There is an elephant standing smack dab in the middle of my brain.
Until now, I just haven’t felt ready to really talk about it… despite the fact that it occupies the majority of my brainpower lately. And, other than when I am safely nestled in my husband’s arms and free to bawl my eyes out, I haven’t.
I still don’t really want to talk about it, but I guess I’m ready to at least try. I feel like I’ve got to try. Because until I do, it just doesn’t feel right to talk about anything else.
I just can’t seem to get around the elephant that is occupying way too much space in my gray matter. So I’m hoping that by sharing my thoughts here, I can move on, feeling like I have at least made an attempt to address this large, looming reality.
Vivienne has dwarfism.
When I read that, when I think about that, my heart is in my throat. My stomach is in knots. And honestly, I’m not exactly sure why. Dwarfism isn’t the end of the world. In fact, I’m quite certain that there are many, many people who are living very happy lives, who happen to have dwarfism.
But my Vivienne isn’t just any one.
She’s my baby. And I love her desperately.
I’ve tried to decipher exactly why I feel so plagued with this undeniable, unshakeable sadness since her diagnosis. After all, we did understand when we accepted her referral that there was a chance that Vivienne had dwarfism. And we determined that if this was the case, we were okay with it. Because, as much as any biological child would be, she was already our daughter.
In fact, my husband decided then and there, before we ever even sent our LOI to China, that having a daughter with dwarfism was just fine with him. And he hasn’t flinched since. How I envy his acceptance. His steadfastness.
Once I met Vivienne in China, it appeared (to my admittedly untrained eye) that she indeed was a dwarf. And I grieved, to an extent, for her. For me.
And I thought I’d finally come to a point of acceptance.
Once home though, we visited doctors, orthopedic surgeons, physical therapists, occupational therapists, orthotists… all who doubted that Vivienne had dwarfism. And looking back, I can see that a small hope sprouted from those visits. A hope that beyond her arm deformity, our daughter would be ‘normal’.
But Vivienne is not normal. In fact, her geneticist at Boston Children’s admitted to having never seen another child with a condition like Vivienne’s. And she further shared that it might be a while before we do know exactly what form of dwarfism Vivienne has. With over 400 forms of dwarfism identified, the reality is, we might never know.
Our next step is to send Vivienne’s x-rays to the Skeletal Dysplasia Registry in Los Angeles. The registry serves as an opportunity for others in the medical community to review her x-rays. And hopefully, shed some light on our girl’s condition. Not so much for the present, because we know that Vivienne is doing wonderfully. She is growing. She is bright. She is positively magnificent.
But we need to know for her future. Will she need surgeries to straighten her spine? Lengthen her arms? Will she be able to have children? Because with each form of dwarfism, there are different outcomes. The spectrum is wide and deep.
And as the mother of a child somewhere on this spectrum, I find myself desperately groping for answers where there are none.
But I’m doing my best to just rest. In Him. And in the beautiful realization of just how deep and wide our love for Vivienne truly is.
His plan is perfect. This I know.
Romans 8:28: And we know that in all things God works for the good of those who love Him, who have been called according to His purpose.
Oh Stephanie. Your heart for these children on the margins far exceeds that of anyone I've ever "known". Vivienne will be fine and YOU will be fine. Our Savior will guide you and help you to except this latest "set-back" and move on. So, just rest.
Wendy in OH
oooh wow, and I thought I was ok to until I read your post and re-educated myself. Ok, off to drown my sorrows in chocolate….
Prayers going out to you.
Stefanie, I'm so glad that you were able to post what you can about Vivi. Our sermon on Sunday was on that scripture and all I could think about was you and Vivi and your family. I hope you'll have a chance to take a listen…www.firstbaptist.org. Praying for you
I can't tell you how instrumental you've been in our adoption decision-making process. I stumbled upon your blog (and No Hands) at the beginning of my research last fall, and in June we finally applied to adopt a boy from China w/ a special need. Thank you for sharing your beautiful heart. I pray God will pour out every resource you need as you love on His kiddos.
Tara Anderson says
Resting in God is the perfect place to be…although your husband's arms make a close second! 🙂 I will be praying for you, Chris, and Vivi as you all go through the process of understanding just how perfect God's plan is. When His ways don't line up with our ways, it's hard to have the faith to see. I'll be praying that you have that faith…and His perfect peace.
