects my state of mind. My kids are especially affected, and they get frustrated, stressed, tired, etc., when I do. If I take on too much, they show it in crying, fussing, and just being miserable. Perhaps Luke's fussing and crying is a reflection of his taking on your frustration? He is obviously one unhappy little boy...is that a reflection of your being too busy for him? You shouldn't have to give up your life when adding a child to your family, but special needs kids sometimes require us to give up things in order to meet their needs.

    As far as the failure to thrive dx, I think he looks like a healthy, growing boy who has gone from a chubby baby to a growing toddler. Sounds like maybe they did stuff him with milk to keep him quiet. He is losing that baby look, as all children do.

    Please understand I am just being honest, as you have been about your feelings for Luke.

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    1. Homeschooling is part of our family culture, and I'm not going to give that up. Certainly not for a child who may not even benefit from additional time.
      Luke doesn't even *like* people messing with him. He generally screams through entire therapy appointments, because he'd rather be left alone. If it was a matter of him being happy when held, I would hold him. But that's not it.

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    3. ar anonymous, I would have hoped as a special needs mom you would have known better. Are you serious??? I am also a mom of adopted kids, severe special needs, and I know this family personally and I can confidently say you have absolutely NO IDEA what you're talking about. You may feel like you're "just being honest" but you're honestly just being judgmental and drawing conclusions so that Shecki's experiences can fit in your own box and you can feel better about life, at her expense I might add. And do you really feel qualified to make a determination on his failure to thrive status based on some photos and your own general notions that he looks okay to you? Do you understand what actually goes into receiving a failure to thrive diagnosis or how utterly unhelpful comments like that are? You should know better!

      We have NO idea how other people really spend there time and there is no way to determine that through a blog. In a blog, you see the things Shecki does do, but you don't see the things she doesn't (or other things she does). In fact you probably only get about a 2% view of her real life, that's kinda what blogging is, you don't see all the things Shecki and her family give up, that you probably don't. Shecki has the deepest mother's heart of anyone I know, and if simply putting on a cheerful smile and more attention she could help Luke not cry for literally hours each day, SURELY, as a deeply loving mother of 10 she would have figured that out in the first week. Besides if you could just boil things down as simply and insultingly as you did for Shecki, how would you explain the difference in how her other children are doing??

      Shecki gave a very kind, leveled response, I for one am mad, I'm mad for her, and mad for all the other future special needs parents I hope you think twice about judging next time. You really don't know unless you are in someone shoes. And as much as you'd like to think you are, you are not in her shoes at all.

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    4. Thanks, Ashley. I've always admired the strong and graceful way you've handled the surprise challenges that came with your girls. I feel like you really get what we're going through. Your words mean a lot to me.

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  14. I have a SN child and have entirely eliminated everything to take care of my childs needs, and I am still stressed, so whats my excuse? I dont do 99.9 percent what Shecki is doing and I barely manage my day, and I dont even have a blog! I read a few peoples experiences a day, literally no more then an hour each day to try to help me make sense of my own reality. I am sure she could find more time in her day to relax and do more to take care of herself as anyone could, but, I absolutely do this for myself, but still at the end of the day, the issues and demands of my child still feel like a 10 ton weight over my life and that of my families. And that isnt going to change if I do x y z, its still there looming day in and day out! The reality is when a person adopts or has a bio child and the life they "signed" up for particularly with adoption, picking a specific need and that need NOT be remotely what was in their file, then what? Some people just know themselves very well, what they can handle, etc and If put in the wrong circumstances struggle immensely with where they find themselves to be. Many of those same people with the Grace of God do eventually work it out, but many others will continue to go downhill and watch the very fiber of their lives being forever altered and destroyed. Its not the strong that survive, but the weak, the ones who have clarity of mind to know what they can and can't handle and with great love and humbleness give the child, whom they do Love, even if that child can not return that love, ever...to a family who can care for AND handle them. This is why their are many types of adoption and their always will be!!!!

