Archive for the ‘Jessica’ Category

  • Adoption Questions Part 3

    Date: 2017.05.22 | Category: Adoption, Elyse, Jasmine (Shuang Shuang), Jessica

    The girls and I have been talking a lot about what their days were like in China.  We decided to share their answers on the blog so others could understand what their days were like.  They want others to understand that these children need a family.  They need homes and love.  The greater the child’s disability the greater their need for someone to care for them.  All three girls of our girls were in wheelchairs and that plays into how they spent their days and how they were treated by others.  This post does NOT describe every child’s life in an orphanage, this is just our girl’s experiences.

    The following questions were answered by Jasmine (age 17 – adopted age 14), Elyse (age 11 – adopted age 9), and JJ (age 9 – adopted age 8).

    What time did you wake up every day? 

    Jasmine – We woke up at 7.  On Monday every week I would get up at 5 for a shower.

    Elyse – We woke up at 6.

    Jessica – I don’t know.  I never saw a clock.  It was light out.

    What did you eat for breakfast?

    Jasmine – We ate noodles every day for breakfast.

    Elyse – We didn’t have breakfast, only the babies ate bottles.

    Jessica – I didn’t eat breakfast.

    What did you eat for lunch?

    Jasmine – We had rice, tofu, meat, and green beans.

    Elyse – Sometimes we had soup or baby eggs, and rice.  We had veggies like bok choy and seaweed.  Sometimes special we had shrimp.

    Jessica –  I would eat soup with carrots and peas and wet rice (?).

    What did you eat for supper?

    Jasmine – We had pork every night with rice and seaweed soup and sausages.

    Elyse – Seaweed or tofu soup, congee, or rice.  Sometimes we would have meat – chicken or pork.

    Jessica – We would sometimes have chicken feet, pork, and soup.

    Were there ever any special treats?

    Jasmine – Chicken feet on New Year and Children’s Day.  Sometimes visitors brought crackers.

    Elyse – Chicken feet when my foster grandma visited.  Candy from visitors.

    Jessica – Visitors brought candy and crackers and weird milk.

    Did you ever have fruit?

    Jasmine – Bananas and apples for snack.  They would also let us have juice and the Chinese cracker.

    Elyse – Banana and apples and watermelon and sometimes mangoes.

    Jessica – Bananas and apples and oranges.

    What did you do during the day?

    Jasmine – Got up at 7, I wore the same clothes I slept in, breakfast was at 7:30, then I watched tv with everyone, sometimes I read to the kids and played with them, we would eat lunch at 12, watch more tv, take a nap at 1, snack at 3, watch more tv, then we eat dinner at 5, and watch more tv until 9 and then go to bed.   We were always in the same room except for sleeping.

    Elyse – I got up at 6, they put me on the toilet for a long, long time, then I would get up and help feed the babies, then back to the toilet,  I ate lunch on the toilet, and they would let me get up and feed the babies, put me back on the toilet, and I would eat supper on my little tiny table while on the toilet.  I would read books while sitting there.  It was so boring.   I would feed the babies before bed, change their diapers, and I would go to bed really late at night.  About once a week I would get to go to the school room and learn.  I like to learn.

    Jessica – I woke up when it was light outside.  I played with toys by myself.  I ate lunch.  I took a nap.  I watched tv. I ate supper.  I would play on my scooter and go around in circles.  I would go to bed when it was dark.

    Did you ever brush your teeth? 

    Jasmine – Once every 3 months or so.

    Elyse– Never brushed my teeth.

    Jessica – I never brushed my teeth.  I never ever see a toothbrush.

    What about clothes?

    Jasmine – I would wear the same clothes for one or two weeks.   The nannies always picked out my clothes.  If I asked to wear a dress the nannies would tell me that I don’t deserve a dress because I can’t walk.  I could wear nice clothes when someone was visiting.

    Elyse – I would wear the same clothes for close to a month.  I would still have to wear the same clothes if I got urine on them.  (Elyse is incontinent from spina bifida.)  I sometimes smelled so they made me sleep in the baby room but that was okay because I loved the babies.  The nannies said I can’t wear nice clothes because I can’t walk and I pee on my clothes because I have to wear a towel no diapers.  The nannies would pick the worst clothes for me unless someone was visiting and then I could wear nice clothes and as soon as the visitor left I would have to take it off and put on my dirty clothes again.

