Little Miss Katie Q & A

September 17th, 2012

Question:  What’s the hardest thing about caring for Katie?

Answer:  For me, the hardest part is laying her down in her bed at night, turning my back, and walking away.

Not because it bothers Katie.  Her days are full, and by bedtime, her eyelids are drooping, and she’s happy to hear me say it’s time for jammies.  We have our bedtime routine and our snuggling time, and then she lets me know when she’s ready to stop snuggling and dive into her bed.  A Bach CD is always playing as she and Verity drift contentedly off to sleep.

So it’s not that.

It’s just…well…I don’t know if I’ll ever feel comfortable putting her down in her crib, turning my back, and walking away.


Question:  How do you deal with your grief and anger over seeing the effects of the neglect on Katie?

Answer 1:  This is a good question and one that made me think, because I haven’t experienced grief and anger about this since bringing her home.  I don’t think any of us have.

I’m not sure why that is.

Perhaps it was because we were very prepared for Katie as she was.  We really did fully accept the Katie Before as the child we would love and care for until she reached the end of her life.  We understood that she might not grow, gain any skills, or love us back.  There was so much joy in simply being allowed to have her as our daughter.

Maybe too, it’s because a mother of a large, homeschooling family learns to meet each of her children where they are, with their individual strengths and weaknesses.  None of our children are being compared with a peer group.  We don’t want to compare the weaknesses of one child to the strengths of another, or to see children in terms of their weaknesses.

A fetid odor rose from every part of Katie Before, mingling with the horrid odors of the top floor in August with all the windows closed.  A stench that comes back to my memory when I look at these photographs.




So I think at least part of the answer to this question must be that we accepted Katie completely as she was.

We still fully accept Katie.  We just don’t view her as lacking.  If she stops progressing, we will not be sad, angry, or disappointed in her.

Our joy in her and love for her are not conditional on her progress from the child we picked up from the Pleven orphanage last November.  The joy in our hearts that day cannot be put into words.  If we tried, it would sound something like…

“We’ve just been given one of the world’s greatest treasures.”



Answer 2:  There is no room for grief and anger in our life with Katie, because Katie herself is so thoroughly filled with the joy of life!  We say that she’s the most grateful person in our family!  As Joseph observed, “Katie likes being Katie.”

She has no understanding of how different she would be if she had been tenderly loved and cared for by her family from the time of her birth.  She just knows that she is surrounded by people who love her, and she loves it!  She loves to be loved.

Grief and anger are legitimate and appropriate emotional responses to some things, but they just aren’t part of having Katie in our family.  Her care may be time-consuming, but she herself, the person who is Katie, only adds to our joy in life.

Katie’s progress is a source of celebration.  She keeps progressing, so we get to keep celebrating!


She’s still growing!  She just went through yet another growth spurt, putting on two and a half more pounds and adding on another inch.  She’s growing into 4T clothing and size 7 shoes!

She feels free to explore and try to get in on any action that interests her,  and she feels comfortable anywhere we take her.

Even the hut some of our children built in the woods.  Goes nicely with our study of early America…


People who have seen Katie recently after not having seen her for several months all remark on how much stronger and more active she is.  We definitely plan to buy an Ergo carrier before we take her on any more hikes!

She goes up onto her hands and knees more frequently than she used to.

She lights up when I come into the room, and she isn’t happy when I leave the house without her.  She accepts more affection from me, enjoys it more, and sometimes even initiates it herself.

Over the past month, she has shown noticeable progress in how much eye contact she makes with me.  As a direct result of her increased ability to focus on visual cues, she is expanding her vocalizations!

To her “B,”  “P,” and “M” sounds, she has added a soft “TH” sound, an “S” sound, and a hard “G” and hard “C” sound.  She also has a “DZ” sound as she tries to say Joseph’s name, and a “D” sound for “Daddy,” “Daniel,” and “done.”

She’s more likely to attempt to imitate sounds.  For instance, I might be working with Verity on the word, “cup,” and be saying, “Verity, C, C, C!”  And suddenly realize that Katie’s making a guttural hard “C” sound!

Her new IU 13 speech therapist observed after her first session, “Katie’s going to be verbal.”

She is learning to complete some very small tasks, like picking up a diaper from the pile before I lay her down to put it on her.  She holds it in her hand until I extend my hand and ask her, “Katie, may I have it please?”  Whereupon she proudly puts it into my hand!  Not too long ago she would shake the diaper out of her hand seconds after picking it up.  When we first brought her home ten months ago, she refused to allow anything to touch her palms, and would attempt to push all items away with the back of her hand, in irritation.



