Wednesday, May 22, 2013

Time and Love Are Not Always Enough


I've been mulling over this post for over a month now, and I'm finally sitting down to give it my best shot. I struggle with what I post because as you know this blog is public and the whole world can see it. You all get glimpses of our life with three beautiful daughters with Down Syndrome, but obviously I don't share everything! In the end (so long as I hit publish) I decided to write this post thinking maybe it would help another family who may be in the same type of situation. The things I decide not to share are for the privacy of our children, and I always write keeping in mind that my girls will likely read these blog posts one day. I never want to say anything that would hurt them.

It's definitely no secret to readers of this blog that Zoya has always struggled with anxiety, as long as she's been a part of our family, and without a doubt, I'm certain she struggled with it during her orphanage days. What will "fix" this anxiety? Time and Love, Time and Love, Time and Love, right? Time and Love have made a world of difference for Zoya, there's no doubt about that. She's made SO MANY STRIDES in the three years she's been home. She has far surpassed many goals that others have set for her and raised the bar on herself many times! She is so very smart, and friendly, and loving, and one of the most amazing souls you'd ever meet. But as we inched toward her "three years home" celebration, it was time to face the fact that time and love were not enough to "fix" her completely. Time and Love could not completely take away Zoya's anxiety. Time and Love taught Zoya that she can trust her parents. Time and Love allowed Zoya to become more confident and improve her self-esteem. Despite all that, Time and Love were not enough to take away the anxiety that, many times, ruled Zoya's (and our) life.


Over the past 3 years we've struggled right alongside Zoya with anxiety and fear that paralyzed her at times. Yes, every child has fears, but this went above and beyond what was typical for a child her age. Things like fear of indoor trees and plants, fear of stuffed animals, fear of chairs....each and every fear we came upon, we worked through and continue to work through.  The intensity of her reactions was so out of proportion to the trigger. Anxiety began ruling our lives. It was more stressful than we allowed ourselves to believe. It had just become such a part of Zoya that we just dealt with issues as they arose. Maybe people who know us would be surprised to learn of all this because we just began adapting life to avoid triggers, or using 100 exhausting strategies to curb her anxiety in public. Those that know Zoya well though, would agree that she struggled with anxiety.

Over and over we tried to figure out the reason for this anxiety and these fears. Having no birth family history, we have no idea if there is a family history of anxiety disorders....so it's quite possible that may play a role. I strongly believe the Lord put us in a position to see things during our adoption of Zoya.....things that still wake me up at night.....images of children being violently abused....an image of a sweet tiny boy having his head beat into the wooden floor repeatedly.....children from her very own groupa....at the hands of the very same people we had to hand Zoya over to at the end of our visits (taking a break to bawl my eyes out here).  I know the Lord let us see those things so we could better understand Zoya (once we came to terms with the fact that Time and Love wouldn't just magically make all the anxiety melt away).  At the time we didn't understand why the Lord would allow us to see those things that would forever steal a piece of our hearts. Now, I'm certain we saw those things to be able to better understand the root of Zoya's anxiety diagnosis. Looking back on any of the pictures from Zoya's orphanage, you can see many many indoor plants and huge stuffed animals-two of her fears. I can only venture to guess why she was so terrified of sitting in chairs for the first 6 months home. The point is, I know in my heart that Zoya's traumatic past shaped her brain in ways that can't always be undone easily (or ever). Coming to that realization is not very fun. It was a lot easier (and naive) to just believe that Time and Love would fix it all.

We worked tirelessly to try and help Zoya with her anxiety. Shawn and I sat down and wrote a list of all of Zoya's anxiety triggers and strategies we'd used to try and help her and it was then that I realized her anxiety was taking on a life of it's own. Several months ago, we decided to seek out professional help (we had seen a child psychologist in the past, but at that point we were still under the impression that Time and Love would be enough to make it all go away). We found an awesome group of professionals (therapist and psychiatrist) who took the time to get to know Zoya, listen to our concerns about her anxiety, and come up with a plan to help her. Zoya was officially diagnosed with Anxiety Disorder. While this was a huge relief (knowing we weren't crazy), it also made us so sad. Nobody wants their child to struggle, and clearly Zoya was continuing to struggle with anxiety daily. Actually hearing the diagnosis out loud didn't change Zoya, it just confirmed to us that Time and Love did not take that anxiety component away from Zoya. It made us so sad to know that she had to struggle so much with debilitating anxiety.