    Jessica – I changed my clothes when I got wet every day.  I wore yucky towels for diapers.   They hurt and was tied really tight.

    Did you play outside?

    Jasmine – No I could only sit at the window and watch the other kids play.  I wished I could play so much but I was upstairs and they couldn’t get me downstairs.   The boys would make fun of me for not going outside.

    Elyse – I wasn’t allowed to play outside with the other kids.  But it was okay because I got to take care of the babies.  Every time I looked at the babies I got upset because the nannies said they hate babies, but I love babies.  Who wouldn’t want a baby?  One time I took care of a baby a lot.  She was always happy with me but then she died because her head got too big.   I feel it was my job.  I liked my job.  The other girls thought the babies were yucky because they spit up and peed on them but that don’t bother me at all.

    Jessica – Sometimes for a little bit.

    What time did you go to bed?

    Jasmine – I went to bed at 9:30 because the nannies want to watch the tv.

    Elyse – I would go to bed sometimes late like 12:30.

    Jessica – I would go to bed when it was dark.

    Who did you share a room with?

    Jasmine – I shared the room with three other girls.

    Elyse – I shared the room with 20 babies.

    Jessica – The little kids.  There was lots of them.  They were little kids who couldn’t walk.

    Did you ever get to leave the orphanage?

    Jasmine – On Children’s Day every year we got to do fun stuff like go to the zoo, eat KFC, and go to a movie.

    Elyse – I never left the orphanage.

    Jessica – They tell me they would take me but they never did.

    Do you have any happy memories from the orphanage?

    Jasmine – I liked to play with the kids and read to them.

    Elyse – Taking care of the babies.  I loved the babies.

    Jessica – Feeding the babies bottle.

    What was the saddest thing for you?

    Jasmine – The nannies would hit me.  They would use a stick from the big apple in the box that China has.  They would sometimes tell me I was bad so I could not eat.  They would throw me on the bed and in the shower.  It was so scary because they would just throw me.  I didn’t want to take a shower.  Sometimes they make me sleep on the floor because they tell me I can get up myself but I can’t because I can’t move by myself.  When they would try to stretch my legs out to make me walk, but I couldn’t.  It really hurt.  When the kids and the nannies were really, really mean to me.

    Elyse –  When the baby died when I was holding it.  They baby just stopped breathing and the nanny took the baby away and brought in a different baby.  It was so very sad.  It made me so upset.  The baby’s head was just so big.   One time the nanny got mad at me and cut off the skin on my fingers.  She said I was going to tell the boss on her and she wanted to scare me.  When they would throw me on the toilet and on the bed and the bathtub.  I hated them throwing me down.  There is other really sad stuff I don’t want to talk about.

    Jessica – I hate the doctor!   I don’t like the nannies yelling at me.

    Did you have any friends?

    Jasmine – Liuli and JoLiy

    Elyse – Just the babies.

    Jessica – Yes, I can’t remember their names.

    Anything else you’d like to say?

    Jasmine – The nannies really didn’t like me at all.  They didn’t like taking care of me.  They always say I can walk and that I am just pretending so I can be lazy.   The nannies said people will never like me if I can’t walk.  They say I will never get married.  I am happy to have a family now.  I wish all the kids could have families.

    Elyse – The nannies tried to stretch out my legs.  They try and try to stretch them out.  (Elyse has contractures on both legs but she has no feeling in her legs.)   Orphanage life is not good for kids.  I wish I could change the world and I would pick that no babies would die or that there would be no evil people to hurt other people.

    Jessica – Orphanages are bad.  The worst place with ugly pink bathtubs and bad doctors.

     

    “Once our eyes are opened we cannot pretend we do not know what to do. God, who weighs our hearts and keeps our souls, knows we know and holds us responsible to act.” Proverbs 24:12

     

     

     

     

     

  • Happy Birthday Jessica Jean

    Date: 2017.01.15 | Category: Jessica

    Last year I did a poor job chronicling our lives.  My blog is my journal for our children.  I want them to have their memories written down for the future.   I vowed that this would be the year that I stayed on top of everything and then we got strep and I was already behind.