Until the past few weeks, this vibrating teether irritated the living daylights out of Katie!  I helped her get used to the feeling by pressing it to her mouth while making it vibrate.  She always jerked her head away.


Then one day, I glanced over at her to see this.  Now it’s one of her favorite toys.


Oh yes, I forgot to mention above that I occasionally see her attempt to chew her food after I withdraw my hand.  For a long time, she only chewed as long as I held the piece of food between her molars.






(She’s not imitating someone talking on the phone; she’s listening to the music.)


She’s begun to seek out toys.  Now we sometimes see her attempt to play with a few of them appropriately rather than just tapping the side of her head with them, or tapping a surface and putting her head on it to listen.  She loves noisy toys.


The xylophone is still her favorite toy.  She can get a lot of sound out of that thing!


Daniel doesn’t mind sharing keyboard space and practice time with his little sister!

(If you look closely at this picture, you can see that Katie was receiving her third set of IV treatments for her fragile bones.  In December, she should receive the fourth treatment, and then at the beginning of the new year, she is slated to receive her second DEXA scan to check her bone density.  We are still handling her as though she has extremely fragile bones.)






Thank You, God…


…for sending us such a little sparkle.






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29 Responses to “Little Miss Katie Q & A”

  1. Desi says:

    My Goodness, this girl is bursting with love for life! And I am bursting with joy from soaking in all that joy! Way to go, Katie bird!

  2. Julie says:

    Are Katie’s bones still fragile?  Was wondering how long you will need to be extra careful with her, preventing falls, etc.

  3. Denise says:

    AMAZING!!  Beautiful!!!
    I’d love to hear more of how you are structuring your days….
    Where you learned of some of the at home therapy things you are doing….

    I know you are super busy woman though, and I am thankful for all that you do share!!!

    I am so thrilled for your family, you are always in our prayers.       

  4. Mere says:

    I am truly blown away. I am in awe of how God has used Katie! Like I have no words, but I do have a question: will Katie ever be “normal” in the sense that she matches her peers mentally and physically? I know she has Down’s so will she ever act like a normal Down’s teen or young adult? She seems to be progressing so well, which is why I ask. 

  5. Galit says:

    What an inspirational read as I celebrate the Jewish New Year!  Thank you so much for making my day.

  6. Emilie Roush says:

    I love how long, healthy, and filled out her legs look!

  7. Kristin says:

    Love all of the pictures!  So amazed at how quickly she’s progressing.  Praise God for progress….and for her joy, which multiplies any accomplishments 100-fold.  Seeing her delight in her life and her accomplishments is so fun from this far away :)  (since I can’t just pop over and see her (and you) in person)

  8. Deanna Rabe says:

    She is delightful!
    I love how you shared about loving her and being willing to just love on her even if she hadn’t progressed at all.
    What a gift that she has flourished…it is so hard to see those before photos again…hard to see that it is the same person! 
    The enemy hates life –

  9. Susanna says:

    Julie, I meant to include that info in this post with her piano photo! Went back and added it in; thank you for the reminder! :)

  10. She has changed so much since when we saw you all last May.  So amazing to see her bloom and grow in the pictures you share of Katie.  She is such a beautiful little girl!  
    Wonderful progress and it looks like she fills your day with many good things!  God is good!

  11. sabrina says:

    Absolutely amazing and beautiful!!

  12. Becky K! says:

    WOW!  It has been a while since I have had time to sit down and read your blog, so I am just blown away at how much Katie has changed!  She has grown so much and just so beautiful! I have chill bumps from just being amazed at how much God has done for her and for your  family!  Just WOW!

  13. Susan says:

    Katie is just stunning! Thank you for letting us share her miracle as witnesses to what love, faith, tenacity, and endurance can achieve. Katie’s story is as beautiful as she herself is…

    Susan in Ky
    cousin to 2 from EE  

  14. Carol says:

    I love this post! :) Also, did you see who is on the MFFM page of RR!?!
    I know you likely already knew about these sweet children having committed families, but it’s so exciting to see it official.

  15. Amy says:

    LOVE seeing Katie updates!  Thanks for sharing her with us.  :)

  16. Dawn Wright says:

    Amen and Hallelujah!!!!  Katie you are too CUTE!!!

