Archive for January, 2015
Jasmine and I have often talked about her sharing her story and she has decided that she wants to share her story. She has been working diligently on her blog and has now written quite a few posts. Flower That Blooms I love that she is sharing what her life was like. She is helping others see what being an orphan truly means. She hopes she will be able to help other orphans who may be afraid to come to America. She prays that more children will be adopted.
While she writes hoping she is helping others, she is healing. I see a glimpse of belief in her eyes that her life has meaning. She understands that all things may not be good but all things can work together for good. She may not understand the whys. The truth is none of us will on this side but she sees a purpose and wants to live her life for that purpose.
Last Tuesday Jasmine had a spinal fusion done on her back. This procedure will make it so she can sit up straight because the truth is as Jasmine’s muscles deteriorate, her spine can no longer be held up, which in turn affects her breathing and eating.
Here are here before and after x-rays.
During the surgery they took a couple muscle biopsies so we can get an accurate diagnosis for her. We know she has a neuromuscular disorder, presumably muscular dystrophy, but this will give us a correct diagnosis or at least that is the plan.
Jasmine’s life has not been easy. She says she can remember being clumsy at about the age of two, she was unable to walk very well by the time she was four, which made her father very angry, this was when she went to live with her grandmother. When she was almost eight years old, her grandmother, after deciding Jasmine was too heavy to move, took Jasmine to the orphanage and dropped her off, vowing to one day return. Her grandmother visited a couple times and then stopped showing up. Jasmine has been through more than any of us should ever have to go through and all of this with a body that slowly fails her.
This is what I want to talk about today, what a day in the life of Jasmine is like. I realized after messaging a few people during our stay here in the hospital, that not many really understand what Jasmine has or what a day in her life looks like.
For Jasmine every single thing is an effort. She is unable to sit up on her own. When she wakes up in the morning, she must lie there until someone comes to sit her up. Her body has been in one position for a long time and she is often in pain.
It takes two of us to move her. We have to help her to the toilet. She needs us to move her to the shower. I have to wash her hair because she can not lift her arms high enough to reach her hair. Put your elbows into your side, hold them tight there, add ten pound weights to your forearms, and then try to move your hands around. That is as much movement as she has. Something as simple as itching your ear requires her holding her arm up by the elbow with her other hand.
To move her legs, she tries hard to lift them by pulling on her pant leg. She is unable to move them very far. It can take her ten minutes to move her foot a mere inch. It frustrates her so.
She is unable to dress herself. She can not do something as simple as putting on a sock. I sometimes forget as I’m placing her arms in her sleeves and let go. Her arms falls heavily to her side.
We place her in her wheelchair where she insists on buckling her buckle herself. She can not reach down to pick up the buckles. You have to place them in her lap and then she takes minutes to try and put them together. Just lining up the two sides takes great effort and pushing them together takes great force that she just doesn’t have.
Then its time to brush her teeth. She leans forward and picks up her toothbrush. She has to lean forward, place one elbow on the armrest of her wheelchair, and hold up her other arm to get it high enough to brush her teeth.
She loves her power wheelchair and the freedom it gives her to move where she wants. She heads out of her bathroom and comes to the bedroom door. If this door is shut, she can not open it. Even if she could turn the knob, she does not have enough strength to pull the door towards her as she slowly moves her chair backwards. We have tried the pull down handles and even those take too much effort. She can easily be trapped inside her own room. If she does get stuck and tries to call for help, finding enough air in her lungs to make the sound necessary to be heard across the house is impossible.
She wants to get her school books herself. It will take her a good 15-30 minutes to pull the books out of the cubby, drop them one and a time onto the foot pedals on her wheelchair, all while she is leaning as far forward as she can, and then comes the hard part – getting the books on the table. She does it all in reverse. She slowly takes one book at a time from her foot pedals and struggles to get it on the table. It would be so easy for me to walk over and get her books. It would take mere seconds to throw them on the table. Every day I watch her struggle. I watch her refuse to give up her independence. She wants to do it for herself and I have to let her do what she can while she can.