    Now its time to catch up…

    When we first received JJ’s file, I looked at her birthdate and it took my breathe away.  One day after my mama’s.  Ever since my mom passed away January 5th has been a sad day.  My mom, my mother-in-law, and I always did craft sales together at Christmas time.  We mainly did Christmas items so on my mom’s birthday we would load up the car and head out to find all the after Christmas items on sale for our craft sales the next year.  We would eat at her favorite restaurant, Red Lobster, and we would have the best girls day out.  It was one of my favorite days of the year.  It was just fun to celebrate mom and hang with my friends who just happened to be my mom and my mother-in-law.

    I miss my mom.  I miss those days.  I miss staying up late and crafting.  I miss setting up our display at the sale and hanging out and eating warm chocolate chip cookies while we caught up with our friends at the sale.  I miss all of it and my mom’s birthday is a constant reminder that it isn’t going to happen again.  So when I saw JJ’s birthday, it made me sad because I know how sad I am on January 5th and I wondered how I could be happy on the 6th, BUT God in all His infinite wisdom knew better.  He gave me a little bundle of joy that eased the pain of January 5th by allowing me to celebrate January 6th.

    Psalm 30:5    Weeping may tarry for the night, but joy comes with the morning.

    And what joy JJ has brought to my mornings.

    Jessica Jean is the name she was given but she is JJ or Little J.  She is a bundle of joy and her smile lights up our house.

    But we didn’t start that way…

    Her first month home included a hospital stay where she learned we would never leave her side.

    It took her a while to warm up to the idea of family and what that meant.  I think we overwhelmed her.  She had spent a lot of time alone in the orphanage.

    She felt safe with Gracie and Elyse and learned what the love of a big sister meant.

    She slowly learned to trust her mama…

    and her daddy.

    He taught her how to dance

    and the wonders of a treasure chest full of her favorite chocolate treats.

    Slowly as the year went by we saw her start to loosen up,

    and oh the joy she brought to our days.

    She got her first pair of sparkly pink shoes, a brand new wheelchair,

    and a very big pink bed.

    She had her first picnic.

    She met some new friends.

    and learned how to play princess.

    She went to her first state fair concert.

    Which got rained out and she learned what a summer storm was as we hid out under the grandstand where she learned mama would always keep her safe.

    She had her first time dressing up as a cow for Chick-fil-A’s Cow Appreciation Day

    and as a pirate for Krispy Kreme’s Pirate Day!

    She went to her first movie and ate her weight in popcorn.

    She celebrated America

    and watched her very first fireworks display.

    She dressed up for her very first Halloween.

    and had her first carousel ride.

    Mommy and daddy learned how to make chicken feet just the way she likes them.

    She learned about Thanksgiving and Christmas and loved decorating the tree.

    She played a wise man in our church’s Christmas pageant.

    She enjoyed playing in her first snow.


    She enjoyed her very first birthday party ever.  This was the first time that someone had celebrated the day she was born and she was overcome with emotion but by the time it came to blow out the candles on the cake, she was getting into the celebration.

    And she loved her doll house that was bigger than she is.

    JJ has learned that big sisters are a pretty big deal.

    and she’s got a bunch of them that spoil her silly.

    What an amazing, incredible, wonderful, blessed year this has been.

    This sign says it all.

    Happy birthday Jessica Jean.  Mommy and daddy adore you and your feisty, spunky, quiet, brave, spirit that brings such joy to our lives.

     

  • Her Kidneys Can’t Heal But Her Heart Can

    Date: 2016.03.16 | Category: Faith, Jessica, William

    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.

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    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

    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!

     

     

  • Jessica and Liam’s Update

    Date: 2016.03.12 | Category: Adoption, Elyse, Jessica

    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.

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    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.

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

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    He likes pretty much everything.

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    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.

    image

    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!!!

     

     

     

     

     

  • So Many Thoughts

    Date: 2016.03.01 | Category: Adoption, Jessica, William

    I’m going to give writing a blog post on my phone a try.  At the rate this is going with all my typing errors, you can look for this post sometime mid-June.