Oh sweet friend. God has got such a MIGHTY plan for that little girl. She is positively perfect in His eyes and He won't waste a single ounce of her dwarfism…or any of your tears. He holds it all in His hand and cares immensely for her and for YOU.
You are an amazing mama and a shining example to the adoption community and beyond.
God is using YOU, and will absolutely use Vivienne, in ways you'll never imagine. Things of eternal significance.
Thanks for sharing your tender heart.
You're a rock and don't even know it! You've already overcome the hurdle of bringing that sweet baby girl home. Now, just continue to give it to God and revel in Vivi and love her til it hurts. You've got this!!!
It is OKAY to grieve! I learned this as a mom to a biological daughter with Down Syndrome. I've been there at that moment of truth when you just want to hear the very best news for your child and it hurts when you don't. We just recently adopted a four year old from China as well and just received some news that she is significantly delayed, when no delays were indicated on her referral, and possibly has been abused. It hurts, but then you get up and do what is best for your child. And you are a great mom; Vivi was meant to be your daughter and part of your wonderful family!
"Never be afraid to trust an unknown future to a KNOWN God" Corrie ten Boom
"For I hold you by your right hand I, the Lord your God. And say to you, Don't be afraid. I am here to help you." Isaiah 41:13
Praying for you during this time.
As a mom of 4 whose children all have a diagnosis from minor to major, I understand how difficult it is. Especially at first. Thanks for sharing your story.
As a mama to a daughter whose both diagnosis and future are unknown, I get it. Some days I weep from sadness and the possibilities that I imagine can now never come. (We had a 2 hour huge tantrum that just ended 30 min. ago. I'm exhausted.) Some days I weep from joy at the incredible miracle I have neen entrusted with. I can rest in this… This is God's child, who AMAZINGLY loves her so much more than I do. His plan in His time is what He desires for my daughter. That's all I can do… wait till His plan is revealed and be the best mama I can all the while. Some days this is so simple. Some days this is so hard.
Blessings and prayers to you Stefanie and Vivi and her wonderful family!
Another powerful post.
Deep and wide is it!
It is the love our Abba Father has for you and Vivi.
And clearly the perfect description of your Mother's heart!
Thanks for allowing us the privilege of walking (and praying) alongside you!
Love & Blessings,
Praying His peace for your heart. Praying that you experience His presence, His comfort, His direction and…Him.
I see God, when I read about your family. I see God. Thank you for allowing us to glory in the ways He continues to reveal His love, His mercy and His compassion through you and Chris and your nine treasures.
Whatshername's Mummy says
I'm sorry for Vivi's diagnosis, I'm sorry that you are finding it so hard.
I have had friends whose children have had diagnosises such as autism – I tell those friends that the diagnosis doesn't change the child but it gives them a label that helps others to help them and I hope that the same will be true for Vivi.
Vivi is strong, determined, wonderful, she will get through this and so will you.
With love and prayers from Wales,
I have a cousin who has dwarfism. She has the type that she can never have biological children. She had to take hormones just to go through puberty. But she is one of my heroes. At the age of 38 she has one adopted son, and has a masters in social work. She has a wonderful husband who loves her. She is one of the most beautiful people I know.
I don't know what to say, but you are in my prayers for strength. You are such an encouragement to others and God loves you so much!
"For I know the plans for you," declares the Lord, "Plans to prosper you and not to harm you, plans to give you HOPE and a FUTURE." Jer. 29:11
Ashley and Mike says
Vivi is so unique not for her dwarfism but because God intended her to find you and you her. While there may be things that she cannot do that you can, she will get to experience joy and sorrow that we would never be able to relate to because of her dwarfism. She is perfect and will always be perfect so maybe your tears should be seen as tears of celebration instead of sorrow because God loves Vivi so much that He instroduced you to her and her to you.
Our world is changing daily and, when it comes to dwarfism, those changes are progress. When we were kids there were never shows about couples and families with dwarfism and now there are several. There are many critics about reality tv, but personally it has had a positive influence in my life. Had it not been for those shows, I would not have thought that I could parent a child with dwarfism. Our referred child did not have dwarfism, but had I not been exposed via television it may not have been a condition that I ever considered.
There is a mom with my agency, CCAI, that is going to pick up my daughter's foster sister in Henan who is 8 and has dwarfism. I would be happy to put you two in touch if you would like.