  17. brenda lamey says:

    Wow!  I have not been over to your blog in a while!  Katie has changed so dramatically!  She is chubby and cute and full of life!  I hope her memories are faint of her time before she was with you.  I pray her heart is full of love and that she continues to blossom!  She is exquisite!

  18. Andrea says:


    As I came to the first set of pictures, and I saw the third one of you holding Katie, her frail body unable to hold up her pants, her spine visibly protruding.  The look in your eyes got my mom heart like a knife.  There you are holding your precious, vulnerable and honestly dying new daughter in your arms.  I can see how you were trying to be calm and strong for Katie, but I can see the pain and anger in your eyes.  It’s like you were saying just with a look “How could anyone let this happen?”, “This is inexcusable”.  But I can also see how helpless you must have felt at that time as well.  I bet you wished at that moment that you could run out of there with all the children in that awful place in tow.  Oh Susanna, thank you for posting this.  I have not been to that corner of the world yet, so I have not seen these things for myself.  But my heart still breaks for these kids.  Obviously with the new baby coming I know that God has other plans for us, for now.  But as a mom, I felt your pain in that photo.  Your eyes said it ALL!  I am excited for your family with Tommy coming!  I hope you are well otherwise!  God bless you my friend.  Your babies are beautiful!


  19. Rita from Spain says:

    OH Susanna, what a lil cutie!! Thank you so much for sharing with us….I LOVE hearing about Katie and all her progress…and all your family as well…..She has such JOY in her face….HUGS….

  20. Loren says:

    It’s hard to fathom that she’s the same child in those photos.  Unbelievable.  Her story is amazing and I love that it started with tiny unborn Verity being given to a family who wouldn’t abort her.  God is good! :D

  21. Katie says:

    No way.  No way that is Katie.  No way that is the same little girl who was frail, skeletal, barely tipping the scales at 10 pounds, wearing infant sleepers, rebuffing all human contact… just one year ago!  No WAY!  When I looked at the first new photo of her, the thought struck me – my goodness – she’s a CHILD!  She LOOKS like a child!  She doesn’t look like a little porcelain dollbaby anymore.  Sure, her actions and abilities and habits might be different than others – but who cares?  That JOY on her face, that happiness that has been divinely given to her to be in such a wonderful family who loves her for who she is, no matter what that means for her abilities… That’s the greatest reward a family could imagine.  Loving your child.  Just like you love your other children.  Just like you love Tommy.  Just… family… love.  Yes… this is JUST what sweet Katie needed.  I long to see that smile in person, to talk to her and tell her how beautiful she is, hold her… what a blessed mommy you are to have this little girl in your life.  Love reading your updates about her… adore those pictures.  God bless.  Love to you all from Ohio :)

  22. Amanda says:

    Oh this makes my heart swell. I check up here often and my mom and I have followed Katie’s story since the almost beginning. To see how far she has come now? It is amazing. Nothing short of a miracle. I can’t wait to see the same process repeated with the new member of the family.

    I do have one question though….does Verity sometimes get left out while Katie is getting such intensive therapy? Or do you look at it as having a set of twins, and doing the same therapy with both?

  23. Holly F. says:

    Sweet Katie is no longer a tiny bird.  She has become an eagle!! 

  24. Brianna D. says:

    Thank you for this post.  

    Where you said, “…a mother of a large, homeschooling family learns to meet each of her children where they are, in their individual strengths and weaknesses…” and you talk about totally LOVING Katie (as you do all your children) for who she is right now –
    Well, that is the part really made me think, convicted me, made me pray, and now today has been encouraging me to have that self- giving, unconditional love for my own children (ages 1 and 2) who of course at that age have many needs, just because they are young children.  

    Thank you for your Christ- like example!  You do encourage me to be walking in the Spirit so that I will be able to be formed more like Christ!

  25. Cheryl says:

    Love this post!! Thank you! I also LOVE that very well built hut that your children made!  They are doing a Social Studies/Science Fair at my daughter’s middle school soon, and I know your hut would certainly take top prize!! :)

  26. Kenna says:

    Simply beautiful!!  Her smile says it all – such a joy for life and everything that surrounds her!!  You are all so very blessed!

  27. Mary Ann says:

    I think Katie probably thinks she died and went to heaven!! God bless you!

  28. alice says:

    I love this update!!! What a precious bit of sunshine she is!

  29. Susan Wiker says:

    What a special little girl!  To see how God has used you and the family to help Katie become all that HE wants her to be for His purposes.  Our computer has been down for awhile – I have missed seeing your blog.  Praying as God has you on a new adventure with Tommy.  Blessings!

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