    This adoption trip has been interesting and one might say almost fun.  It’s been the most vacation-like of any of our our trips.  The first trip in 2012, was so nerve wracking, mainly because we had no clue what we were doing.  Plus, Dan got food poisoning on that trip so we didn’t do a lot of sightseeing.  We just hunkered down in the hotel room.

    The second trip, when we adopted four at once and three were much sicker than we thought, was a strap yourself in for the ride and hope you get home safe, kind of a trip.  Plus, whenever we went out people were beyond unkind to Jasmine.   They yelled things at her, they spit at her, and everytime we went out we had to form a circle of protection around her to keep people away.  Even going to the buffet was a nightmare.  We had very nice servers who would save her a spot behind a wall so that no one could see or her yell things at her while she ate.  Her province was the worst for this type of behavior.  It got a little better once we got to the China Hotel in Guangzhou where there were lots of adoptive families but it still wasn’t good when we ventured outside the hotel.

    Elyse and Max’s trip was fairly simple except that Max had no idea how to NOT get into everything and Elyse spent most of the first part of her trip trying to figure out how to call her foster grandma.  In a room with many breakables and buttons to push, Max didn’t make it very relaxing. It’s hard to toddler proof a room when your toddler is 6. Plus, Dan wasn’t able to travel with me that trip.

    This trip, Mr. Charming readily accepted us as his parents after his foster mama told him goodbye and to go and be happy.  He ran to us saying mama and baba and has had very few tears during this trip.  He adores his baba and has said the word “baba” (daddy) at least a 1,000 times.  He’s only cried when we went back to offices to do paperwork. We were told by his teacher that he is fearful of being taken back because his friend was disrupted and he also cried when I held a baby at one of LWB’s healing homes.

    Dan and I are on LWB’s board of directors and we were so happy to see the healing homes in action.   I had my heart stolen by quite a few of those sweet babies and especially sweet little Christine!  I was so happy to hear that she has a family in progress. I can’t say enough good things about the nannies in these homes.

    All in all William has done extremely well.   He smiles most of the time.  He says “thank you and hello and good morning” to almost everyone he meets.  He says it in both English and Chinese. He is sweet and sensitive and a great little boy.   The fact that he has waited almost 6 years to be adopted blows my mind. He is so smart and cute and so able to do anything he puts his mind to.  He already knows all his siblings names (no small feat), has learned many English words and corrected my Chinese, and says he wants to be a doctor.  I can’t help but have my heart hurt for his bio parents who let him go, probably to get him the medical care he needed.   It seems so unfair that I get to have this treasure as a son and they can not.

    William Daddy Healing home hug (1)

    Jessica has been a bit of a different story.  Our little girl has obviously been hurt.  She does not like adults and especially men.  She had spent time in the hospital alone.  She’s been through surgery alone.  She’s been isolated away from the other kids in the orphanage. She came to me and let me hold her but it was more like she had no choice than she wanted to.  It’s going to take a lot of time to heal her heart and calm her fears.

    That being said, by the time we went to the orphanage for a visit four days after we had met her she wouldn’t go to anyone there.  She was upset when I had to hand her off to have her foley cath changed.  She came back to me and there was a disagreement between the orphanage staff and Dan.  They had the right size foley but the wrong size connecting tubing.  They wanted us to hand her to the physician who wanted to take her to the hospital to get the right tubing.  He said he would be back in an hour.  Dan, who is a physician, said it made no sense because it didn’t matter that the tubing was a smidge bigger and he wouldn’t allow it.   They disagreed and were completely disgusted with us for refusing.  Dan was not about to allow anyone to take our girl again.  I do not believe we will be welcomed back there any time soon.

    By the time we went to meet the director before leaving the building, she was so quiet.  They asked her to lunch about 10 times.  They tried hard to talk her into it but she kept refusing.   We left the decision up to her and by the time she got to the van she was worn out emotionally.   She laid her little head on my chest and fell asleep.  It was a turning point and a step in the right direction because she knew she has a voice with us and we would protect her.

    We’ve slowly made progress with her.  She will say “xie xie mama” (thank you mama) to me when I hand her items and when I say “wo ai ni” (I love you) she shakes her head yes now. When I pick her up first thing in the morning she forgets to be afraid and lays her little head on my shoulder and hugs me. Then it’s almost like she remembers she is suppose to be afraid and lifts up her little head. But it’s those moments when I know there is hope.