    Each and every person who is in the process of adopting hears, its not for the faint of heart, which I find a joke, because as a believer, every human can and will faint at rough times in their lives. Some will ride through, like me through major and numerous surgeries as if it were a scratch, and be out of a hospital literally in 48 hours and a lady next to me going through the same thing, struggles so badly for weeks and months what for me was a minor inconvenience. And yet I am sure if I compared that same lady with me in another area of our lives, She would be riding through what I consider hard. Its just the way it is, God created each of us to handle our lives, individually.

    For those of you out there saying, just pull up your big girl panties, I just love that phrase...seriously? I mean, really? We CAN'T compare the way WE react to the way someone else does, its ridiculous, because the person isn't you or me, they are themselves and can only worry about how its affecting them. What Shecki does in her life to relax, decompress, etc is HER decision and how SHE feels, or how I feel or even how YOU feel, is specific to each one of us!

    I think when we respond to anyones blog, we need to keep in mind that we are only hearing what she writes and may have a different opinion if we were sitting in her living room, hearing this womans heart and what SHE is struggling through. She is openly showing her weaknesses, as the proud and strong, would never do that, for that alone, she has my deepest respect. Shecki needs to see that her pictures of her with Luke in China show The utter excitement in having him placed in her arms. And you know what, she IS guilty, and her only sin is loving TO much, why Jesus hung on that cross too! For love! But even that wasnt enough for some!!!

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  15. For those people who say to "pull up your big girl panties" remark...whoever came up with that comment, what are we 3...heres the REAL deal!

    PANTIES ARE NOT ONE SIZE FITS ALL! Ladies try squeezing into the wrong size or worse yet, wear those underwear Granny's wear! They will fall down! Instead, wear your own size!!! Be you, the One GOD created you to be!!! I heard a pretty well known adoption advocate, out there tallk about the "faint of heart"... Again how could I profess to follow God and believe this to be true about life or adoption. "fainting" in the spiritual world is a good thing, it shows OUR reliance on God. Without our trust in Jesus, NOTHING works or exists... So Faint away, God is there to catch us! For anyone out there saying those phrases and actually believing them. Dont be deceived into believing you can do anything without God! God designed underwear to fit and he designed himself to fit us, so that pride and self-reliance doesnt give us a false sense of security. Security, our problems, our very lives are all in the Hands of a God, not our own!!! So instead give up the silly phrases intended to make women feel inadequate and instead be humbled that God cares so much about us, that he will be there for us in the good and the bad and we dont need silly phrases to help us through the difficult times!!! I mean, give it up already, those comments just sound plain weird! :-)

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  16. Shecki, I have been reading your blog for over a year and following this journey. I so wish I did not live on the complete opposite coast! I would love to come watch Luke so you could get out and enjoy time with the other kids and do some fun things to give everyone a break (or even to take some alone time for yourself!). I also wish I had the ability to reach through the computer and whack some of these "anonymous" responders upside their head! They are cowards for not signing their name and do not want to reveal their true identity because then we might see the flaws in their lives.

    I have "seen" the tiny bit of this journey you are living and know that you are giving your all to Luke and still trying to maintain balance with your other children. You do not have to completely lose your identity and give up everything for one child. You clearly LOVE Luke and are trying to give him everything he needs but NO ONE clearly knows what it is that he needs.

    My mom worked 30 years at a facility for severely mentally/physically handicapped people with the same issues Luke is struggling through and I know the task is NOT easy. I know you can give 110% and still come up short. Everyone always says give it more time and time heals all things but time does not heal all mental/physical challenges and it is a lifetime battle.

    You are doing a fantastic job! I admire the strength that you have had to walk this journey! May God continue to provide you with strength and support as you make your way through this maze of trials!

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    1. Thank you! My FIL worked with mentally challenged people, too. I admire people who can take that on. It's not a path I would have chosen. Luke's therapists, too, are amazing ladies.

