how I love…

this girl.

The news we received yesterday just solidified that, in so many ways.

Vivienne has skeletal dysplasia:

“Skeletal dysplasias are bone and cartilage disorders that affect the growth and development of the skeleton and result in short stature and dwarfism.”

There is more to share, but I’ll have to collect my brain before I can do that here.

I am tearful. I can’t quite put my finger on exactly why… all I keep thinking of is how ridiculously much I love this child.

I am so, so blessed to be Vivienne’s mother.

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Comments

  1. Mrs. S. says:

    I do understand your tears, but she is with a wonderful family (been following your blog since we adopted our daughter from China)who will totally be there for her on every level. She is blessed to be with you all and she is the cutest!

  2. You girl is just so gorgeous, and it comes through clearly on the photographs! Maybe it's all the love flowing through her that makes that smile so broad.

  3. Valerie says:

    God surely knew what he was doing when he united this mother and daughter! HE chose the perfect mother for this PERFECT child!!!

  4. Chandra says:

    Yes, you are blessed!

  5. Ashley Sisk says:

    I follow several blogs that have children with various types of disorders. I want to make a cute joke but I think it's too soon and I know you need to work though some emotions first. She's a beautiful girl though and you're lucky to have her!

  6. The Gang's Momma! says:

    . . . and she is so, so, so blessed to have you as her momma. Her mother bear. Her advocate. Her nurturer. What she "has" is nothing compared to who God made her to be and how He will equip you to get her there. His plans are perfect and His will WILL be accomplished through your willing hands and lionness' heart for this girl!!!

    Let the tears come – He's capturing them and cherishing each of them. He is with you!

    Praying for you today, while you digest and process. And looking forward to the journey of what He has for you all to come. {hugs to you today!}

  7. Football and Fried Rice says:

    wow.

    you are truly blessed.

    so is vivienne.

    God made a perfect match with the two of you.

    and she could NOT be more darling!

  8. Allison says:

    Vivienne is just PERFECT! No medical diagnosis can change that. AND she is one determined little girl and I cannot imagine that anything in life will ever stop her. You are definitely blessed and so is she. She couldn't have a more perfect family to thrive and be loved. Give that girl a big hug from me.

  9. Lost and Found says:

    and she is blessed right back

  10. Patricia/NYC says:

    There is no doubt that you all are meant to be Vivi's family & she yours…blessings abound for all of you!!

    Her happiness & the love she receives is so obviously radiated from her sweet, beautiful face!! Look at that SMILE!!! LOVE IT! LOVE HER!! :)

  11. Praying for you and your family as you digest all of this new information about Vivi. Knowing that He will keep you at perfect peace because she is fearfully and wonderfully made!

    Blessings! Stacy

  12. she is beautiful and perfect– don't let words squelch that!!!!

  13. Stefanie, Though I haven't met you in person, I can't imagine anyone more perfect to be Vivi's mother! She is so blessed to have her little socks loved off by you. How lucky she is to be defined as your daughter and a child of the king instead of by a syndrome!
    I'm praying for you as you two face the future together.

  14. I love reading about your love for Vivienne. What a blessed family you are indeed!

  15. The Milfords says:

    So glad you got some answers. And I agree, she is precious!

  16. Colin and Jill Canada says:

    My beautiful friend, it couldn't be more obvious how much you love and adore every one of your children.

    However, this photo is especially special, instead of her looking up to you (with that hero status you only get when you child is young and trusting), and I also know she very much does…but this time, I can almost see you looking up to her.

    She is SO precious.
    God IS SO GOOD.

    Jill

  17. The Ferrill's says:

    Oh sweet Vivi! She is SO loved by you and ALL your crew. I know, I've seen it in their eyes in every picture!
    She's got lots of family to pray her through whatever hurdles she might face. And with her spunk, she's got a lifetime of victories ahead!
    I love Jill's comment…and I love the way the Lord gives us just the child he knows WE need the most!
    BIG HUGS!

  18. Thinking of you both today…and the power of love!

  19. Hugs for Vivi and her mommy and daddy and praising God for creating her so absolutely perfect in every way….and placing her in your loving arms.

    She was just meant to be your baby girl….from the beginning of time. That is why you love her so much. :)

  20. You two are so beautiful together! Tears are a given part of parenthood – the happy kind and the concerned kind, but it's beautiful that all of our mommy tears are born out of love.
    Praying for you all as you face your future together….

  21. Jeanniemb1 says:

    I totally know what you mean. We have a daughter who has been diagnosed with a mitochondrial myopathy, and the more bad news we get, the more I just want to squeeze her. I can't imagine anything ever being "wrong" with her in my eyes…I love her so much I could BUST!! That is actually what brought me to your blog. A friend who knows what we struggle with told me I should read your blog, because what y'all were dealing with little Vivi reminded her a lot of us. Kindred spirits. :-)
    Thanks for sharing your heart!

  22. I understand your tears…your heart bursting with love for her…and the overwhelming feelings you're having as well…You are all blessed and how great to know that even though this may have taken you by surprise, it didn't surprise God – He's got Vivi in His hands, the best place possible:) Keeping you in my prayers!