    Jessica Pink

    She’s amazing with Liam (William) though. She is the big sister even though he outweighs her by a good 15 pounds.  She talks to him non-stop.  They laugh and giggle and play all day long.  They are already true siblings and we’ve caught them doing the “don’t copy me” game which seems to be universal.  It was pretty funny.  He kisses her and she pats his hands.  She encourages him and tells him to finish his dinner and to throw away his papers. Liam has been good for her.  God knew what He was doing. This trip would have been much harder for Little Miss had she been adopted alone.

    Seeing her with Liam (William) lets me know that she will be fine with the kiddos.  She likes kids.   She loves to mother Liam.   She will be loved and will fit in just fine.  I have no concerns about that.

    We head home Friday and I can’t wait.  I miss my babies so much.  I am so thankful for technology.  Skype, Whatsap, and FaceTime have saved the day!

    I will warn anyone and everyone to be prepared to have your socks charmed off by the little guy.  He’s so easy to love, everyone comments on it.  They also can’t believe we’ve only had him with us for 2 weeks.

    My other warning is for adults with regard to Jessica.  Please give JJ her space.  Don’t try to pick her up, even though she’s little and cute.   Don’t get upset when she won’t talk to you or look you in the eye.  It’s not personal.  Right now she needs time to know that adults are ok.  She needs to feel safe and protected and we are going to insure that she has that.

    I’m happy we were called to adopt again.  These two precious souls are amazing and I am feeling overwhelmed by this gift that I don’t deserve.  Blessings beyond measure for being obedient to the call.  The sheer thought of this brings me to my knees.

     

     

     

     

     

     

  • Wish Me Luck

    Date: 2015.12.14 | Category: Adoption, Jasmine's Dream, Jessica, William

    One of the fun things you get to do, as a family that is waiting, is send care packages to your child. After a certain time in the process, your agency will allow you to do this. The agency will send you the address and you are allowed to send small toys, clothes, and other items. We have always enjoyed doing this, spending time shopping for just the right gifts to hopefully show we care.  We love trying to guess what their personality is like and find just the right gift.
     
    The problem is that none of our children, except Jasmine and Maisey, have received their gifts. I have no idea why they never received them. They may have been lost in the mail or customs or maybe someone took them. I don’t know but it is frustrating just the same. Jasmine was the only child who came with any of the stuff we gave her. We received Maisey’s disposable camera 2 1/2 years later from Show Hope when they found it at the orphanage in a drawer. We had no indication that Maisey had received anything else from us.
     
    Its frustrating because you send pictures and letters. You want them to know your family and be prepared, at least a little, when they meet you.  You take the time to pick out those special gifts and hope that they feel the love you are sending.
     
    Today Jasmine mentioned the letter than Dan had sent her.  She was talking about how much it meant to know that her daddy loved her and thought she was beautiful.  (Jasmine’s Letter)She said she reread that letter over and over again as she waited for us. Elyse said it must have been nice to get a letter like that. It was then that I realized Elyse never got our care package. We had sent her jewelry, hair accessories, clothes, toys, and tons of pictures and letters from everyone.
     
    I never even thought about it when we met her because Elyse did come with her locket and some of our family pictures. That locket and those pictures were hand delivered by another adoptive mama who had just adopted her daughter. I am thankful that there are other adoptive parents who are willing to ask for and carry items to the children who are still waiting. Thank you Krista for doing that for us. If you are adoptive parents who will travel soon, put the message out in the families of _____ orphanage Facebook groups.   I’m positive other parents will appreciate it too.
     
    Luckily, Dan had typed the letter and it was still saved on his computer. Today his little girl got to read how much her daddy loved her before he even met her. He told of falling in love with her sweet face when he saw her picture for the first time. He told her how much he loved hearing her sing and how he couldn’t wait to get her home to be his daughter forever. She cried reading these words. Her foster father didn’t treat her well. She thought she deserved this kind of treatment until she met Dan. She had no idea that she should be adored and loved just for who she is. She couldn’t grasp the unconditional love of a father when we adopted her. Elyse knows what that means now and this letter is just one more thing that proves she has always had worth and she will always be loved.
     
