• My Heroes (2 More Questions)

    Date: 2016.09.12 | Category: Adoption | Response: 0

    In yesterday’s blog, I asked the girls questions about how they were told about their upcoming adoption and what they thought adoption was.  I also asked them two more questions that I saved for today.  What kept them going and did anyone treat them special?

    Jasmine

    Jasmine’s story is so complex and full of pain and trauma that is beyond anything any child should have to endure.  She has allowed me to share, and she herself has shared on her blog – Flower That Blooms, some of the least traumatic events that have happened to her.  If you have read any of her story, just let that soak in for awhile – these are the least traumatic events.  If you have been moved by her stories, just remember there is so much more that she has endured, things that bring tears to my eyes just thinking about them, her body holds the scars of that abuse and even more so her heart, and still she is a light in the world.

    What kept her going?  When the nannies were offering to help her die on numerous occasions, why didn’t she take that path?  She sat alone in a corner all day long.  She wasn’t allowed to join the kids for meals or school because those happened on a different floor.  She was ridiculed and made to feel like a burden.  So when her time was running out and she didn’t think a family was coming and she knew the horror of what was to come, why didn’t she end her life?

    She told me she never chose that path because she felt a presence that she couldn’t explain.  She felt like her life had purpose, that there was something she was supposed to do.  She never understood it, but she knew she should not take her life.  I have been told by someone who met Jasmine while she was in the orphanage that there was a light about her, that she exuded something good.

    This just blows my mind. I’m not sure I would have been that strong.  I’m not sure I would have kept my cheerful, hopeful personality facing all those adversities.

    Did anyone have compassion for you?   She told me that she remembers a better time with her grandma before she was unable to move.  Things were better when she was younger, she could still sit unassisted and still move a bit.  As her ability to move slowly faded, she became more of a “burden”.  At the age of 5, she was left alone while everyone went to work.  She was moved to the alleyway when family gatherings happened because no one wanted to be bothered by the child who was “cursed” with a disability.  She was allowed to go to school for a little while until everyone complained about her being there.   She was spit on and shunned by everyone.  She remembers a little girl who moved in next door who stopped in to talk to her in the alleyway sometimes.  When this little girl’s parents realized she was talking to “the cripple”, they moved (or at least that was what Jasmine was told).  These are the stories she shares and yet still she is still compassionate and filled with joy.

    She says no one in the orphanage was kind to her.  Whenever anyone lifted her they complained about how heavy she was and what a burden it was to care for her.   Whenever anyone brought her her meal, they complained about bringing food from another floor and having to go out of their way for her.  When others visited the orphanage, the nannies were charming in front of the guests. Those days were special and good, because for a little while she would be treated kindly.  She wishes she could tell stories of someone who truly made her feel special, but she isn’t able to.

    Jasmine has lived through unthinkable trauma and yet she is a compassionate fighter who wants more than anything to change the lives for other children in need.   She was able to live through the worst and hope for the best, for this reason and 1,000 more she will forever by my hero.

    Elyse 2015

    I asked Elyse the same questions.  What kept her going?  She says she was happy in foster care because she didn’t know any better.  She thought she was treated well in China until she came here and felt the true love of a family and even the acceptance and compassion of complete strangers. The realization that she was treated so badly for so many years has been difficult and the anger is palpable.

    Elyse’s “love language” is touch.  A hug and kiss and snuggle and Elyse is in her happy place.  She didn’t have that in China – quite the opposite. Harsh words and harsh physical contact. She thought she deserved it.

    She said she kept going because that is “just what life was”.  That is all she ever knew and it seemed okay at the time. The little ones kept her going. She said she enjoyed feeding and caring for the little kids, especially the babies and toddlers.  While older kids were allowed to play outside on the playground, she played inside with the little children.  Caring for the little ones gave her life purpose and kept her going.

    Did anyone treat you special?  She said her foster grandma loved her.  She knows that now although she was angry at her after she first came home to us and realized that her grandma didn’t protect her from the abuse that was happening.  She has now come to grips with those feelings.  She knows that her grandma probably did the best she could, in the position she was in, and tried to show love.

    The orphanage was different.  Elyse was a burden.  She was told this over and over again.  No one wanted to change her.  No one wanted to help her move.  No one was truly kind.  They just did their jobs and let her know how hard it was to care for her.  Elyse says there were a couple girls that she was friends with and together they tried to make life more bearable.

    Elyse says she loves life.  I can see that about Elyse.  She is a fighter.  She is outspoken.  She is full of love and has a bright spirit.   Elyse knows what is right and fights for it.  She is competitive and full of drive.  She wants to change the world as much as Jasmine does but in her own way.  She will always be my hero for her feisty, spunky, full of love ways.

    img_8456

    JJ is still pretty quiet and I am very careful to not push her for answers she is not ready to give.  I gave her the option of doing this with Jasmine and Elyse.  She asked Elyse and Jasmine why they did it.  Elyse and Jasmine both told her that the reason they decided to blog was that it would let others know what it was like for them as orphans.  JJ said she wanted to help to.

    What kept you going?  She said nothing did.  I told her that I had seen pictures of her smiling when she was very little. I asked her what changed.  The last pictures we got of her were so sad.  You could see the sadness in her eyes.  I asked her why she was so sad and her soft whisper brought me to my knees.  She looked me in the eyes and said, “I almost gived up mama!”

    JJ was separated from everyone.  She was in the hospital side of the orphanage.  She had no friends.  She wasn’t allowed to go anywhere.  She wasn’t allowed a wheelchair.  She was isolated, alone, and afraid.  I told her I saw pictures of her at a table with other kids and she confirmed what Jasmine said – that it was all show for when people visited.  She lived for those days.

    Was anyone kind to her?   She said no one was.  I can believe it because when they handed her off to us on the day we visited the orphanage, their comments made Dan and I cringe. It was like they were happy to be getting rid of her and relived to not do her cares anymore.  It was awful.  JJ was so sad.

    She said they often told her she was bad.  They would “forget” to feed her.  They said she was smelly and none of the adults wanted to be around her.

    JJ is tough.  She stands up for what she believes in.  You should see her now.  I am so proud of my little girl for fighting and holding on until we got there.   She deserves a super hero cape of her own.

    There are many people who tell me this wasn’t the reality for their children in the orphanage.  I say thank goodness.  But this is my girls’ reality.  I know there is a pecking order in these orphanages.  Even among the children if you can not walk, you are looked down upon.  If you are incontinent, it adds a whole other layer of disgust from others.  There are many factors – province, directors, nannies, disability, the list goes on and on.  We are sharing their story to show one side of what happens.  To open eyes and to help others understand that an institution is not a family.  It never will be family.  Children need families.