Oh the things we take for granted. Bending over and picking up a pencil off the floor is so easy for us. For Jasmine it means taking her chair to go get her claw that she uses to pick up stuff off the floor, she leans forward and slowly lines it up. It takes both hands to squeeze the handle and pick up her pencil. She then sits the pencil on her foot pedal of her wheelchair. She leans as far forward as she can and picks it up, and then has to slowly pull herself back up. She can still get herself up if she has something to push against with her arms. If she falls backwards in her chair, she can not get back up. She just doesn’t have the strength to pull herself up.
She wants so badly to have chores and do what the other children are doing. It is hard to assign chores to someone that does not even have the strength to pull a plate out of a dishwasher. We have had to get creative with our chore list. Her main chore consists of picking the things up off the floor in the living room. She takes her claw and picks up the items she can reach on the floor. This is a never ending job with toddlers but she never complains.
The other chore Jasmine helps with is feeding Lainey. Lainey is unable to feed herself. She eats every three hours starting at 6 a.m. Jasmine gets as close as she can to the high chair, leans forward, and puts her elbows on the tray. Lainey has learned to lean forward and eat off the spoon. Jasmine loves little kids and is so good with Lainey. It’s very sweet to watch her care for Lainey. It must have been so hard for her to sit at the orphanage and not be able to care for the other children. Although, we do know she liked to read to the other children. She really is a great big sister and has such a compassionate heart.
Her fun for the day is going out into the backyard and going around the 900 foot cement path we put in. She drives around and around at the highest speed she can safely go. I asked her why she likes to just go in circles and she told me that for years she had to sit in the corner at the orphanage. She couldn’t move herself. She just sat there. She wasn’t allowed to go to school. She was told she was worthless and lazy. The freedom of going anywhere, even if it is just a circle of cement in our backyard, is a blessing. One of her favorite things to do is have us buckle in Evie with her on the chair. She loves to give Evie rides on her chair.
Jasmine spends all day in her wheelchair. She is no longer able to be moved to the couch because she falls over. There isn’t enough support in the cushions. At the end of the day, we do it in reverse. She brushes her teeth, we place her on the toilet, and we carry her to bed. She slowly lowers herself to the bed. I can not even watch this. It scares me so. She more or less lets herself drop to the side and slowly and painfully tries to squirm her way into a position where she can breath on her side. I ask her over and over again to just let me help her but she wants to continue to do what she can.
Can you imagine what that feels like as a person? You don’t have a choice without help you can’t go to the bathroom, you can’t get into bed, you can not get out of your wheelchair. If she tried to move out of her chair, she would fall on her face. She can sit unassisted if you get her positioned just perfectly. It’s like a baby who is just learning to sit. If you adjust them just right, they can hold themselves up, but one little bump knocks them over. But unlike a baby, Jasmine can not roll over and move herself.
I think about her alone in China. She was at their mercy and she has shared some horrible stories. Stories of being taken to the doctor who told them that she should be able to walk so they left her food just out of reach. They informed her that when she was hungry enough she would quit being lazy and get up and walk to her food. She went all day without food and finally tried to move forward. She fell out of her chair and they told her to get up. She says she slept on the floor. This went on for quite a while.
She has told us that when she would have an accident, because there was no one to take her to the bathroom, they would allow the little and big children to hit and kick her as punishment.
Whenever you think that it’s okay for these children to be in an orphanage, please think about what Jasmine has shared. Whenever you think that you just can’t adopt a special needs child because it would complicate your life too much, think about what your not adopting them means for their little lives. We have been told that Jasmine would have gone to an institution where it was survival of the fittest. I asked specifically about this because I didn’t want to not be telling the truth. Jasmine was two weeks away from this truth. The nannies told her what her future held. They let her know that she would be hit, there would be no one to feed her and that she would probably be left in a corner. And yet Jasmine is joyful.