Zoya has been able to work through specific fears and overcome them, but it almost always seems that a new fear arises in place of the old fear that she overcame. She made huge progress during her dance season with strategies such as deep breaths, headphones, social stories, etc. BUT, the anxiety never went away. It manifested in other ways. To see your child acting hysterical at the sight of a gift bag with a stuffed animal sticking out is both maddening and just plain sad. Maddening because I just wish she could turn off the anxiety, maddening because she was freaking out over harmless (in my mind) stuffed animals, indoor trees, etc. And sad because what child is so afraid of stuffed animals that they cry and shake and pace for 45 minutes after seeing the thing? I know I'm not doing a great job explaining all of Zoya's specific fears that come along with her anxiety, but that's not really the point of this post. The point is, her anxiety was so bad that it began really interfering with daily life for her and for us. Sure she had many great moments throughout every day but we never knew at what moment the anxiety would kick in and take over. She was being held captive by anxiety.

The therapist and psychiatrist both agreed that the intensity of Zoya's anxiety was too high to benefit from most strategies that are typically used for children with anxiety. She couldn't even begin the Gradual Exposure process because the intensity of her anxiety was so high. Her brain had been setting off false alarms telling her she was in danger so long that the thought of facing some of her fears was enough to cause huge anxiety. That, paired with her developmental delay, made traditional cognitive behavioral strategies more difficult and less effective for Zoya.


Part of the treatment plan they suggested was medication. If you know me at all, you know (even though I'm married to a pharmacist) that I'd prefer not to use any medications on myself or my children unless I've tried everything else first. I'd prefer, especially, not to use this type of medication on my almost-5-year-old. The thought made me crazy. We looked back over the pages of strategies we'd used that we wrote down. Please don't leave suggestions for how to help with anxiety naturally (believe.me.when.I.say.we've.done.it.all!!!!) I tried to convince myself that her anxiety really wasn't so bad that she needed medication. But all it took was a single episode of her anxiety to remind me that this WAS a medical condition that was causing Zoya's quality of life to be impaired. It was our job as her parents to do everything we could to give her all the tools she needed to have the best life possible! So nervously (and after much research and consulting other parents who've made the same choice for their children) we made the tough decision to try medication. I definitely cried as I gave her the first dose.

The difference it has made for Zoya is miraculous. She is on the teeniest tiniest dose, yet it turns the intensity of her anxiety down so much that life has been much more enjoyable for her. We learned that a little bit of anxiety is a good thing (haha) and until we got the dose right, we had a fearless and frightening 4 year on our hands). Her confidence has soared. Her anxiety is not gone, but many days go by where I forget that it was ever such a huge issue! It makes my mama heart so happy to see her interacting more, exploring more, enjoying more. I'm not saying this is the answer for every child in Zoya's situation, but I can confidently tell you that it has improved Zoya's life greatly! Has it taken away her anxiety completely? No, only the Lord can take away her anxiety completely, and I have no doubt He is fully capable of doing that, but it has made a world of difference for her!

I know by posting this we'll face critics, but those critics don't know our child, and it's not their job to make decisions for her, so those people don't matter. It's my hope that this post might help other families in the same situation, and to give you some more insight into what an amazing child our Zoya girl is and how much she's overcome!

Dance, baby, dance! 

31 comments:

  1. I'm so glad to hear this!! I know what you mean about medication, but glad you tried it. Samantha has an auditory sensitivity. I thought for sure she'd outgrow it, didn't want to get headphones for her because I didn't want her to use them as a crutch and start becoming reliant on them. However, one day the freak-out in public was enough, was one time too many, and I went home and ordered a pair right then and there. They've been an absolute life-saver, allowing her to enjoy many of the activities we had previously had to avoid because the sounds were so overwhelming. And she doesn't use the headphones as a crutch, she uses them when she needs to. And I feel bad that I hadn't gotten them sooner, but at least now we can move forward. :-)

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  2. Thanks for posting, you guys are awesome parents. I can't wait to see a 6 month update to this to see how far she has come!

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  3. I truly believe that anxiety is not something you can understand until you have lived through it personally or through a child. I am also not a "medication person" but after my daughter's near-death birth and 8 weeks in the NICU fighting for her life each day, I went home with Post Traumatic Stress Disorder/Anxiety. I made it through that time and was able to care for both of my daughters only through medication and our Lord's helping hands. As parents we should support each other in knowing that we each have to make difficult decisions about what's best for our children and families. Judgement should not be a part of our vocabulary. Sending love and support from Montana.

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  4. I love you and I love this post. I'm so proud of you.

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  5. Praise the Lord! What a victory! So happy for you and beautiful Zoya!