Lost and Found says
Vivienne is a happy, beautiful, smart little girl. She is pretty, she is vivacious and she has a loving family. She also happens to be Chinese and also has dwarfism, the latter of which is merely another characteristic of who she is, not WHAT she is. I feel the same way about our kids special needs as I do about adoption. I hope it won't define who she is or be the first thing people notice about her because all those other attributes surely shine. The fact that my baby is Chinese, an adoptee and has brain atrophy is just another facet. Allow yourself to feel what you're feeling. It's completely normal. Vivienne will shine no matter what and no label or diagnosis will change that. Remember what your husband said when you got her referral (I do). "So she'll be a shorty, that's ok"
Rachel's Blog says
Just want to encourage you in what you're currently going through. Vivi is such a sweet girl and will grow into a beautiful young woman, regardless of her condition! God has a bright future for her, I am sure – especially since she is a part of your family.
I don't have any fabulous words of wisdom but there is no doubt that God has prepared you and will continue to equip you to raise this precious miracle! I am praying for God's perfect peace and even for the answers you need. Hugs mama!!
Lori Lee says
My heart goes out to you, I'm so sorry you are going through such a hard time. Our third child was unexpectedly born with an orthopedic problem and the words that you spoke and emotions you expressed were, and are, my own. My blog is http://www.lori-lee.blogspot.com if you read about our experience.
Why is it that men can come to terms with these things faster than women? Or I should say faster than MOMS. We've had moments when I completely and totally grieved due to a diagnosis for one of our kids and my husband seemed to accept it instantly. My heart ached for a trial my child might need to face. And it ached for dreams that I thought they couldn't realize–their dreams and I guess my dreams too. But I do know that this life is to have joy and that no one was put on this earth to fail. Especially with the love of a family, I know VIvi will thrive.
P.S. Some wonderful things happening here….and for a little boy in Yunnan! Thank you for the info.!!
Sharing Life and Love says
Vivienne is a gem. That child just radiates off the screen. Is it really all that surpising that she is so one-of-a-kind, unique? I'm not trying to be cute. She is just magnificient. But you know that.
I think I remember you posting right after LOI for Vivi and you mentioned to your DH that she may have dwarfism. And he said then she'll always be your littlest one or something to that effect. Very positive. Very much a loving father already.
Just so you know, I went to school with a girl who has dwarfism, and she went to a really great college (in a town where MOST people barely graduate high school let alone go to college…or even a really great college). She ended up getting a degree in education(like her mom)and now she teaches high school. She's pretty short, but is doing great. Is married to a guy who is something like 6 foot tall and have 'normal sized' children!
AND…..when I took my son into the ER back when he was 6 months old, the girl working there had dwarfism! She was a radiologist!
Your little girl will not only reach for the stars but she will totally grab them by the fist full and spread them out to those who love her because she has YOU for a mom!
Sharon Ankerich says
What a precious baby!!! Her face just makes my heart melt… so sweet! I just want to say…
You were chosen.
Vivi was chosen.
And God did the choosing…
I think He did great~ He NEVER makes mistakes and His choices are always perfect. He is right there holding you tight as you wrap your brain around this diagnosis.
Vivi is a precious perfect girl in God… He will help you every step of the way. Thank you for sharing your heart and just know I am praying for you all!!!
I wonder if a part of you may be trying to come to terms with your family's eventual "loss of invisibility"? I suspect that you are somewhat like me in that I like to just go about my business and not attract attention to myself. When I became mom to a child with autism, it was difficult for me to begin to lose the invisibility that I had had up to that time. While, my daughter is beautiful & looks typical and thankfully is very well behaved, her happy little quirky mannerisms get us noticed for sure no matter where we go. Over time, I've developed much tougher skin and this no longer bothers me in the least. Instead, I am so thankful that God had faith in me and blessed me beyond measure with my beautiful perfect daughter who has given me a new prism with which to view this world. Hang in there Stef. Don't think too far in the future, it becomes overwhelming. One day at a time, OK?
Our prayers are with you as you and your family love and adore this precious little girl with so much love you could burst. She really could not be ANY cuter! :-)Thanks for sharing your heart. My heart hurts for you.
First I must say – I love all your readers – the comments you have are all so full of understanding, love and encouragement. just like you.
Sending hugs and prayers 🙂
I have followed your blog for most of our adoption process now, and my husband and I are so inspired by you and your family. Thank you for this post and thank you so much for sharing your feelings. We are in the process of adopting a little girl who has an eye condition, and we have no idea if she will just need glasses or may be blind in the future. No doctor could tell us anything. What we do know, is that she is ours and we were led to her by someone who knows the plan a whole lot better than us. I thank you for sharing from the deepest part of your heart and for sharing your beautiful daughter with us.