    “A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.”  – Christopher Reeve

    Maybe your home could use a superhero too!  🙂

  • Thoughts on Adoption (Our Older Girls)

    Date: 2016.09.11 | Category: Adoption | Response: 0

    A friend asked me if the girls had ever talked about what they were told before being adopted, what they thought adoption would be like, and how they feel about it now.  The girls often talk about how they felt before being adopted, how they felt when we met in China, how they felt when they first came home, and how they feel now, but I’ve never put in my blog.  I am going to pose these questions to Jasmine, age 17 – adopted at age 14, Elyse, age 10 – adopted at age 9, Jessica, age 8 – adopted age 8 and write their answers below.

    What were you told by the nannies about adoption before you were adopted?

    Jasmine – Adoption means you get a daddy and a mama.  They won’t do anything for you.  They will tell you to do lots of hard stuff like cooking, cleaning, dig dirt.  You have to be very good.  If you are not good, then they will sell you.  The other people will buy you and you will have to do even harder work or they will send you back to China.  If you come back to China, they will treat you like a pig because you are so fat and covered with hair.

    Elyse – The nannies said that Americans have so much money.  They will give you whatever you want.  They told me it would be great and I should be happy to get to go to America where everyone has lots of stuff.

    Jessica – The nannies say I will have so much money and my parents can buy me so many toys and stuff that I want.

    What did you think adoption/having a family would be like?

    JasmineI had a grandma who cared for me until I was 8.  I sort of knew what a family meant.  I thought I would work hard for the family and maybe they would love me a little bit and be proud of me just a little bit because I helped them.  I just wanted to have a family so I didn’t have to just sit with old people in an institution.

    Elyse – I was in foster care so I knew what it was like having a family.  I thought the people would like me and I would work hard for them.  I thought that the family could help me be able to walk.  The nannies tell me that if I can walk and have babies, then maybe someone will love me and I will have great worth.  Before when I see people come to adopt children, I saw great love but I am not really sure what love is but I think that is what I see.

    Jessica – I don’t know what family is. I was scared because I don’t know what family means but I really want a mama and daddy.  (When I asked her how she knew what a mama and daddy were, she said that she didn’t know.  It was much like a story that she hoped was true.  Elyse said she meant a fairytale.)

    When and how did they tell you that you had a family coming to adopt you?

    JasmineThe boss came in one day and he said “You have a family adopting you.  They really like you.  In a couple months, they will come get you.”  The nannies all cheered because they wouldn’t have to take care of me any more.  They drank beer and celebrated by eating really good food because I would be leaving.  The big kids and the nannies laughed and said, “You are so fat.  We should cook you and eat you.”   I was upstairs by myself and they took a picture of the party and brought it up to me.  I almost cried but I was just happy that I had a family coming to get me.  I had almost given up that anyone would come.  Anything had to be better than this.  The nannies often offered to help me die.  I didn’t want to die.  Family had to be better.

    Elyse The helper of the boss said that I had a family come in a couple days, but it was a very long time that I wait.  She said you will have good family.  She showed me pictures.  She said there is a lot of people in your family.  Other people say it must be an orphanage or a foster home that I am going to.  After I get home, it was a long time before I realized my family was a family and not a foster home.

    Jessica – A girl who is the boss of everything tells me that I have a family coming.  They said that she was so happy that I can go to America.  They were happy that they don’t have to take care of me anymore because I am not good girl and do stuff that is not good and they are tired of taking care of me.

    What did the caregivers say the day you got adopted?

    JasmineThe nannies said I had to be very good or mama and daddy would send me back.  The nannies told me that mama and daddy wouldn’t want me when they saw I couldn’t walk so I had to be extra good.  They told me that if I didn’t get adopted that I would go to the old people place where I can’t have wheelchair.  I would just have to sit on the floor with the crazy old people.  No one would feed me and I would die.

    Elyse – They told me that today is the day you can meet your family.  You will get to walk when you get to America. They tell me that I have to call them.  One girl said that the family would be good to me.  I was very scared.  I kept wondering what this family be like.

    Jessica – They got all my stuff together and they said I was going goodbye.  They told me they would see me later.  I was very, very scared.

    What did you think when you first met your mom and dad?

    JasmineDaddy is so tall and mama has curly, yellow hair.  Mama is so pretty.  I had never seen American people.  Mama and daddy were so nice.  They acted like they cared about me.  They let me pick what I wanted to eat.  I had KFC and Coke.  I couldn’t believe they let me pick my food.  They let me have two glasses of pop.  I wonder why they be so good to me?

    It was so funny to be hugged.  I don’t know what a hug is.  Mama took my arms and put them around her.  I really, really liked to be hugged but it was weird at first.   Mama and daddy said over and over again, “WoAiNi”.  In China you only say, “I love you” if you are dating or married, but mama and daddy say it over and over again. Mama and daddy seem so happy to be with me.  I can hardly believe it.

    Elyse – (Dad wasn’t able to travel on this trip.)  I thought my mama was Stephanie’s mom.  When I found out that she wasn’t grandma but mama I was upset because I don’t want an overweight mama. (Elyse is crying as she says this because it upsets her so that she judged me by China standards.) In China I was told that being overweight was bad and we made fun of people who were fat.   Mama hug me and say “WoAiNi” and I don’t understand what those things are.  I don’t know love but mama show me love.  By the night, I wanted mama to sleep with me because I was scared to be by myself.

    Jessica –  I thought daddy was so tall.  I was so afraid.  Mama held me and I like it but I am was afraid to like it.  I don’t remember some stuff because I was so afraid.

    What did you think about America when you first got here?

    Jasmine Americans eat really weird food like burritos and sandwiches.  They use a fork and knife to eat their food.  I only use chopstick in China.  But I like to use a fork because it is so easy.  I can drink as much as I want.  In China, I can only have two little glasses of water a day because the nannies don’t want to take me to the bathroom, but in America I can drink more.

    I never knew people could drive.  It was so weird to drive around in the car.  I thought the only people who had cars drove taxi.  Mama and daddy had change in the front of their car in the cupholder so I thought daddy was a taxi driver, but I didn’t understand because daddy said he was a doctor.

    Elyse – There is so much food and I have lots of sisters and brothers.  I have lots of clothes and toys.  In orphanage, I never get to pick my clothes but now I have my own.  I liked most of the food and I was so happy that they have corn, fish and lots of fruit.  I came home right at Christmas time and it was crazy.  I don’t know what Christmas means.  It was fun with family and presents and laughing.  Daddy let me fall asleep on his lap.  Daddy tell me that Christmas is about God’s birthday.   I didn’t understand what God means.  Family treat me really good and I am really happy and I really like it.