    I have heard that the orphanage that Jessica is in is hit or miss with packages.  Some people have said their child came with pictures and their items and others have said that their child said they never, ever received the package. It’s so frustrating because I would love for her to know we care about her.  I would love for her to know what we look like and be prepared for her new family.
    I wish I knew the rhyme or reason behind why some get them and some don’t.  I know there are orphanages who wait until right before the child is adopted because they have been burned before by a family backing out.  I can’t imagine what that would do to a child’s heart.  How horrible to wait for that forever family you heard you had, who never, ever showed up for you.   So I can understand the orphanage wanting to be careful.  I can understand somethings getting lost in the mail, but 6 out of 8 packages never making it are pretty bad odds.
    I think I may just take the chance that our children will get their packages.  I will pray that if they don’t get them, then the person who does get them feels all the love that went into the package and will have their lives changed by it.
    Wish us luck.  Maybe say a prayer or two that our newest family members actually do get their gifts so they know that they are loved and have a forever family that will be there soon.
  • Exciting News…

    Date: 2015.10.07 | Category: Adoption, Jessica

    If you are part of our Facebook group, then you have already heard the news.

    But if not here it is….

    IT’S A GIRL!!!!!

    Jessica

    We were so sure we were done.  So absolutely, positively sure we were done.  I honestly never wanted to do that 14 hour plane ride again.  I never wanted to do the two-three weeks away from home.  I was happy.  Our family was complete.

    The are many reasons I don’t like to travel.  I don’t like how jet lag feels. I am a bubbly, smile-at-everyone-kind of person and the busyness of big cities and people running you over, is more than I can take.  Plus, the truth is my heart just can’t take walking into the orphanages and seeing the faces.  The little hands grabbing at your leg saying, “Mama”.  The faces of children just waiting for a forever family.  Sometimes not knowing is easier on my heart.  Sometimes I think about leaving all the advocacy sites.  Sometimes I just want to shout that I’ve done my part.  I can’t take any more.  I have tears running down my face as I write this.

    Adoption is hard.  It’s hard healing little hearts.  If you think anything different than that, then you’ve obviously never been hurt in your life.  Because pain stays with you.  It never truly goes away.  You doubt.  You worry. It’s hard to trust.  You’re angry.  That is why they react.  They have triggers. They are in pain.  They have been alone and suffered in ways that we can never, ever possibly truly understand.

    So I wish I could save them all.  I wish I had a line of people waiting to see the pictures of the kids who wait all over the world.  I wish the waiting list wasn’t for the kids but for the families.  I wish there were so many people lining up to help that you weren’t even sure you would be lucky enough to be matched.

    I wish we could keep families intact.  I wish some choices never had to be made.  I wish no medical condition seemed too hard.  I wish no diagnosis kept a child from being loved.  I wish no label kept a child from finding a family.

    Even knowing everything I know, when my friend sent me the picture of this little girl.  I said, “No!”

    Even when my children started praying for her and pleading with us.  I said, “No!”

    I told them they could advocate.  That our family was already busy.  That we were done!

    But they pleaded.

    They asked, “How I could say no when they were so sure that God was saying that this was their sister.”

    Elyse was the most outspoken.  She was so sure this little girl was her sister.  She had her picture on her I-pad.  She had the littles praying for her all day long.  She was relentless and brutally hard on my heart.

    One day I asked her “Why this little girl?  When we’ve seen so many children’s faces, why this little girl?”

    Her answer?  “Because she’s me!”

    I was shaken and I cried.  Daddy and I still said, “No!  We are done!  I’m sorry.  We can advocate for her.  We will find her family.”

    Elyse batted her eyes.  Grace and Jasmine pleaded.  Daddy said, “You’re killin’ me Smalls!” about a 100 times a day.

    Then things started to happen.

    People messaged me saying that this little girl we were advocating for looked like an Ellsbury.

    There were signs and we questioned why we were done.

    We sat on this for a long time.

    Elyse says, “If she dies, I will never, ever be able to live with myself.”  Those words pierce my heart.  Could we help one more child?