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  17. Dear Shecki , I have read a few of your blogs but in all honesty have not followed closely , but than I stumbled on this one! As a mother of 2 adopted daughters from Russia I am appalled at some of the comments . Some people want so much to share their misguided opinions and I find them to be arrogant and judgmental at the very least. Your honesty is refreshing and needs to be spoken especially for those who are considering adoption. I believe adoption is a calling from God and you better make sure your hearing his voice when you decide to tackle this very challenging life decision. I know you heard that calling and there will be days you question that , especially on those extremely difficult days when you might feel like " what have I gotten myself into" Both our girls had attachment issues. Emily had far more medical problems, she came to us with failure to thrive and FAS, and a myriad of other problems. She cried daily sometimes for hours ! And there were days I thought I would just like to hand her to the mailman and walk away. We spent countless hours at specialist some of those days were just a blur because I was overwhelmed. Than we got Anna who was ten spoke no English and we began a much different roller coaster . At ten she had so many attachment issues and took
    Most out on me her main care giver. But.... What kept me going is I knew we were called to do this, if I didn't have that to fall back on I think I really would have lost my mind. Emily is 21 now and struggles with bi polar and certain developmental delays. Right now I think she will always be with us, but I do know God will take care of her. Shecki continue your blog and honesty I wish I had a blog to read when we were struggling so. God bless all of you and May God continue to equip you to face the challenges in the future.

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    1. I didn't realize Anna was 10 when you guys adopted her! Does she remember any Russian now? Have either of your girls expressed an interest in visiting Russia someday?

      Thank you so much for your encouraging words. It means a lot coming from you.

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    1. Although you deleted your comment, I received it by email. You had some valid points. But things are not entirely up to me. I hope you can understand that such a decision is very complex. We've obviously had, and are still having, tough conversations. Yes, we're thinking of the other children, whom I love fiercely. My feelings were hurt when you called that into question. But overall I see that you are concerned for Luke, and I cannot fault you for that.

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  19. my only question would be "if this was a biological child would be be feeling the same way and give up on them"?

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    1. First, define what you mean by "give up on them" please. I'm still the one feeding, changing, bathing, advocating, scheduling appointments, etc. for Luke.

      Second, well, no. This WOULD be different if I had given birth to a child, bonded with him, and gradually come to realize they were not meeting milestones. Further, with a bio child, he would have gotten the best possible nutrition right from the start, and not been exposed to the same environmental toxins in utero. He would have gotten early interventions much younger. So, depending on what Luke's condition actually IS, it could have been very different, indeed. But I assure you, I would still be grieving and still feel overwhelmed. I did not bond well with one of my bio kids during the early years, but was able to overcome that eventually, and we have a sweet relationship now. We also went through a rough patch with one of our kids where I was ready to send them to boarding school, so I guess that would be "giving up" on them, too? (That situation has since resolved, thankfully.) I'm not perfect. I get overwhelmed and frustrated, regardless of where a child comes from. I'm sorry that disappoints you. If you have a large family and special needs children, maybe you have some pointers/tips for how you keep it all together and avoid burnout. I'd love to hear them.

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    2. I never once said I was disappointed, I just asked a question. I think we will sign up for adoption we should realize that there are ALOT of unknowns and we should expect that those children did not get the early love, intervention and care that a bio child receives. I think the biggest thing that would help is to talk to someone about how you are feeling in a safe environment. The internet and blog is not really a safe place. When we returned with our special needs child I had alot of problems myself, alot of my hopes where shattered and my expections where incorrect. Our agency was tons of help. I would check to see what types of postplacement services your agency provides. Another helpful thing for myself was to just go and talk to my pastor, really all he did was just listen and allow me to get everything out in a safe environment. I wish the best for you.

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    3. Our agency is across the nation from us, aside from a phone call, there isn't really anything they can do. Thank you for your kind wishes.

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