    Jessica – I do not like America food.  I like the house.  I did not want to be around anyone except Grace and Elyse in my room.  I was so scared all the time.  Everyone is so much bigger than me.  I feel like I don’t deserve stuff or that people will not like me.

    What do you think about adoption now?

    Jasmine (home 3 1/2 years)I think adoption is a great thing.  I like my big family.  I have a really big family and lots of people to love me.  Having a big family is fun.  We can have big parties.  I am so happy that I was adopted.  Everything the nannies told me before being adopted was a lie.  Now I can live my life and figure out my purpose.  I want to help many, many kids get adopted.

    Elyse (home 1 1/2 years) – I like adoption.  I wish all kids could get adopted and see how it feels to be loved.  Before I meet my sisters and brothers I don’t know what it will be like but I am so happy that I have family to play with and have a mommy and daddy.  Family is so very good.  I think family treat me really good.  They always hug me and kiss me.  I can not walk but they tell me I can do anything.  I wish I could tell all kids to not be scared about adoption.  It is a very good thing.  I hope people will understand how scared the kids are.

    Jessica (home 6 months) – I like family.  I like be loved.  I like that no one tells me I’m smelly or bad or that they don’t want to help me.   Mama never be mad that she has to help with my tube or pick me up or help change me.  Mama never say I am smelly.  Mama and daddy say I am beautiful and smart and sweet.  I like the way I feel inside when mama and daddy hug me.  I like that mama carry me places.  Adoption is good.

  • Could I Get Any Further Behind?

    Date: 2016.07.14 | Category: Family Life | Response: 0

    Dan asked me the other day, “How long has it been since you’ve posted a blog?”  He went on to tell me I should add more to two of my longer Facebook posts and share more of what’s been on my heart.  I often post on Facebook because it’s easy to pick up my phone and add a picture and a small comment.  It’s a great way to remember the cute things the children have done throughout the day.  I don’t have to have a lot of time to collect my thoughts or get pictures together, but I still try to continue writing my blog because it’s the journal of our lives.

    I use the blog mainly to remember all that God has done in our lives.  I don’t ever want to forget little blue fingers turning pink or stories of little hearts healing.  Dan and I have been allowed to be a part of some really wonderful stories of hope and healing.  It’s a true blessing, one we don’t take lightly.  But somedays it’s easy to forget all that God has done and to get caught up in the small annoyances of the days.   My words in this blog are a reminder of God’s faithfulness.  My words are there for my kids to read about as they get older.  I want to tell it to my children so they can tell it to theirs.  God’s faithfulness abounds.

    Dan’s words got me to thinking so I decided to take a look at my drafts.   Codey had his wisdom teeth taken out today so it was the perfect time to sit in the quiet and make a list of all the blogs I’ve started writing and haven’t finished yet.

    Here’s my list:

    Max & Elyse Welcome Home!

    Lainey turns 5

    Eli turns 4

    Home from China

    Evie turns 5

    Because Mama Loves Jesus

    Gracie turns 11

    Maisey turns 6

    Hopey turns 17

    Max turns 7

    Liam turns 6

    Cassie is all Grown Up (Man I love that girl!)

    First Year Anniversary – where did the time go?

    Jasmine turns 17

    We are Going to Be Grandparents!

    Top 10 Things That Changed My Life

    Stories told Round the Kitchen Table

    No My Children aren’t Raising Each Other

    Hmmmm….I don’t believe I am doing so well on the “recording their year on their birthday” plan.    It’s not like my life is busy or anything.  After all based on what I’ve been told lately, my older children are raising my younger children so that must mean mama has lots of free time.

    If you’d like to catch up with what our family has been doing, you could check out Cassie’s blog, Thankful For The Crazy  or Jasmine’s blog, Flower That Blooms.

    Cassie has a great blog called “Just in Case” that tells how all of us where feeling before Benjamin’s surgery.   She also is chronicling our summer fun much better than I am.  🙂

    Jasmine’s last blog post talks about her dream.  We are trying to decide where to take Jasmine’s Dream next.  The girls recently reached the 200 children helped mark.  Jasmine’s initial goal is to help 1,000 children.

    Jasmine's Dream

    They have dreams of t-shirt sales and items they can sell in an Etsy shop.  The FAB Four are going to change the world.  They have big plans to advocate and help as many children as they can.  They have great big wonderful compassionate hearts.  It’s fun to watch their little minds work on what they can do.  It would be a wonderful day if Jasmine’s Dream came true – A family for every child.

    I’ll leave you with a couple cute pictures for those of you not on Facebook group, Seriously Blessed By Adoption.

    We celebrated Father’s Day.

    Father's Day 2016

    They loved the fireworks display.

    Fireworks 2016

    And National Cow Day at Chickfila

    Cow Day 2016

    We even dressed up as super heroes and headed to Krispy Kreme for Super Hero Day.

    Super Hero Day 2016

    The kids love dressing up. They wear costumes all the time at home and any excuse to get to wear a costume out in public is “super cool” according to Eli.  It does make for some really fun memories.

    Praying your summer is going well and that many happy memories are being made.  Hold those kiddos tight and give them an extra hug or two.  Take the time to blow some bubbles or lay on a blanket and watch the clouds go by.  I don’t know about you, but I feel like summer is going by much too quickly.

    God bless all of you who have uttered prayers on our behalf.   Thank you for standing by even when mama doesn’t get much writing done.

    Happy Summer!

     

     

     

     

  • Benjamin’s Miracle

    Date: 2016.05.29 | Category: Adoption, Benjamin | Response: 0

    We woke early on Sunday morning to leave for the airport.  The first words I heard were from Maisey, who was adopted with Benjamin, “Bring him home mama.  Ok?” We arrived in Boston on Sunday night.  Benjamin had his pre-op appointment bright and early Monday morning.  He was listed as the first case for surgery on Tuesday.   He was extubated Tuesday night.  We spent one day in the PICU.  He could have gone home on Friday, but they wanted to do one more chest x-ray Saturday morning just to be safe.  This surgery was miraculous but not because it went so well or so quickly BUT merely because it happened at all.

    Ben is home

    How completely humbling it is to watch as your child receives a miracle.

    Mir-a-cle (noun) – a highly improbable or extraordinary event, development, or accomplishment that brings very welcome consequences.