I spend my days caring for others. I spend pretty much every waking moment doing something for someone else. I can do this without feeling sorry for myself. I can do this and still feel joyful every day because I have learned to take my eyes off myself. If I start thinking I could be getting a pedicure right now….I think about where Jasmine would be. If I start thinking a vacation would be nice, I picture how sad Lainey was and where she is now. If I dream about having a house that stays clean, I remember where Ben, Eli and Evie, who were considered inoperable and terminal in China, would be now. Jasmine’s life has brought me greater perspective.
Jasmine’s biggest fear heading into this surgery wasn’t the surgery itself. Jasmine’s biggest fear was that she would wake up and we wouldn’t be there. Jasmine’s biggest fear was that we would decide we no longer want her. Why does she have these fears? Because it has happened to her before. She has been through hospital stays by herself. She has been abandoned and left alone. She has been told that she is unworthy of love and a family.
I often wonder how such a sweet soul survived in an orphanage for so long. How did she go through years of hearing how worthless she was and keep her joy? How did she endure more than any child should have to and still keep her beautiful smile?
I am sharing these truths about Jasmine because I want you to understand just what she goes through every day and what it truly means for her to choose joy. Every day she chooses to be joyful. Every day she refuses to give up. Every day she does all that she can to the best of her abilities. Every single day without fail.
So if Jasmine has touched your life in any way, please remember the lessons her life has taught us:
1.) Don’t be afraid to do the hard things, sometimes they are the biggest blessings.
2.) You can choose to be joyful.
3.) Adoption isn’t about you.
4.) God has a plan for you no matter how much or how little you can do.
5.) If you are still alive, God’s plan is in place and He still has a use for you.’
Jasmine endured her hospital stay with great grace. She was polite and kind to others. Her life is a beautiful testimony! Please continue to keep her in your prayers as she has six weeks of lying back at a 60 degree angle in her wheelchair and six months of not being able to be moved with any ease.
After talking with Cassie today, I decided to take a moment and tell you all why we decided to tell our family’s story through our Facebook page and our blog. Years ago after we had adopted Hope, I refused to talk about her adoption story because I felt like people would think that I was bragging about saving this child.
You see Hope’s story is amazing. It all started when my husband, who was a fellow in neonatalogy, had a patient born with a heart defect. The preadoptive parents backed out when the doctors found the heart defect and the birth mother decided not to treat, which was one of the three options available for a child born with Hypoplastic Left Heart Syndrome (HLHS). Dan called me and told me he just couldn’t write the orders to discontinue support for this baby. We, as a family, decided to take her home and let her feel the love of family for as long as she lived. We had been through the death of a child and knew, with God’s help, we could do this. Not long after we had made that decision, the cardiac surgeon asked for a chance to save her life. We had been given a wonderful gift. We weren’t looking to adopt. We stepped out in fear because we felt that was what God was asking us to do. Hope is now 15 and doing very well.
But back to feeling uncomfortable telling Hope’s story. I would rarely tell anyone her story. I felt blessed that this adoption happened out of no where. I was so happy to have been given this opportunity. The way God worked out the details was unbelievable, but I still felt like people would think I was bragging. There were two conversations that we always heard if Hope’s story was mentioned. Either we heard that we were going to ruin our family and this was a stupid thing to do or we heard that we were saints.
One day, years after Hope was born, I was sitting on a bench at the Iowa State Fair. The stranger next to me started some small talk. She asked if I had any children and I said, “Yes, three boys and two girls.” She asked me their names. As soon as I said Hope’s name she smiled. She told me that she loved the name Hope. She had heard the sweetest story of a little girl with a heart defect and her church had been praying for this little girl because she had recently had surgery.
A perfect stranger had just told me Hope’s story. I took that as a sign from God that Hope’s story was being told whether I was telling it or not. I decided then and there that I had the choice to turn all the praise back to God or to keep quiet and let others do the praising.