Have you seen this blog? This Mama knows a lot about dwarfism, she might be great to get in touch with.
Brent and Sandy says
This posting has meant so much to me. We brought our nsn daughter home from China last March and while we knew she was tiny and delayed she was very healthy. She has been working with therapist since shortly after we came home and while she has made wonderful progress and has completely normal attachment they are now talking about cp. They keep telling me that if that is what it is that it is most likely very mild and will probably not impact her life very much. The thing that hurt the most is when they told me that if she had been with us from day one that we probably wouldn't even be looking for a diagnosis. With adoption we accepted the fact that there are unknowns and that nsn referral does not mean no special needs. I struggle every day with wanting to know for sure and not wanting to know. I am heart broken over the thoughts because I know she has spent her entire life fighting and this means that she will continue to have to fight. I also don't want her "labeled". I want her to be treated as a normal average child because I think if they treat her with kid gloves she may stop trying to get to where she should be. My heart goes out to you because I know that just because you know it is a possiblity doesn't make it easier to hear because then you start greiving for all your child has to face.
Jami @ livelaughlove5 says
Hi Stefanie, I found your blog through my sister Megan's and I just had to say that I love your heart! Thank you for being real and sharing. The Lord's love spills out from you! Just wanted to let you know! 🙂
Oh Stefanie!! I have been thinking about you so much! I will keep you all in my prayers and I know that your sweet Vivi will be just fine as will her wonderful Momma!
He will give you every tool you need to help your precious youngest daughter through any challenges she may face. Josiah's foster sister had dwarfism and wasn't adopted until she was older…maybe 4 years old or so…she is precious. God knew what He was doing when He wove Vivi into your family's fabric. Praying for peace for you my cyber friend.
My prayers are with you as you process all of this! I went through very similar feelings when I learned our daughter had the severe version of Thalassemia! God is patiently and lovingly walking me through the journey and I know he will for you too! Vivi is a beautiful little girl that now has a beautiful family and will get all the medical care she needs. Not to mention that she will come to know the love of Christ and that she was fearfully and wonderfully made by our loving Creator!
I know this sounds stupid, but have you ever watched the TLC shows "Little People, Big World" and "The Little Couple"? They both center around people with dwarfism, and they have different types of dwarfism. They are really very normal and lead normal lives, they just need modifications in their surroundings. Jen, the wife in The Little Couple, is a neonatalogist.
Thank you for being so real. I know it isn't easy for you to say that you are having a hard time.
Praying for you.
It's always difficult getting past that initial diagnosis, give yourself time to process everything. Vivi is so blessed to be in family that will always care for her and love her unconditionally.
I'm sure you must be thinking about the challenges down the road but try to take one day at a time, for the Lord to bring her to you He must have wonderful plans for her life. Praying for you.
I don't have the gift of words that so many who have commented do, but I am thinking of you and Vivi. Whenever you post about her your words beam with love, and sometimes I leave your blog wishing I could be a little more like you.
I woke up this morning with you and Vivi on my mind. You have such faith Stefanie, and you and miss Vivi are a match made in heaven! She will blossom with you as her mamma:)
Hey Stef – your heart is as wide and deep as the valley that is all the different types of dwarfism – it's a match just like you guys and Vivi are! Look – V is bright, healthy, beautiful, active, living and loving every day. To her – "this ain't nuthin but a thing" – but it's and elephant to you….hummm….maybe has something to do with a Mother's love for her child?
One of the great joys in life is an evening with "bourbon and blues". An old 'blues man' can be quoted as saying "That which does not kill us only serves to make us stronger" – I'm wondering – even at her tender age – does Vivi 'get this'? Probably so….after all….she survived being an orphan in China!
We'll keep ya'll in our prayers – thanks for getting the elephant out of your head and here for us to see – and remember that a burden carried by two is only half a burden each….and look how many other folks are there willing to help you….It "ain't nuthin but a thing"!
hugs – prayers – aus and co.
a Tonggu Momma says
I know you know this, but I want you to know that others know it as well – Vivienne is Vivi, no matter her diagnosis.
Anna B. says
I don't have any wise wisdom to share. I just wanted to say "I get it"…and I am ALWAYS encouraged by the words you share. There is something deeply peaceful about 'resting in it' and coming to accept that we go forward, with these children we love so deeply, without too many answers and still we can find peace in Him.