    We heard that word more than a few times while in Boston this trip.  “Can you believe this happened?”  “We are trying to figure out why Ben responded so well.”  “Isn’t this amazing!”  “We can’t believe it!”

    It’s been an unbelievable journey with him.  We went from having no hope to hope for a complete repair.  Why?  Why Ben?  Why our family?   We are no more special or more deserving than the next family.  We have a strong faith BUT so do most of the people I have met on this same journey.  Things happen, good and bad, and it makes no sense to me.  I can’t wrap my head around it.  I can’t see the big picture.  

    Have you ever stopped and wondered why you get to live in America?  Why you wake up free?  Why you have a warm house to live in?  Why you can go to any store and buy your groceries?   Why do you have clean, running water?  Why don’t you live in a mud hut?  Why don’t you have to walk miles to find your water?  Why do you have health care?  We are no more deserving than the rest of the world.  Our faith isn’t necessarily stronger.  ALL of us are sinners deserving of nothing so why do some have and some do not?

    During the past few years I have watched four families in our China Heart Adoption group have kiddos that received heart transplants.  The road wasn’t easy.  It was paved with detours and long waits.  It had more than it’s share of heartache and close calls, and yet there were blessings beyond measure as each of these kiddos received a new chance at life. Their lives and their stories will stay with me forever.  (Lily)  (Rachel)  Joshua and (Rini)

    I’ve seen some of the sweetest children you could ever hope to meet, battle alongside their families who have great faith, not make it out of the hospital.  (Timothy) (Eisley) (Daniel H.) (Teresa) (Zoe) (Rosie) (Daniel)

    I’ve seen others who have been hospitalized for months and months and months and have major complications.

    And I’ve seen some fly through it just like Ben.

    Their faces have stayed with me.  Their stories of faith and fight have moved me.

    There are 277 people on our heart group for families adopting from China.  We are all walking this journey of adoption and faith and congenital heart defects.  We all have a story.  All of us.  Some of us are more public with our blogs and Facebook pages, but everyone’s story gets told to those around them, their family, their churches, their friends, etc.  Everyone of these heart babies have a story.  Every one of these children have touched others lives.

    Every year during February a dear heart mama, Jaime, puts together the 28 Days of Hearts Blog where these families share those stories.  These are stories that encourage others.  When we traveled this past February another mama said she knew me and figured out it was through this heart blog.

    We will never know how many people are touched.  We can not know what the ripple effect of their lives is.  Their lives, no matter how long, have great worth and are worth every minute that we fight for them!

    I have a hard time with sayings such as “there but for the grace of God go I” but at the same time I’ve name a daughter, Grace, because I truly feel she was saved by God’s grace.

    Or “God must have plans for him” because whether a child survives or not God had plans for this child.  And I know God does not mean to harm us, but doesn’t a child’s death mean we are harmed?  and yet Jeremiah 29:11 is still one of my favorite verses.   For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

    Or “God heard all our prayers”  because the reality is God hears all prayers.  Sometimes we don’t get the answer we are hoping for, but God hears the prayers.  We have been on both sides of this.  We’ve prayed fervently and had a son die and we’ve prayed fervently and had children receive miraculous recoveries.  So how do we wrap our head around verses like these  “And I will do whatever you ask in my name, so that the Father may be glorified in the Son.”  John 14:13

    Believe me there’s not a lot worse in the world than picking out a little white casket for your child or wondering how in the world you are going to afford to bury your son.  We prayed hard for Kyle.  Others prayed hard for Kyle.  I don’t know why our prayers weren’t answered like we wanted.  I don’t know why he had to die.  I don’t have to understand the plan to TRUST the plan or to know for a fact that the plan is good.  “My thoughts are nothing like your thoughts,” says the LORD. “And my ways are far beyond anything you could imagine.  Isaiah 55:8 NLV

    I understand there is so much I can’t possibly comprehend.  God’s ways are not my ways, but I do know these little lives, whether they live a long life or a short life, matter.  People are moved by these stories whether happy or sad.  They are moved by the struggles and the pain.  Many, many people come together and pray for these hurting families.  Lives are changed.  More children are adopted.  More people realize they too can do this.  Families are supported.   People are encouraged.

    None of us want to go through the bad but the truth is that is where we turn our lives over.  It’s in the messy parts of life where we can’t figure out how to go on that we draw closer to God.  We are no longer too busy to take the time to pray.  Our hope lies in him.  We can’t go on without Him.  These little lives bring us closer to God.  They make our walk stronger.  They make our faith more real.  They take us so far out of our comfort zone that we can barely breathe.  We turn it over, our pain and our worry.  We let God hold it.  We truly understand for the first time what “cast our cares on Him” really means.  We find peace where it shouldn’t be.  We find strength from Him.  We learn to fight for what’s important.  We learn how to let go of the small things.

    And when the unthinkable happens, we find peace in the hope that eternity brings.  We hold tight to the promises that this is not the end.  We look forward with new understanding of what the joy of reaching heaven’s gates means.

    These little lives matter.  They are worth the fight.  Although we can look at Ben’s recovery as a miracle.   The reality is that all their lives are miraculous.   They have survived the unthinkable.  They have lived with oxygen saturations that leave them blue with clubbed fingers and toes and still they are happy.

    fingers

    They still find reasons to smile even when they can not run and play like the other children.  They still love BIG even though their little hearts are broken.  We learn so much from these little lives.  Each and every one of their lives is a miracle.

    We are lucky enough to have four miracle heart babies in our family.  Four times we have stepped out in obedience.  Four times we have been scared beyond belief.  Eight times we have shown up for open heart surgery.  People ask, “Is this a big surgery?”  Just let me say for the record that any time they open your child’s chest, put them on bypass, and mess with their heart, it’s a BIG surgery.  It doesn’t matter if it last 6 hours or 14 hours.  You never know what is going to happen.  Granted some surgeries have much greater success rates, but it is still frightening.  It is still going into the unknown.

    I want you to understand what it is like to live in my house.  I wake up in the morning and stand at the doorway, while my miracles walk towards me.  I know at any moment it could end, as it could for anyone, and I appreciate every breathe they get to take.

    So although I am singing praises from the mountain tops about Benjamin’s miracle, I want you to understand that every life is a miracle.  Everyone of these heart children’s lives were a miracle.  There are many more miracles waiting for their forever families.  If God is talking to you, and you are scared beyond belief, we’ve all been there, please reach out.  Any of us would love to encourage you on your journey too.