A Facebook friend recently posted this quote. “When God answers a prayer, no matter how big or how small, we need to share it. It’s a stewardship issue. If we don’t turn the answer to prayer into praise, it may very well turn into pride. Giving testimony is the way we give God all the glory.” ~Mark Batterson, Draw the Circle
I want others to see the miracles that God has done in our lives. I have felt Him call and stepped out in fear and watched Him provide over and over again. This is why I tell our story. So others see the glory of God and understand that He calls us to care for the least of these. Adoption is just one of the ways this is possible. What is your story? What is God asking you to do? Don’t be afraid. It just might be the best thing that every happened to you.
It all started with tears over the fact that she didn’t want to have a tea party with Elyse and Gracie. Somehow I knew it wasn’t about the tea party. Jasmine is usually easy going. It was unusual for her to balk about something so trivial. I asked her if Elyse had said anything to upset her and she screamed, “This is boring. I don’t want to do it.”
I let her know she didn’t have to play with the other girls. I let her know that she could just sit in the room and watch them then but it would be more fun for her to participate. She still didn’t budge on her position and I left them alone in their bedroom.
About five minutes later Gracie came out saying Jasmine was sobbing. I tried to get Jasmine to talk. Cassie tried. Gracie tried. None of us had any luck. I told her I knew that there was something else going on. I asked her to e-mail me when she felt ready to talk. She told me there was nothing wrong and I gave her some more time to calm down.
The sobbing continued. We continued to try and talk to her. Jasmine yelled, “There is nothing wrong. I am NOT sad! I am NOT mad!” as the tears continued to roll down her face.
This lasted three hours.
Three hours folks and she kept insisting it was because she didn’t want to have a boring tea party.
We’ve had one other huge battle like this one and that battle was over her saying she was stupid. This was admittedly the dumbest fight ever in the history of fights. She refused to back down about saying she was stupid. I told her she knows three languages. She is doing amazing in school. She is one very bright, insightful girl and I would not let her call herself stupid. The fight continued. She yelled. She threw her pencil. She cried and cried and cried all over the fact that I refused to let her call herself stupid.
I informed her that she could either say, “I am NOT stupid or I was going to make her write it 50 times.” She still refused. I got out the paper and the pencil. She wrote her sentences but she refused to write the NOT. This part of the disagreement went on for a couple hours. I tried to let her calm down. I had Cassie talk to her. I had Dan talk to her. I had Hope talk to her. She refused to say, “I am not stupid.” and the tears continued to fall.
See we’ve been here before. I knew the fight wasn’t about the tea party just as much as the other fight wasn’t about her admitting she isn’t stupid. It was about fear. It was about having so many emotions over so many confusing thoughts that the simplest thing set her off. It was safe to be mad about a tea party. It was not safe to admit your fears.
I told her that she had to stop and calm down. I wasn’t going to argue with her. She needed a shower so I gave her time alone in the shower so she could think. She refused to talk. I had already told her she had two choices.
1.) To let me know what was really wrong.
2.) To go to bed.
She chose to go to bed. I couldn’t believe it. I gave her the options and now I had to follow through. It was 6:30 p.m. and she chose to go to bed. I gave her ten chances to change her mind. I gave her her I-pad in case she changed her mind. I told her she could let me know just a little bit at anytime and we would talk but that she wasn’t allowed to not tell me the truth. She couldn’t keep saying “I’m not mad. I’m not sad. She could ask to talk about it later but she could not keep lying to me about there being nothing wrong.”
Three hours later I get this e-mail.
“Are you sad adoption me?”
Am I sad that I adopted her? Oh my heart.
“I do wrong. Do you think I’m stupid?”
“If one day you do not want me, I really do not want lose the family.”
“Because I know what will become of my foture.”
And then she asked me to come to her room to talk.
It wasn’t about the tea party. It was about Elyse mentioning that the nannies told her that she could come to America and be healed. The nannies had told Jasmine the same thing. We were about six months in when Jasmine had enough English under her belt to ask us when she would get the surgery that would let her walk. We had the horrible task of letting her know that there was nothing that could be done. You can’t fix muscular dystrophy. We had to break her heart and now we were going to have to break Elyse’s. I told Jasmine not to say anything to Elyse because we haven’t seen a doctor yet. Jasmine doesn’t need to be the bearer of bad news that could wait for another day.