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  6. No complaints from me. My daughter has fetal alcohol syndrome and ADHD extreme. The Adhd was so extreme that it interfered with her learning things. I put her on medication with for it and it helped her so much to learn and to help with safety. No one wants to medicate these children but when the issues interferes in their lives I am for it.
    Glad it is working well for you!
    Pat

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  7. I am so proud of the parenting you and Shawn have done with all of your daughters. They are quite possibly the Most Loved Little Girls in the world! I congratulate you on stepping out of your comfort zone and trying a medication that has helped your Sweetie! I look forward to seeing her grow into a relaxed little girl. Hugs ~ Jo

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  8. Good for you! If someone wants to put you down for helping Zoya then you should just delete the message! This is Zoya's story and in that story random blog readers are not the ones that can tell you what to do and what is best for her.
    Im so happy for Zoya and for you. Im glad you decided that she could benefit from medication and that you have seen a positive outcome

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  9. I never comment on blogs, but I just wanted to say that I think it is great you found something that is helping! Anxiety medication has changed my life. I know from my own personal experience that it is not easy going on medication. I do not have children but I can imagine it is especially hard giving medication to your child. I hope you do not get any critcism on here, because you know Zoya best, she is your child, and you are doing what is right for her. Love the pictures, keep dancing Zoya xoxo

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  10. Sarah and Shawn... you rock. Really you do. I know exactly how you have felt and feel. I've been there and still am dealing with Harry's anxiety. But to see Zoya come alive and be able to live and function is so much better than letting her suffer through the anxiety.

    I can't even let my mind go there with what you have stated about the orphanage. :-(

    Everybody has their opinions, and remember that's all they are. You know your child. Be strong in your decisions knowing that you are doing everything possible for YOUR child. Bravo to you.

    Hugs
    Wendy

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  11. I think you have done everything right as far as Zoya is concerned. No critic here. Precious girl dealt with so many things seen and unseen, and as you said, who knows what was already hard wired in her DNA from her birth family. It sounds as if you exhausted every avenue prior to turning to meds, and even if you hadn't, I would not be criticizing. Helping Zoya live her life without intense and paralyzing anxiety is exactly the right thing to do. Meds, no meds. There are some people who really just need the medicine intervention. If it means her life is more peaceful and happy, then God bless you for seeing that and doing what was necessary. Sorry. I am repeating myself over and over, but I just want to say Have Peace Momma. You have taken the best care of Zoya.

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  12. God bless you and Shawn as you work with therapists and psychiatrist's to help your Zoya.
    You wanted her to enjoy life and overcome her fears and you got help for her. I pray the day will come when this will all be behind you. Your 3 are beautiful girls. I love seeing their pictures and seeing them together. How sad that so many are left behind and will never know the love of family. You have 3 who know family, love and that there is a God who loves them. Keep up what you are doing and may God richly bless your family.

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  13. Well done, Mama - for recognizing the strength of the problem, for trying whatever you could, and for admitting that it was beyond your capacity to heal. There are times when medication makes the difference - and for Zoya, as well as for the whole family, this seems to be the answer. Well Done.

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  14. I'm so happy for you and your beautiful zoya that you were able to find something to "take the edge off". Anxiety really can be debilitating. How wonderful that your sweet girl can now take a deep breath and just let go a little bit at a time.

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  15. I have read your blog since before you brought Zoya home. She is just precious and I am so glad that the medication has made her life better! Love reading about your girls and seeing the pictures. I prayed as you brought each one home and prayed for Mila during her surgeries. Love your blog!

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  16. Aw, Sarah, I can hear your pain on behalf of sweet Zoya in your words. I can imagine how hard it must be to see your child so distressed and anxious over things that to most of us, are no big deal.
    It breaks my heart to read what you guys witnessed in the orphanage and I know it was only with God's help that you were able to hand Zoya over to them at the end of each visit!
    I have said before in my comments how Zoya just touches my heart and makes me smile every time. There is just something about her and her precious spirit!
    As her parents, you guys know what is best. Please continue to trust your good instincts because they have served all of your girls well!
    And for what it's worth, I think you did what is best. If things change for her down the road and you all feel it's no longer needed, that's great but if not, let that be okay too! Lori

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  17. I am so proud of you, Sarah! You are the best mommy and I am blessed to know you. Good job doing what's best for your babies.