    “God didn’t promise days without pain, laughter without sorrow, or sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way.” – unknown

  • What is a Life That Has Worth

    Date: 2016.05.27 | Category: Food for Thought Friday, Jasmine (Shuang Shuang) | Response: 0

    It’s been a while since we’ve done a Food For Thought Friday. Today seems a good day to start again.

    Jasmine came to us with great hope for a new life. The first two years were pretty darn amazing. She was happy to have a family. She was happy to start a new life with  people who cared for her.   She was filled with joy over being able to learn and do new things.  Then she had her spinal fusion surgery and for some reason, even though we told her over and over again that it would only fix her back, she believed she would be healed and be able to walk. We have dealt this past year with her loss of hope and feelings of worthlessness about being a burden to those around her.

    It’s a strange thing, considering she has never walked, but the loss of hope that she would one day walk, has taken it’s toll on her joyful heart. We go for periods of time where she can be content and turn it around, but her sadness over the fact that her life seems to have no worth because she is unable to do anything for herself except brush her teeth and eat, wins on too many days. Everyone has blue days and we allow her those, but this is much more than that and it breaks our hearts.

    She is angry and she doesn’t know what to do with that anger.  She rages and screams out.  She can be angry for days.  She refuses to talk to anyone, especially a therapist.  Add the fact that no one has been there to teach her how to deal with her feelings, as we do with our young children, and we are left with a very angry toddler in a 16 year old’s body.

    We have spent our days repeating over and over again that we want to care for her.  We have told her, unlike her bio parents and her grandparents, we knew going in what her disability meant.  Dan’s a physician.  We knew as soon as we met her that she had a degenerative muscle disease.  We knew and we loved her and she was then and always would be our daughter.  But being abandoned when you are eight because you are too heavy to carry, has colored our girl’s world.  She believes at some point, it will be too much and we too will abandon her.  She’s striking out because she wants to be in control this time.  She wants to be the person who leaves, but because of her physical limitations she is unable to, so she is left doing the only thing she can which is scream out in anger over a world that is unfair.

    It’s been a very difficult year with her trying to get her to see that her life has worth.  This is not sadness over adoption related issues but rather over the loss of hope of one day walking again.  For Jasmine this year has been much like a person who finds themselves injured and paralyzed, learning how to find your purpose in life, when everything has changed.

    Jasmine recently saw a movie trailer for “Me Before You”.  She was so excited to go see this movie about a young man who is a quadriplegic who falls in love with his caregiver.  Jasmine is a romantic.  She loves romance and happy endings.  She is often upset that she believes no one could love her since she is unable to do much for herself.  I was excited about taking her to this movie, especially when I heard these quotes.

    “You only get one life. It’s actually your duty to live it as fully as possible.”

    “Push yourself. Don’t Settle. Just live well. Just LIVE.”

    But then I read The Mighty‘s article about this movie. The movie ends with him ending his life with euthanasia. Really? We are trying our hardest to show our girl that you are more than your body.  That life is worth living.  We are trying to encourage her and get her to believe that what she was told in China is NOT the truth – that she does have worth. We are trying to show her that her life truly does have a purpose and that she has touched so many other lives.

    Now I have to say that I can not go to see this movie with her because no matter how wonderful the love story portion of the movie is, I can not deal with that subject right now.  She is at just too vulnerable a point.  I know at some point we will have to have this very heavy discussion.

    So for right now, we will continue to discuss what does “a life of worth” look like?

    If you can’t or don’t go to college, does your life still have worth?

    If you don’t marry, does your life have worth?

    If you don’t have children, does your life have worth?

    If you aren’t able to do any of your daily life cares, does your life have worth?

    • When you are left to live with your grandmother, because you are told your mother can not stand to look at you, you doubt your worth.
    • When you are abandoned because you are too heavy to carry any more, you doubt your worth.
    • When you are cared for in an orphanage where you aren’t even worth the time to teach because the school is one floor above you, you doubt your worth.
    • When you are left in a corner all day long because no one can bother moving you, you doubt your worth.
    • When you are left to sleep on the floor with no blankets because someone can’t be bothered to lift you or cover you up, you doubt your worth.
    • When you are told over and over again that the only way your life will have worth is if you walk, then what are you, as a child, to believe?

    These are Jasmine’s “truths” that we have to overcome.  She has talked about these facts often on her blog. (Flower that Blooms) She heard those truths for almost 14 years of her life.  She has heard our “truths” for only 3 years.  I know we will get there.  I just wish I could get her to see herself through my eyes.   I see a girl of great worth, who is compassionate and caring even though the world has let her down.  I see a girl that can change the world with just her words.  I see a girl of great strength and character.  I see a girl when told she can dream about anything, chooses to dream about a day when there are no more orphans.  I see a girl that others should try hard to be like.

    I believe that a life that has worth is a life that touches other’s lives.  I believe that you can have great purpose and never, ever fit the description of what the world believes is a life of worth.  My goal now is to get Jasmine to believe it.

     

     

     

  • Benjamin’s Big Day

    Date: 2016.05.10 | Category: Benjamin | Response: 0

    Here I am again sitting in a waiting room, praying for my child to make it through their open heart surgery.  This makes number 8 for our family.  Every surgery is different, they have varying degrees of complexity, some repairs easier than others, but every single time it is scary.   You can’t have your child’s chest cracked opened, have them placed on cardiac bypass, and think it is just an ordinary, run-of-the-mill kind of day.

    We are extremely grateful to be sitting in this waiting room today.  We never thought this day would happen.  When we first had physicians look at Ben’s file they were all negative.  They said there was nothing that could be done.  Ben had gone too long without a repair and his pulmonary hypertension had done it’s damage to his lungs.  Then when we were home, we got hope in the form of palliative surgery.  Then we were again given renewed hope by some mama’s on Facebook that encouraged us to get a second opinion.  That second opinion brought us here to Boston where we were told they could do a partial repair.

    Ben Ben

    Ben was been born with TGA, VSD, and an ASD.  His pulmonary hypertension kept them from doing the full repair because closing his VSD would likely lead to a pulmonary hypertensive event that would lead to his death. If Ben had been born in the US, he would have had surgery within the first couple weeks of his life.  His repair would have been complete and he would have gone on to live a relatively normal life.  Because he didn’t get the care he needed right away, Ben developed pulmonary hypertension.  His lungs were damaged.  His fingers very, very blue.  At the age of 5 when we were able to have Ben’s first surgery, he was unable to run around the couch and chase his siblings.  Today Ben is unstoppable.