I hear you on so many levels, Stefanie. Thank you. Vivi is such a precious blessing.
From what you've written, there's a tangible sense (to me) that God, in His goodness, is helping your mind, soul, spirit grasp "Not my will, but Yours." Thank you for that.
How perfect are His ways! Praying for His very special presence for you as you grieve and trust.
Thank you for sharing. I have been thinking about sweet Vivi a bunch. From what I know, she probably will have to go through multiple surgeries, and that will be very difficult for you, for sure. But you will do it. You and Chris will hold her hand and will be strong for her, because she is your perfect girl. You've done it in the past, and this will be similar, but different, because each child is different. What I do know is there will never be a lack of love and support. In time, most likely WELL before she is seeking answers for herself, you will have them for her. And you will help her be her own advocate and you will be paving the way to help more children like her from around the world, find their forever families, because that's what you do, besides love her like crazy, of course!
Thinking of you and sweet, beautiful, perfect Vivienne!
PS. I know someone else mentioned it, but Jen from The Little Couple is AMAZING! She is one of the most inspirational people out there. Right now, she is pursuing her options for having a baby and she will surely be a mom very soon. If need be, VIvi will do the same. But she might not need ANY intervention of that type. TIme will bring you your answers, until then, trust that she will have a WONDERFUL life!
I can understand your mixed emotions, but I think like you said, God will help you through it. You have a happy healthy child and a very loving family and many many friends who are here for you. Smile, as you are loved!
Peace be with you…
Have you read Kelle's post about the day her daughter was born, with Down Syndrome? Please check the link below to her blog. You can click to her post about the day Nella was born. She struggled(es) just as you, but also finds joy.
Thinking of you.
Thank you for this wonderful, very REAL post! You are touching so many lives.
You KNOW God lead you to Vivi. You knew this was a possabily…but to know the diagnosis for sure is so hard! You KNOW God is with you! My prayer is that you will feel Him closer today, for peace with this diagnosis, and strength as you face the future.
Vivi is a precious, beautiful child, and she has a wonderful family!
Oh Stephanie…I am so sorry. I know it is so hard to have those rays of hope suddenly emerge and then to have them dashed. It is okay to grieve over her diagnosis. Sometimes I think with some of my kids, I have not grieved until after they have been home. With adoption, we know up front what the SN is, we become okay with it. But then…sometimes, when we are home and we start to realize that life FOR THEM will be more difficult than we thought, well…it just hurts. We knew our youngest daughter would have to have an amputation of her foot. But after she was home and we saw how well she compensated, it became extremely painful to think about her losing that little foot. I started to think about how she would do some of the things she loved (like the beach) with a prosthetic and it started to hurt my heart. I saw a few people with prosthetic legs and noticed how people stared at them…and knew that was coming for our girl for the rest of her life.
This is getting long–didn't mean to make it about me–just that I DO understand and it is perfectly normal for you to be having those feelings. Big hugs!!!!
I was thinking about Little People Big World too! They all are doing way more than alot of average people in our country. They have college degrees and families. The woman in Oregon has 4 kids that she gave birth to including a set of twins! (3 average size)
God has something amazing for Vivi to do maybe she will be a doctor and treat kids in Ch*na, maybe she will be a teacher…Maybe she will be a mom with 15 kids. She may have to have surgery but none of us is promised perfect health. She may have to use a stool to wash the dishes but who cares! As much as we want our children to be perfect and as much as we want to shield them from pain we can't. The Lord can walk with her (and you) through it! It will be good to remember how you feel now when you are watching her play soccer and softball and when you are watching her get her college diploma and when her daddy is walking her down the isle and when you are holding her children in your arms. How much sweeter will each of the things she does be with this memory! Sheri
Ahhh, my friend….YOU are one of the strongest, bravest, most inspiring people I know!! God led you to Vivi…He knows EVERYTHING about you, about Vivi, about your family & what you all are capable of handling. It's so hard when we get news like this, but it is all for the greater good…His glory…and you, my friend, are gloryfying Him in so very many ways; the way you have blessed my life, as well as so many others, your family, your friends, He will continue to BLESS ALL of you!!
Love ya, girlfriend!!
Hang in there!!