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  18. Sarah,
    Your family is amazing! Thanks for sharing the realities of life with children who were formerly institutionalized. My daughter Nina has been home 2.5 years from India, and like you, I knew her behaviors were not "typical". I have two older kids, 11 and 15, and while they too were adopted internationally, I never felt that same level of concern before adopting my youngest. We have just begun a trial of medication for ADD and it has made a world of difference in her life. You know your child best and will do what is best for her. I do love reading about your girls, they are adorable.
    Carole

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  19. Congratulations on this next step you have found in order to help Zoya be all that she can be! From having read your words and seen the pictures of her on this journey, there is no doubt that you have explored every avenue out there before adding medication. Poor Zoya, makes my heart break to think of what she must have endured and how hard she has worked to overcome her anxiety issues since being home. Praying that this new path will be the next step for Zoya to continue to blossom into the awesome little girl that I see here on this blog.

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  20. I continue to praise God for sending just the right parents for all of your girls! He knows you will always choose what is best for them! (((HUGS)))

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  21. Zoya is so very lucky to have such wonderful parents to advocate for her! So happy that you have been able to help Zoya begin to enjoy life with less anxiety:) You are all so very blessed to have each other............

    Susan from Boston

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  22. I guess I'm a blog stalker- I've been reading your blog for a while and find inspiration in the love you have for your girls, the care you take with them, and the joy you find in them. I have two of my own who I adore- but they also make me crazy some days! You have bravely talked about issues of adoption, DS, nutrition- and now this. I absolutely think that as Zoya's parents you know what is best for her- and you're already seeing the wonderful difference in making the hard choice of putting her on meds. While I understand your desire not to medicate your kids unnecessarily- it sounds like this choice is letting your daughter's personality and her enjoyment of life blossom- so it's the right choice for her in this momment. Thank you for sharing your family- the challenges and the blessings. Prayers for you and your family- and hugs to your beautiful and lively girls.

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  23. Thank you for this post. I struggled with starting my son on seizure medication- still do. I'm thankful for the med that benefits him, but still worried about the long term effects. That's when we really have to give them to God, again and again. Thank you for your blog. Love it.

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  24. I have suffered anxiety since my 20s. It is a difficult path. No one knows how horrible it is until they go through it. I too am on a small dose of medication. I still have to do other things to work on it too, but the medication allows me to function. I have raised a beautiful family, tutored many children and been happy for the most part. Zoya is a beautiful little girl and if the medication allows her to live more fully, God bless her. You are amazing parents.

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  25. I have followed your blog for a long time, with joy. I want to applaud you now for doing what is necessary to help Zoya. I was a child who, from the age of 12, suffered with severe depression, but being a child I just thought it was normal, I guess. It worsened in my early twenties when my new husband and I were doing short-term mission work in Great Britain. I had three major episodes of hellish depression before I discovered, through a Christian counselor, that my depression was treatable. I still remember the day that the medication "kicked in", and I experienced "normal" for the first time in years. Did it solve all my problems? Of course not. What it did do was restore my ability to function without paralyzing despair. Had I not experienced this myself, I probably would have been one of the loudest voices saying that a Christian shouldn't need medication to function. My doctor had to remind me, early on, that as Christians we don't deny insulin to the diabetic, or blood pressure medication to those with hypertension. God created our bodies to function through chemical processes, but we live on a fallen planet, and many things in our bodies can malfunction and be passed on through the generations (or be set off by early trauma). I thank God that he has enabled men to discover ways to treat not only physical abnormalities, but also emotional and mental ones. I am a mom of six, and the family genetic load has manifested in a couple of our children. How glad I was that I could spare them the years of untreated misery that I had experienced by treating their depression early! The fact that psychotropic medications are overused in our society does NOT negate the fact that they can be life-saving for those who truly need them. As one who has "been there", I support your decision and pray that God will continue to give you wisdom as you parent Zoya and her two sweet sisters.

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  26. I have followed your blog for a long time, with joy. I want to applaud you now for doing what is necessary to help Zoya. I was a child who, from the age of 12, suffered with severe depression, but being a child I just thought it was normal, I guess. It worsened in my early twenties when my new husband and I were doing short-term mission work in Great Britain. I had three major episodes of hellish depression before I discovered, through a Christian counselor, that my depression was treatable. I still remember the day that the medication "kicked in", and I experienced "normal" for the first time in years. Did it solve all my problems? Of course not. What it did do was restore my ability to function without paralyzing despair. Had I not experienced this myself, I probably would have been one of the loudest voices saying that a Christian shouldn't need medication to function. My doctor had to remind me, early on, that as Christians we don't deny insulin to the diabetic, or blood pressure medication to those with hypertension. God created our bodies to function through chemical processes, but we live on a fallen planet, and many things in our bodies can malfunction and be passed on through the generations (or be set off by early trauma). I thank God that he has enabled men to discover ways to treat not only physical abnormalities, but also emotional and mental ones. I am a mom of six, and the family genetic load has manifested in a couple of our children. How glad I was that I could spare them the years of untreated misery that I had experienced by treating their depression early! The fact that psychotropic medications are overused in our society does NOT negate the fact that they can be life-saving for those who truly need them. As one who has "been there", I support your decision and pray that God will continue to give you wisdom as you parent Zoya and her two sweet sisters.