    I have to admit it is hard for me because on one hand I want to stand on the mountain top and shout praise about God’s healing because I know that is what happened; but on the other hand, I am mindful of the parents who are praying just as hard and for some reason, they haven’t got the answers they were hoping for.   I was once the mother praying for healing for her sons and the end result was not what I had hoped for.  I even heard the words “Maybe you just didn’t pray hard enough.”   Those words cut me to the core 28+ years ago.  I know you can have great faith and still not get the answer you want.  I know that although God’s plan is perfect, it is hard to accept at times.  I know that joy and pain go hand in hand and that many lessons are learned through the hard road, but none of us really want to be on that journey.

    So today I am praising God and at the same time praying for those that I know who are waiting for healing.  I have seen too many babies die in the past year and I hurt for those families.  So please, if you are praying for Ben and his healing, please include the families that are hurting from loss today.  God knows their names and is holding them close.

    Rejoice with those who rejoice; mourn with those who mourn.  Romans 12:15

     

     

     

  • Her Kidneys Can’t Heal But Her Heart Can

    Date: 2016.03.16 | Category: Faith, Jessica, William | Response: 0

    Cassie had a long conversation with Jasmine the other day about Jessica’s hospitalization.  Jasmine told Cassie that she believes God knew that Jessica needed more time with just Dan and I.  Jessica needed to know she could trust us and that we would be by her side through it all.  Jessica needed to be held and to be comforted.  She needed to know that she would never be alone in the hospital again.

    image

    We can all see God’s hand in this.

    • The way Dan and Ben knew that Liam was to be our son.
    • How things worked out so files could be transferred and we could add Liam without slowing down our adoption process.
    • How our travel plans worked out so that we had to meet Liam first.  Liam was so good for her.  Jessica was completely shut down and refuses to talk to adults, but she loves Liam.  The laughter they shared together was so beautiful. They would play and play.  It brought such joy to our hearts to watch her just be a little girl.
    • When she didn’t get sick while we were in China.
    • When she had a couple of days at home, before her hospitalization, with Gracie and Elyse to feel safe.
    • When they allowed us to add her on to Grace’s appointment with nephrology so she could be seen right away.
    • When the timing allowed her to be hospitalized over Spring Break so Cassie and Reece were home for Liam to feel safe.
    • When we were admitted with nurses who had already taken care of Jasmine and understood how to care for a child of trauma and were so kind with Jessica.

    There are so many little things that we can see God’s hand in.  If we pay attention and if we give credit where it is due, then we can see miracles in delays and hospitalizations.  We can see how the bad can ultimately lead to good.  Many of us have taken the verse “All things work together for good” to mean that all things are good, but that isn’t the truth.  This verse means God can take the worst situation and use it for good.  It does not mean that if we believe, everything in our lives will be good.

    We saw it with Jasmine’s wound infection and  her subsequent 30 day hospital stay.  We saw something horrible lead to great healing for her.  It was hard at the time to understand why a child who had been through so much had to endure so much more pain, but a year later we see the healing it brought to Jasmine. (Blog) We understand that although this hospitalization isn’t ideal, it can lead to healing and trust for Jessica too.

    We now know that her kidney disease can not be reversed.  We know that she will at some point need a transplant and dialysis.  The good news is her kidney function has improved from 15% -which means dialysis now, to 22%, which means we can wait and watch her closely for now. It could be months or even years before she needs dialysis. This is a gift.  I can’t imagine starting dialysis right away.  We would have done it, but it’s nice to have a buffer of time to bond and for her to feel more secure.

    Her MRI and CAT scan showed many different spinal defects.  It’s complicated and no one can really give us any concrete answers.  Dan believes it falls in the spectrum of caudal regression syndrome.  Genetics is involved and I’m sure we will learn more as time goes on.  Her spinal cord ends at T8, she has severe “s” type scoliosis, there are numerous butterfly and hemi-vertebrae, she is missing ribs, and some ribs are fused, she has grade 4 vesicoureteral reflux of her right kidney.  It’s complicated and we aren’t sure what, if anything, can be done to help her spine.

    The good news?  Her heart is healthy and she is smart as a whip.  She has full use of her arms and hands.  She has a family that adores her and she will never go through anything alone again.

    The unbelievable news?  That the adoption process moved quickly enough that we got to her before she had this last infection.  When her charts were looked over by our urologist, he said, “She’s one bad kidney infection (urosepsis) away from passing away.”  That’s pretty scary.  But she got sick in the US where we could treat her aggressively and get her all of the specialized care she needed.

    The praise God news?  Had she stayed in China and had this infection she may not have survived. If she had survived, the infection could have accelerated her kidney failure to the point that she would have died without dialysis (she would not have been offered dialysis in the orphanage). If we had not been granted an “expedite” on her adoption – we may never had made to her in time. God provided.

    The great news?  We can help her heart heal.  Her sweet personality shines through.  We have seen her slowly start to trust.  She reaches out for us.  She shyly smiles and doesn’t shake her head no when we say “I love you”.  She still doesn’t really talk to any adults, but she’s figured out how to ask for what she needs with signs and pointing.  She’s asked to be held.  She lets us tuck her in.  She allows us to hold her hand and stroke her hair.  She reaches out for me when she is sleeping.  She will ask me for help.

    This is huge from where we were in China where she hung her head and wouldn’t look anyone in the eye.  Knowing what I know from Jasmine and Elyse, I know she was told she was worthless.  I can see it on her face.  I see it with the way she hangs her head.  How she refuses to look in a mirror.  How she shakes her head no over and over again if you say she is pretty.

    JJ & Liam

    She has come along way since her admission last week.  The look on her face just melts my heart.  Sometimes she forgets that she doesn’t trust.  Sometimes just for a few minutes you see her truly feel the joy of being loved.  She soaks it in.  She wants it so much.  Someday she won’t instantly throw those guards back up.  Someday she will know she is safe and loved.  Someday she will know we can be trusted with the great gift of her love.

    As Dan jokes – “Resistance is futile, you will be assimilated. We are the Ellsburys”… yes a bit of Star Trek humor. We are a bit tired.

    Someday our sweet girl will know her worth.  Someday she will know she is cherished.  She will understand the peace that comes when bathed in unconditional love. Someday she will play and laugh and dance in her wheelchair and just be a little girl.

    Someday…

  • The Unfairness of it ALL

    Date: 2016.03.14 | Category: Jessica | Response: 0

    It’s all so unfair.

    I just took her downstairs to have her sedated for her MRI and CAT scan.  We should be at home bonding.  We should be at home where she can learn she’s safe and she can learn to trust us.  Instead I had to lie her on a cart and watch the fear in her eyes as they hooked her up.  She doesn’t understand why we are doing all these tests.  Through my broken Mandarin I can tell her she is brave and strong and that I love her but it isn’t enough.  The girls have tried to explain that she needs these things to get better, but I can see in her eyes, that it doesn’t make sense.  She’s withdrawn and sad and just done with it all.