  23. An amazing Mom with her amazing little girl. Sending hugs today!

  24. Jennifer and Greg says:

    She is fearfully and wonderfully made. You are blessed to be her momma and she is blessed to have such a wonderful family. Everyone wins.

    Praying for you and those tears that come after such news. God is holding you both.

    Blessings,
    Jennifer

  25. Mom to my China Posse says:

    What a perfect match God made when he brought you to Vivi. All though the news may be new to you, remember God has known it all along and in His own timing has revealed it to you, because he knew you guys belonged together. celebrate that sweet baby girl!

  26. schizmenos says:

    As parents we hurt for our children when we know they are going to have pain, trials and challenges. But once we realize that God is in control and he gives all of us different burdens that help us become the person he would have us be, we can sometimes see a little clearer the big picture He has planned. Of course, that doesn't make a mommy's heart hurt any less. I am praying that our Father will comfort and guide all of you during this time. Your are such a blessed family and are such a blessing to so many of us readers.

  27. There is no question that Vivi was meant to be right where she is and that she has an incredible ability to capture the hearts of all she meets….I know…I'm one of them.
    I have never stopped thinking of her…or you.

    I am so happy that you finally have some closure on a diagnosis but I know that whatever the diagnosis was there would be nothing to waiver the love you have for your beautiful little girl.

    I just adore seeing both your faces here!

    xoxoxo
    Dita

  28. Joe and Jane says:

    I'm glad you have some answers. She has a great advocate for a mom.

  29. Chinamama says:

    Vivi is perfect and nothing will change that. She is right where she needs to be; with you guys. She will grow into a beautiful adult and nothing will stop her. You'll see. She is perfect.

    Sharyn

  30. She knows she is loved…you can see it in her smile. And in yours. A perfect match!

  31. Sharon Ankerich says:

    Completely beautiful and completely your daughter!!!
    Blessings!

  32. roomforatleastonemore says:

    Just hugs and these words … this post solidifies for me why I consider you a friend and we've never met and why I keep coming back again and again to your blog.

    And that picture of you with her … now that is one for a frame if I ever saw one. (((from down south)))

  33. bytheriver says:

    She is a great girl – so full of life – something she will deal with but not be limited by!

  34. She's simply adorable! That smile is contagious! Your Mommy's heart is allowed to
    feel sad.

    Here are some words of encouragement:

    "For you created my inmost being;
    you knit me together in my mother's womb.

    I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.

    My frame was not hidden from you
    when I was made in the secret place.
    When I was woven together in the depths of the earth,

    Your eyes saw my unformed body.
    All the days ordained for me
    were written in your book
    before one of them came to be. "
    Psalm 139: 13-16

  35. Table for Six says:

    praying and loving you and your family

  36. What's not to love and adore about that precious child. You are such a good mommy how blessed she is to have such a loving and attentive mother like you Stefanie

  37. withgratefulhearts says:

    Praying for you. How wonderful that Vivi is here with you all. When I think about perhaps what her life could have been…and what it will be now…what a blessing for you all. God sure knows what He is doing!

  38. We get your tears – it's easy not to cry if you don't care….but when you do care its really hard not to!

    Let the tears come – you've earned the right to them….

    And then when they are done go on back to living and loving like you do anyway – it'll all be good!

    hugs and prayers –

    aus and co.

  39. Oh Stephanie! You are all in my thoughts and prayers. Indeed love is an amazing thing and can do miraculous things to our lives, to our hearts. Things we never dreamed could happen. And it's definately a two-way street! Blessings to you!

    Lisa A

  40. Dinn Family says:

    Praying for you all as you process everything! You are blessed indeed. Think of all the new things you'll learn! Vivi is absolutely precious!

  41. Carey and Norman says:

    I'm glad that you were able to get information while you were in Boston. I'm sure it is hard to absorb all at once, but your love for Vivi and belief in God will get you through. Vivi is such a sweet and vivacious girl and will be able to do anything she sets her heart upon!! Thinking of you!!

  42. The SIlburns says:

    Sweet Vivi, fearfully and wonderfully made for just this time and place…in your family! Praying the comfort of the Lord and His sustaining grace to your momma's heart. Sweet Stefanie, fearfully and wonderfully made for just this time and place…to be Vivi's Mom.

  43. Oh Stefanie, of course you're tearful. What mama wouldn't be? But I look at that girl's smile and see such happiness and confidence. She's so loved and she knows it. What a gift for any child, but for our kids with challenges, it's like water to a flower. She'll continue to bloom. I just know it.

  44. megadog says:

    Thinking of you and your beautiful Vivi. Know that you are an inspiration to so many of us out here. Thank you for sharing your joys and struggles. That little girl is lucky and loved and happy! Praying for you.

  45. Stephanie,

    I hope you realize what a blessing your honesty is to others. We are leaving to meet our baby girl in China in 2 weeks. I know what her special need is. I have done the research. I have prepared mentally. But a Mamas heart will always mourn for the hardships that our babies may face. What a gift God has given us to be able to mother these wonderful children. Vivi is such a joy to behold in all of your pictures. I imagine she knocks your socks off in real life! Blessings to you and your family.