I know that you stand today in a place you never imagined God would take you. And yet that's the important piece of the puzzle. God brought you here, to Vivienne. I look forward to watching what blessings unfold…
A friend told me about your blog. You are on an amazing journey. I grieve with you the diagnosis of your precious Vivi.Your grieving doesn't mean you love God or your child any less, it simply means you realize that we were never created to live a life like this.
When my now 21 year old son was diagnosed at 3 with an Autism Spectrum disorder I too grieved. I grieved for him and I grieved for my self. I know that living in a world that is not our home is difficult at best. It saddened me that he would have to work even harder.
But God constantly teaches me through my son. I wish that he did not have the struggles he has, but if he were any different he would not be Forrest, and I love Forrest! On occasion I still get sad, but have joy and peace knowing that God is using him to impact people for His Kingdom. If I thought this was Forrest's forever home I would live in fear and desperation, instead I cling to the promise of Romans 8:19 and eagerly wait with all creation.
Blessings and Peace
First, thank you for letting me know where to buy the cricket cages- we bought 3 of them! But I really wanted to tell you that I completely understand how you feel.While we knew that SB could be many different things when we accepted Cai's referral, we hoped for the very best for our girl. We thought she was potty trained and that she had free mobility. But then we learned that she was incontinent- and then we learned that she walked, very unsteady on her heels. I felt that little by little "normalcy" was disappearing. But I kept going back to the verse, while in China in 1 Samuel about "do not consider his height or appearance.. man looks at the outside, but God looks at the heart.." And how I spoke so big of this BEFORE we knew all of Cai's medical needs. I know that this is the daughter God planned for us and while I feel very overwhelmed sometimes and dread clinic visits for what they may say- I have to remind myself everyday that none of this is a surprise to God. Love, Kim
They say God only gives your what you can handle and I "read" the love your family has and I know why Vivenne is your daughter..Your family has the love to get you through any situation. I look at the smile on your daughters face and it makes me happy!! You and your husband are wonderful and I so admire you as parents. I love your blog as you are so true.
Hugs to all of you:)
Football and Fried Rice says
I always imagine that God loves us in our brokenness the way that He calls us to love others in theirs. We are all broken – but ONE day – there will be a day – when there is no more pain & suffering and sin.
I just can't wait.
I have been keeping up with your blog over the last few months. You and your heart for our Lord and your family are so beautiful and absolutely admiring. As a single, college student, we don't have a lot of things in common at the moments, but I am storing up your wisdom and joy for a day that we might.
As I was reading this post tonight, I was reminded of Isaiah 26:3, which God placed on my heart last night. I pray that it encourages you to know that our Father is giving Vivi and your family ENOUGH to make it one step at a time. He is our peace and our prize.
You keep him in perfect peace whose mind is stayed on you, because he trusts in you. Is 26:3
Tammy :) says
Vivi is such a blessing to you and to us all, what an adorable sweet little one. God brought her into your family because He knew you could love her like no one else. He will walk through this with you. Don't ever doubt that He knew this was how she would be and that YOU would be able to suppy ALL her needs. I just love looking at her sweet face and realizing Jesus brought her to you so that she could know Him. What an honor! Just love her like you do and everything will work out with Him guiding her and you. Love ya and we are praying for you and for that sweet adorable Vivi! She is so stinkin' cute!!!!!
I'm just now catching up on reading blogs. I can only imagine how it must feel to hear that sort of news about your child- even if you know it to be true, and even if you know that in the end, she'll live a long, happy, accomplished life. God has so clearly placed her in exactly the right family- so that she can bless you immeasurably with her joy and determination, and now you will have to chance to bless her with your fierce advocation for her and relentless pursuit of any possible answers for her! I can't help but notice that it's a match made- quite literally- in heaven! 🙂
But, I love the quote form the blog commenter- it's so true, but so hard to live with sometimes when it's YOU who is broken! You will surely regain your equilibrium with this news and come back to your new normal….and as you do, I'll be praying for you! It's never an easy process, I know, but God is so faithful, and he will meet you RIGHT THERE!
I wanted and wished for just the right thing to say, but I am at a loss. Just know I am thinking about you!
I'm sorry for the devestating news.. But, know that God is in Control! Sending you ((hugs)) and prayers!
You are such a blessing to the adoption community! God knew exactly what He was doing when Vivi joined your family. Her diagnosis is not a surprise to Him. He knows exactly what Vivi needs and He will equip you to meet those needs. Trust in Him to guide you through this unchartered territory. I will be praying for your sweet beautiful girl and for your family!