    I’m mad!

    Angry!

    Frustrated!

    Overwhelmed!

    Tearful!

    Heartbroken!

    She finally smiled last night.  After three long, miserable days, she smiled and all was right with the world for a moment.   Honestly, there’s nothing like seeing her smile. Maybe it’s because you have to work so hard to get a smile. Maybe it’s because you know how sad and hurt she truly is. Maybe it’s because her whole face just lights up.  Whatever the reason, it’s like winning the lottery to be able to bring a smile to her face.

    Life has not been fair to our little girl.  Had she been adopted before the age of 4, she probably could have avoided a transplant.   Had she had the proper nutrition, her bones wouldn’t be so frail.  Had she had the proper dental care, all of her teeth wouldn’t be rotted and need to be pulled.  Had someone done PT, her legs wouldn’t be so contractured.

    Because of this lack of care, we are now talking g-tubes and dialysis and transplants, proper nutrition and how many meds she will have to take.  We have to discuss PICC lines and ports, weekly shots, blood draw, catheters, and physical therapy.

    I knew all these things when we were considering adopting her. I read about transplants. From Grace, Dan’s dad and my mom, I knew about kidney disease and dialysis.  I’ve watched the people I love suffer from it.  I am not naive.  All of those things scared me and truthfully almost kept me from proceeding.

    I am busy.  I have a ton on my plate.  How could we possibly spend three hours, three times a week at the hospital?  How could we spend even more time at the hospital for hospitalizations?  What would be the cost with insurance and medications?  How would we continue to homeschool?  Would the other kids understand one more child taking us away from home for hospitalizations?

    Even though those fears almost made me not proceed, seeing this face changed all of that.

    JJ

    This is our daughter.  We will fight for her.  We will stand beside her.  We will hold her hand.  We will comfort her.  We will cry tears for her.  We will celebrate with her.

    I am sitting here beside her in the hospital.  I have just been yelled at again.  She doesn’t necessarily like me, let alone love me.  She barely knows me.  I spent an hour trying to get her to take her meds.  I called Elyse and had her translate “You have to eat and take your meds or we can’t go home.”   Her response was to shake her head no. She would take a med, take a sip of water, and hold the drink in her mouth for ten or more minutes.  I finally let the nurses take over and went to the bathroom to cry.

    I don’t want people to force her to do stuff.  She’s had enough of that in her lifetime.  I want her to be able to trust me enough to just take them.  I want to fluently speak her language so I can convince her that it’s ok.  I want to go back in time and pick her up as a baby and get her the medical care she so desperately needed.  It’s just so unfair.

    I know it would have been easier to say “No” to adopting her.  I could have gone on with my life and some day in the future, after many tears were shed, she probably would have just been a little girl in a picture who stole my heart.  I would have never known what she was going through.  I would have prayed for her and as the days passed, slowly her memory would have faded.  She may have still been advocated for or she may have fallen off the radar.  Her kidneys would have failed and she would have died alone.  Some one may have posted about another orphan who passed away or maybe no one would have even noticed.

    I could have done that.  Lord knows I have cried enough tears over 100’s of children’s pictures that have touched my heart. We have advocated for children.  We have fervently prayed for children when we realized that God was not saying “Yes” to our family.  I have also scrolled by thousands of pictures of children who wait, barely blinking an eye.  Why?  Because there are many thousands of children who wait on advocacy sites and on agency lists.  Because there are millions of children in orphanages. Because it is just so overwhelming.  What can I do?  How can I make a difference?  There are children all around the world that wait.  If you take it all in, you could lose your mind.

    But JJ wasn’t just another picture.  She was the daughter God lead us to.  She IS my daughter even if I pretend she’s not because I am uncomfortable.  God’s call isn’t false just because I am scared.  If I truly believe God has called me to her and I do nothing, it is no different than taking any of our other children from our home, taking them half way around the world, and leaving them there alone and without medical care.  I can’t even fathom doing that so how could I leave her?

    It is so unfair to these children.  They had no choice in the country that their parents lived in. They can’t do anything about lack of medical care or support.  They can not control the issues that brought them to the orphanage in the first place.  I think back to when Grace was diagnosed with Lupus that had affected her kidneys.  Dan pushed for treatment and they did the biopsy right away.  Grade 4/5 glumeruleonephritis was found.   Gracie’s kidneys healed because it was found soon enough.  Just a little more time and it would have been too much, the scar tissue would have been formed, and her kidneys would have been irreversibly damaged.

    Why does Gracie get to go through her life without dialysis and a transplant?  Because she was born in America to a family where her dad is a physician and knew enough to demand she be seen right now.  There was nothing Gracie did to deserve it.  She was just lucky enough to be born in the right time and at the right place.  She is no more deserving of treatment and a happy life than JJ is.

    It is just unfair!  Totally and completely unfair!  I just want to scream and stomp my feet and throw a plate or two, but instead I will sneak off to the bathroom and have a good cry.  I will dry my tears, put a smile on my face, and try my darndest to get her to a place of trusting, loving, and healing.  We will figure out the right treatments.  We will stand by her side and we will help her fight.

    Why?  Because she’s worth it!

     

     

  • Sharing a Facebook Post

    Date: 2016.03.13 | Category: Adoption, Benjamin | Response: 0

    I recently posted this on our family’s Facebook group “Seriously Blessed by Adoption”.   It seems to have resonated with others.  I have never had a a post be liked or shared so many times.  To be honest, I’m not sure why.  I have said these same words many times, in many different ways.  Maybe it’s because it shows a daddy’s love for his son.  Maybe it’s because so many of these sweet boys wait.  I’m not really sure why but I thought I would share it with those who just follow us on my blog too.

    China trip 2012 086

    When we decided to adopt Maisey, our agency told us of a program China had started where you could adopt two at once. We prayed about it and discussed it with our family. Hope really wanted us to adopt a little boy with a heart defect like hers and since Dan and I were older and absolutely positive we would never be going to China again, we decided to proceed.

    Every time I think about how positive we were that this would be the completion of our family, I chuckle. It’s a good thing I had no clue where God was going to lead us because I think I would have ran the other direction.

    It was life changing when they placed Maisey and Ben in our arms. It was as if my eyes had suddenly been opened. Here was a 3 1/2 year old little boy, who wouldn’t talk, refused to let you call him his Chinese name, was starving and ate for hours after we got him. Ben slept with his bowl and food in his hands for months. With Maisey they threw her in my arms, like she was nothing, I can’t even explain it. To this day my heart hurts over the utter worthlessness with which she was treated.