    Kym

  46. It is obvious how head-over-heels in love with Vivi you are! She is precious and so are you, my friend!

  47. Amy Bayliss says:

    Hi Stefanie!

    I just read about little Viv and all I can say is congratulations! You are about to see the world differently – through the eyes of your child – and it is a beautiful site to bestow.

    I too have a short statured child. My Gevan has Cartilage-Hair Hypoplasia. If you want to check it out I just started a blog for parents raising little people: http://www.raisinglittlepeople.com.

    I -somewhat- know what you are feeling right now. God revealed my heart to me right after I learned of Gevan's condition. It is almost like a loss. You have to mourn the death of a dream you conceived for little Viv. Now you have to embrace God's plan for her. She is still the same child you knew and loved before her diagnosis. The only thing that has changed now is the ways in which you will raise her.

    That really is a beautiful little girl you have there. You are one blessed mama! Please let me know if I can help in any way.

  48. Virginia says:

    It's easy to see why you're so in love with her. Every little inch of her is absolutely loveable!! And God has placed her in just the right family =).

  49. you are both so beautiful. sending hugs :)

  50. I certainly understand your tears, Stefanie!!! However, you are so right in that you are so blessed and so is sweet Vivi! God did know what He was doing in bringing her to you and as you said, you LOVE her and that is all that really matters! Hugs to you and to sweet Vivi!!

  51. Amy Reneé says:

    She could have no better mother and father than you. God knew you would bring her into your family. Your lives and hers will be forever blessed.

  52. Sammons says:

    She was made perfect by her creator and Perfect she is!! In every way! There is nothing not to just LOVE LOVE LOVE about this darling child you've been blessed with. What a wonderful mommy you are! Mary

  53. Stefanie,

    I will have to copy something I read today.."Be still my soul, the Lord is on your side". He will also place, and looks like he already has from the comments here, people in your life who are the parents of children just like your daughter physically. He alone will be your well of strength to draw from, but He does place people in your lives who have BTDT along your path so that you can know it's gonna be ok. Blessings to you and your beautiful daughter.

  54. I am reminded of the story of Rack Shak and Bennie (ok, veggie tales names but you know who I'm talking about!) They were told they would be thrown in the furnace if they did not denounce their God…and they responded…that the Lord would surely save them, "but even if He does not"…they knew that God was God EVEN if He didn't save them and they burned up. Sometimes life just makes us stop and say…"Lord, you can take this away, you can heal, you can change…but even if you do not.." You adore her, she adores you. Even if this is her plan, He LOVES you and He LOVES you and He will teach you and her more about Himself in this process than He could if this was not the case. Hugsand Prayers

  55. Your precious daughter is so loved! I have a feeling everything will be okay, she's got a great family to rally around, you too…you've got your followers and the power of our prayers!
    HUGS!

  56. Chasing Dreams Photography says:

    First what a stinky friend I have been…I am so out of touch with blogging right now…so I apologize for such a late response….
    You are such a blessing and such an inspiration to so many. I remember writing to you long ago about Livi and I remember very clearly your words to me…that Livi is where she is supposed to be…with us….so now my friend I pass those same words to you….Vivienne is where she is supposed to be….God chose you to care for her…God holds the cards…but you already know that : ) Your faith and love for God and your family will get you through any hurdle that you may face in the future…
    {{{{{hug}}}}}} I will pray that God continues to give you the strength you need…

  57. Tesseraemum says:

    Sweet Vivi! I don't think anything, let alone a syndrome,will stand in her way!! God knew she needed to be in your family to do all the things He will call her to do. What a shining example she will be as she grows to show folks who put such a low value on "imperfect" kids! She is the same sweet girl, she just has a name for something she has. (I found out I have m.s. a few years ago. I am the same clumsy person I was. Now I have "something" with a name. My clumsiness is still funny! Really! People seem to think you need to be treated differently when you have something that has a name but really you don't.) Sheri

  58. I'm not sure what it all means, but I am sure of the love I see on this blog : )

  59. I am not 100% sure what skeletal dysplasia actually is but all I can say is your family has enough LOVE to get you through anything. I read your blog and it just makes me HAPPY. You have beautiful happy kids. Coming from a 1 sister family I would have love to grow up in a home like yours:)
    Hugs to all of you..

  60. Oh sweetheart – sending love. Hard words to hear. Not because they mean Vivi is anything but perfect, but because you look ahead and see the challenges she might face. You're an incredible, strong, beautiful, loving mama — your whole family is just awesome. Vivi is going to do amazing things, and I can't wait to watch it.

  61. ndunc58 says:

    Remember when you were reviewing Vivi's file and the doctors mentioned that she might have dwarfism, and Chris said something like "so we'll have a short one". You'll have a short one – and I agree, she's PERFECT exactly the way she is!!!

  62. She IS perfect and you are her perfect mama and God knew all of this and put His plans into action. I cannot wait to see what God now has planned for the rest of her life- because I know it's gonna be good. :) Praying for you. Amy

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