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  27. Sarah, from day one you have devoted your life to helping that sweet angel and what you are doing now is NO different! Only you and Shawn know what is happening to your little girl on a daily basis and because I know you I know that you are doing the very best for Zoya! Keep going.

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  28. Hi, I have been a follower of your blog for a long time, and have been so blessed by it! I just want to affirm you in your well-considered decision to try medication to help Zoya. I was a child who, from the age of 12, suffered from severe depression. Not until 15 years later and after several nightmarish episodes of anxiety-ridden major depression was I willing to consider taking medication. By then I had two small children to think of. My doctor, a believer, had to reason with me. "If you were diabetic, would you take insulin? If you had high blood pressure, would you take something to treat that? Your body doesn't make enough of this stuff, and this medication can provide it." I still remember the day the medication "kicked in", and I experienced "normal" for the first time in years. It literally saved my life. God made our bodies to function chemically, but we live on a broken, fallen planet. Whether through genetics or early trauma, sometimes our bodies can't provide what we need to regulate our minds and emotions. The fact that psychotropic meds are overprescribed does NOT negate the fact that for those who truly need them, they can be life-saving! We now have six children, and the family genetic load has shown up in two so far. I was so glad to be able to save them the anguish I experienced as a teen and young adult by getting them the treatment they needed. The same God who enabled us to discover penicillin and digitalis

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  29. Hi, I have been a follower of your blog for a long time, and have been so blessed by it! I just want to affirm you in your well-considered decision to try medication to help Zoya. I was a child who, from the age of 12, suffered from severe depression. Not until 15 years later and after several nightmarish episodes of anxiety-ridden major depression was I willing to consider taking medication. By then I had two small children to think of. My doctor, a believer, had to reason with me. "If you were diabetic, would you take insulin? If you had high blood pressure, would you take something to treat that? Your body doesn't make enough of this stuff, and this medication can provide it." I still remember the day the medication "kicked in", and I experienced "normal" for the first time in years. It literally saved my life. God made our bodies to function chemically, but we live on a broken, fallen planet. Whether through genetics or early trauma, sometimes our bodies can't provide what we need to regulate our minds and emotions. The fact that psychotropic meds are overprescribed does NOT negate the fact that for those who truly need them, they can be life-saving! We now have six children, and the family genetic load has shown up in two so far. I was so glad to be able to save them the anguish I experienced as a teen and young adult by getting them the treatment they needed. The same God who enabled us to discover penicillin and digitalis

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  30. Hi, I have been a follower of your blog for a long time, and have been so blessed by it! I just want to affirm you in your well-considered decision to try medication to help Zoya. I was a child who, from the age of 12, suffered from severe depression. Not until 15 years later and after several nightmarish episodes of anxiety-ridden major depression was I willing to consider taking medication. By then I had two small children to think of. My doctor, a believer, had to reason with me. "If you were diabetic, would you take insulin? If you had high blood pressure, would you take something to treat that? Your body doesn't make enough of this stuff, and this medication can provide it." I still remember the day the medication "kicked in", and I experienced "normal" for the first time in years. It literally saved my life. God made our bodies to function chemically, but we live on a broken, fallen planet. Whether through genetics or early trauma, sometimes our bodies can't provide what we need to regulate our minds and emotions. The fact that psychotropic meds are overprescribed does NOT negate the fact that for those who truly need them, they can be life-saving! We now have six children, and the family genetic load has shown up in two so far. I was so glad to be able to save them the anguish I experienced as a teen and young adult by getting them the treatment they needed. The same God who enabled us to discover penicillin and digitalis

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  31. I have been following your blog for awhile now and absolutely have fallen in love :) Your family is beautiful!I found the blog when Anna Robinson linked to your site. I actually went to school with Anna and church with her family :)

    I am also dealing with a child with pretty severe anxiety. I have no idea really where to start...if you get a free second...would you mind emailing me some of the stuff you tried first before the meds? And maybe what meds you ended up using? I really want to help my son feel better and happier in life...thanks so much! therankfive@yahoo.com

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