I am so sorry that I am just reading this now. I guess I have been too busy finding my way over here, that I have not been a loyal blog pal. I just want you to know that I believe from the core of my pinkie toes that God placed this beautiful child in your loving arms for a reason. He knew that you would be the one to get a lump in your throat, to fight for her, to protect her. And, He knew that this precious peanut would change the hearts of the other 8 precious babies God has given to you. Because of Vivi they will love more. They will be more accepting… They will and are making a difference in her world!
I can't think of a better family for God to give Vivi too. You see, you loved her before you ever knew for sure what her entire story was. You obeyed God's call. And, because of that he has allowed you to love her for just the person that God created her to be. He has blessed you greatly! For that I am so thankful!
ALL your photos of her are truly amazing!
"Love the Lord your God, listen to his voice, and hold fast to Him."
I understand how you feel. I 100% knew that my daughter was cleft affected when we pursued bringing her home. Still, I grieved. I think it is only human. I am so glad I happened upon your blog.
Just now catching up from a summer of no blog reading 🙁 I just wanted to send you a hug and an understanding that I know how it feels to have my quiet little fear realized when we came home with Raegan. This Mama's heart knew as soon as we had her but I prayed and hoped that all the tests and doctors would have different answers. I grieved then and still do everytime we get a "new" diagnosis to add to her list. I want nothing more than to change her future but I also KNOW that God has an amazing destiny for her … and her "disabilities" are part of that testimony.
Also, I wanted you to know that we have friends here in Mississippi that have also adopted a little boy from China with dwarfism. He has been home for about a year and a half. I think he is about 5 years old now.
I know this is an older post but I just wanted to tell you how much it touched me.
Melynda Dye says
Did you ever get an official classification of Dwarfism for VIv? Did she have clubbed feet as well? Our son Jude has very very similar resemblances to Viv, and has clubbed feet as well and is classified as having dwarfism, but it has not been specified what type. We too sent a skeletal survey to LA to get results. We are now very interested in gathering info. to adopt from China through “An Orphan’s Wish”. Thanks for any info you are willing to share.
stephanie smith says
melynda, my son also has dwarfism and had clubfeet. did you ever get an official diagnosis? i have some resources that might help you if you want to email me!
I have a friend who told me about your blog, and suggested I read for encouragement…I am glad I did. We just brought our fourth child home from China three weeks ago. We have three biological and one adopted. Our journey has been an interesting one. We felt God calling us to adopt about two years ago. It was been quite a ride, to say the least! We started thinking about adopting from America, then a friend made me aware of a little boy in China that had been born missing his right eye. My middle son was born missing his right eye, and my friend knew that my heart was open to parenting another child that I could relate to his challenges and take care of the disability so well. I was actually really excited and felt very strongly God leading us in this direction! Very long story short, he ended up being taken off the adoption list, due to cancer that was possibly life threatening. (I do keep contact with the place he is now, and he has been going through cemotherapy for about a year, and has since had to have his other eye removed, but is doing better and hoping to get a cancer free diagnosis at his next appt.) Anyway, in the midst of this adoption, my husband came across a little boy from China with dwarfism that he felt very strongly that we were to adopt. Before we knew the first boy wasn’t going to be able to be adopted, we were going to bring home both boys. I had a lot of reservation about this, and God has brought me a long way!! I did not want to admit this, but I wasn’t sure if I wanted to adopting a boy with dwarfism! After praying about it, I didn’t feel like I could go against what my husband was feeling so strongly that we were being called to do. Anyway, after having him home only three weeks, I am already starting to see why God has brought this little boy into our lifes. He is very precious; such a huge personality inside that little body!! Anyway, I still have some things God is working on with me in my heart, and it is just really encouraging to hear someone so honestly and openly sharing her heart about something I can relate with so well! I have not really shared my heart or story with many people, so forgive me if my comment seems a little like I am rambling or all over that place with my thoughts:) I would love to hear from you, or hear more about this!
stephanie smith says
Hi! ive followed your blog for awhile but just happened upon this post about vivienne. my son also has dwarfism and although he has the third most common kind (diastrophic dysplasia), he has a very mild form so he is sort of an enigma too. we dont really know his future either. i chronicle our journey with him at my blog i posted above. he also had clubfeet, which i know your jude had as well. i dont know if youve been in contact with other people who have commented on this post, but if you do know what type your daughter has, i have some resources you might be interested in. feel free to email me if youd like!