    I really started to think.  What would one more child in a wheelchair feel like during the day.  I added on the time that it took to do Elyse’s cares.  I asked our older children what they thought and they were on board.  They voiced their concerns and they said they loved her little face.  My mother-in-law said she has watched God work wonders in our lives and she knew we would never enter into anything lightly.  If God is leading, she trusts that.  She says she knows we will listen to His call.

    I know what people will think.  Our family is huge.  We have so many special needs.  How in the world do they think they can do it?  I know the concerns.  I’ve voiced them myself.   We are so far out of our comfort zone.  We wonder will this be the tipping point?  Will this be too much?  Will she feel loved?  Do we have enough still to give?  Believe me.  I know the doubts and the worries.  I have said them a thousand times in my head.

    We decide we need to make a decision one way or the other.  Dan and I sit outside and talk.   We really, really talk about what this would mean for our family and can we handle it?  We watch the most unbelievable cloud formations and feel a peace over what we are trying to decide.

    clouds

    Dan says he needs to go for a drive.  He often does this when he needs quiet time to think.  I short while later I get the following text.

    Dan's text

    I gasp and scream.  Because I have been having my own thoughts.   I have been playing through all the maybes about what may happen.  Even though I know the reality of life is that our worst fears often don’t come to fruition and things we never even considered happening are what truly happen.  Plus, our family has been a part of some of the most amazing miracles.  Who am I to give up hope?

    She has special needs.  She has “S” curve scoliosis.  We’ve been through the back surgery with Jasmine.  We know what to expect.

    She has lower limb paralysis.  Just like Elyse.   We know what being in a wheelchair means for a child there as opposed to here in America.  We have three kids in wheelchairs.  We know the reality that the chair isn’t that big a deal.

    She has kidney issues.  RENAL FAILURE!  That is what her chart says.  How severe?  Will she lose her kidneys?  Will it be correctable?  We understand this issue because Gracie was there with her lupus.  Her kidneys were damaged but it turned around.  There is hope.  There are things that can be done.

    But the kicker for me was that my mom was on dialysis right before she died.  Her cardiac arrest damaged her kidneys and her liver.  I know what dialysis looks like.  I’ve talked with the people who set my mom up every day.  I understood the different ways to do it.  I know the time commitment.  I know what can be done.  It was like a gift from my mom.  I would have ran away from this before, but I understand it and like most everything else in life, once you understand it it isn’t nearly as frightening.

    Dan gets home and we celebrate.   I love her name. I instantly picture her as my daughter.  I can see us calling her JJ.  I imagine myself hugging her and bringing a smile to her face.  I imagine the overwhelming love she will feel from the girls who have fought so hard to bring her home.   We discuss our agency and the agency she is listed with (both are great agencies).  We decide that reusing our dossier may get her here more quickly.  We ask the other agency to transfer her file.  We are told there are families looking at her file but they will transfer if those families say no.  They understand a family needs to move quickly so as soon as they hear the other families say no they ask for confirmation that our social worker and our agency will approve us and they transfer the file.

    We make the decision not to tell the middles or the littles until we have PA just in case the answer is no.

    One day as I am scrolling through the advocacy site, I come across “Belinda’s” post.  Someone says that Belinda has a family.  Gracie reads it and instantly starts to cry.  Then, through sobs, she tells Elyse and Jasmine.  We have a big reveal party planned for when we receive PA.  I don’t want to ruin the surprise.  I tell the girls we should be happy that she has a family.  They bawl all night and wake up with broken hearts.  They say over and over again that they were so sure she was their sister.   It was horrible.  Dan and I decide we can’t let them feel this sad until we receive PA.  Cassie wants us to wait to tell them until she gets home from work so we decide to tell them that Dan will ask the agency who the family is.  Maybe we can watch her adoption unfold.

    Later that night when Cassie and Reece get home, we set them down to tell them the news of who the family is.  Dan says, “We have a picture of the family.  Would you like to see it?”  Jasmine and Grace understand almost immediately but Elyse won’t believe us.  Here is the video showing her unbelief.

    The ending of that video says it all.  We celebrate Jessica’s life and we love her.  The truth is we have enough love.  Your heart isn’t able to only love a certain amount of people.  Love multiplies. She will be adored and loved by so many people.  We will support her.  She will never be alone again.  She will have the love of a forever family.  We couldn’t be more excited!!!!

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