    I can still see Dan pacing in the registration office. Every other child had already arrived. I had been holding Maisey for quite a while at this point. All of a sudden Dan sees him outside the door, as soon as Ben walked through that door, Dan picked him up. That is not how it is supposed to work. You are supposed to wait until they hand them to you. There is paperwork and procedures that need to be followed. I often wish I had that moment on film, but it happened so fast. Four years later I can still see it and it still brings tears to my eyes.

    Ben went to Dan and he was instantly at home. When we visited the orphanage two days later, Ben refused to go to anyone. He held on to Dan for dear life. What makes a child hold on to a 6 foot tall, bearded, white man and refuse to go to anyone who has cared for him during his whole life? Ben buried his head in Dan’s shoulder, wrapped his arms tight around Dan’s neck, and hid.

    During those days, my eyes were opened to how much a child wants a family. My heart would never be the same again. I walked through the halls of that orphanage and knew most of those little faces would never know what family means. Just because you have never known the love of a family doesn’t mean you don’t want it or know, deep down, that there is something missing.

    I often wish I could touch people on the shoulder and have those emotions or memories transferred to them. They would never be the same again. I thought I knew before we traveled. I thought I got it, but what I know for a fact is I was clueless. Completely clueless!!!!

    Everyone needs to feel safe and loved. This is one of my favorite pictures from our trip. Ben loves his daddy. Ben found his safe place.

     BenBen and daddy

     

  • Jessica and Liam’s Update

    Date: 2016.03.12 | Category: Adoption, Elyse, Jessica | Response: 0

    Life has been interesting since we got home on the 4th.  We arrived home Friday night and Sunday morning Jessica awoke with a temperature.  We  already had an appointment scheduled for Monday morning with the pediatrician so we started antibiotics and planned to see the pediatrician Monday morning for some lab work.

    Her lab work was worse than we had hoped. Dan called the nephrologist and urologist at the children’s hospital and they fit her in for an appointment on Wednesday.  Grace and Elyse, who were trying to belp, had told Jessica that this was just an appointment and that she would not be admitted to the hospital.  Jessica was comforted by that.  She had been hospitalized and gone through surgery alone in China.  She was very fearful.

    We had her appointment where they changed her Foley catheter and drew labs. We left with a plan in place to get extra tests and go from there.  Unfortunately, as we finished eating, our phone rang and they asked us to come back to have her admitted. The lab results had come back and they were worse than Monday’s. She is extremely anemic and her labs were showing her kidneys to be working at about 15%.  We needed to start an IV and try to stabilize her electrolytes

    The good news is that Jessica (JJ) had a few good days at home and had bonded with Gracie and Elyse.  JJ did not want to be part of much that was going around the house.  She doesn’t like American food. She doesn’t necessarily like adults. It’s been interesting to say the least.  We have never had a child that wasn’t at least pretty comfortable by the time we got home from China.  It’s going to take JJ a very long time to trust us and to know that we truly love her and will never leave her. Add on a hospital admission and the time to trust us extends even further.

    image

    On the other side of the coin is Liam.  He looks like he has been here forever.  He is right in the middle of the littles all the time.  He likes the food, especially the treats big sister, Cassie, bought him.

    image

    He likes the kid’s schedule. He likes the toys they play with.  He likes to snuggle up with them to go to sleep.

    image

    He likes pretty much everything.

    image

    I am thankful that he has adjusted so well. It would have been horrible to leave him otherwise.  He loves to FaceTime and show me what he has been doing.  He is the happiest, silliest little boy.  Everyone adores him!

    The prognosis for JJ is complicated.  We don’t know where her baseline will ultimately end up.  Today her labs were better and her kidney function was about 20%.  The formula they use to figure your GFR takes many things in to account.

    Dan was at work today and the nephrologist sat and talked with me for quite awhile about what was to be expected in the future.  Of course there are many variables but we know for certain she will need dialysis and ultimately a transplant. There has been too many years of damage and scar tissue.  We had hoped to get to her in time to reverse some of the damage and avoid a transplant. I know now that isn’t possible.

    Her bones are almost see through from calcium loss and lack of vitamin D.  She is extremely anemic and will need weekly shots to help her produce red blood cells.  The doctors are trying to avoid transfusions because of the need for a transplant.

    She’s very sad and hasn’t been eating or drinking very much.  Elyse reminded her that she has to be able to take all 5 meds by mouth and drink and eat well to get to come home.  This afternoon she did much better.

    The nephrologist said he isn’t sure whether she will need dialysis in a month or a few months.  We will know more in the coming days.  We know anything under 50% kidney function leads to dialysis at some point in your life.  We know she will lose approximately 3% kidney function a year. We know lower than 20% and they start talking transplant.  We know a number of 15% gets you dialysis.

    She will have a sedated MRI and CAT scan on Monday to look at her back and hips.  We were lead to believe she had spina bifida but that isn’t true.  Her little legs are very contractured and very, very small.  Her back has many fused and misshapen vertebra.

    Genetics, orthopedics and neurosurgery have been called for consults and they have ordered the tests they need to figure this out.

    From her X-ray, we know she has pretty severe “s” scoliosis.  From the renal ultrasound we know her kidneys are very small.  At one point the lab tech left to get the physician and the physician informed me the kidneys were the size of a newborns and he wanted me to get my husband, who is a physician, so he could talk to him.  They aren’t quite that little, but they are very small.

    She needs urodynamics and other tests to see what else is going on. It’s a lot for a little girl, who is already hurt and fearful, to go through.

    She will let me comfort her after her procedures.  This picture is after they placed her PICC line.  When I rub her head or hold her hand, she pretends to be asleep so it isn’t like she is giving in.   You will see her look out under her closed lids and shut her eyes really fast and she sighs and leans into me.  It’s her way of being comforted without acting like she likes it or needs it or giving up control.

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    She is one tough little girl.   She is spunky and stubborn and a fighter.   I know this is what has kept her alive and fighting.  I respect that and will give her the distance and time she needs to feel safe.  Someday she will accept our love and know what family means.

    We knew the possibilities going in.  We were as prepared as we could be.  We were hoping we were wrong but knew in the end it didn’t matter.  She is our daughter and you fight for your children.

    Hopeful for more time for her to adjust before dialysis needs to start but we will do what is necessary to give her the very best chance at a happy, hope-filled life.

    Because she is worth it!!!