But all of her discussions with Elyse brought up the fears that she had before.
Jasmine told me that she was worried that she would get too heavy and I would take her back to the orphanage.
Because it has happened to her before.
Jasmine let me know that she was afraid about having her surgery on the 13th because she didn’t want to wake up in the hospital alone.
Because it has happened to her before.
Jasmine was worried that I would decide that she was no longer worth caring for.
Because it has happened before.
It wasn’t about a tea party. It was about her wanting a family. It was about her wanting to walk. It was about her wishing she could dream about one day growing up, falling in love, and having a family of her own.
I’m sharing this story today because I want other parents who have adopted or are choosing to adopt an older child to remember not to take it personally and to remember the trivial fights usually are about something much more. It’s not about wanting to eat late at night. It’s about them testing you to see if you will feed them and love them. It’s not so much about control as it is about fear. Fear that you don’t love them enough. Fear that they won’t get food. Fear that this whole family thing isn’t going to work out.
I can understand this. For years when Dan and I met, I would test him. I would push him. I would bait him. I would argue with him. Why? Because I didn’t believe someone could truly love me. My dad and my mom divorced when I was 10 and then shortly after that I was sexually abused, for a whole summer, by an older trusted friend. It played with my head and my self worth. It made me believe that men would just hurt and that I had no worth. This took place over about six months. Now imagine if your whole life had been one of not feeling loved or worthy. What if they made you believe that you are so bad that if you ever let anyone know the real you, they would return you to the orphanage? How much would you test? How much time would you need to heal?
Dan finally made me see that I could trust him and live each day happy or I could spend my whole life assuming he would leave and be miserable. I had to make the choice. These kids are in the same boat. They have to make that choice but the first couple of years are just trying to figure it out. They don’t have the language or the maturity to make that choice. It’s all about survival. If they learned to survive with manipulation, then they will manipulate. If they learned to survive by withdrawing, then they will withdraw. It takes time to let go of the fear and the anger.
So it’s up to us, the supposed grownups, to remember it has nothing to do with us. It has to do with fear and we have to remember who the author of fear is. It isn’t God. God is all about hope and redemption. Satan whispers and people doubt. Please remember that the next time you are in the heat of the moment. Take a step back. It’s not about the tea party or them loving you. It’s about fear that they will one day lose this thing that they can’t even admit that they want.
Zhengzhou – Stage Two is complete. (This blog post is late. I couldn’t get my phone to post from China on WordPress. We are considering this post – better late than never.)
The excitement is always overflowing when you arrive in Zhengzhou. Everyone gets settled, meets the other families, and there is a buzz in the air because they know they will be seeing their child in a day or two. Most of the time, everyone rides together to the Registration Office to receive their child. The child may be there when you arrive or they slowly show up as the morning goes on. These days always bring tears to my eyes. I can not watch a video of someone’s Gotcha Day/Family Day without crying. Once you know what it means for these children your heart will be forever moved.
Many agencies have special affiliations with certain orphanages. CCAI does quite a few adoptions out of Henan Province. Zhengzhou is where you end up staying if you are adopting from this province.
We stayed at the Marriett Hotel which had been recently renovated. I know there are many, many families who stay there during their week in Zhengzhou. I wish they would have set aside a couple of rooms that were toddler proof. The glass closet doors, glass bathroom door, and automated everything from curtains to lights, is too much for a small child to take.
The lobby was decorated very beautifully.
A couple nights they even had carolers.
Wal-Mart is a few blocks away. You spend your time walking on the sidewalk avoiding motorized scooters, bicycles, and small cars. Yes, travel in Zhengzhou is exciting to say the least. There is a lot of road renovations going on making it a little more interesting to travel in this particular stretch of town.
One night we even saw many biking Santas
Stephanie and I were especially happy that they put a Subway sandwich shop down by Wal-Mart. Many of the breakfast menus have American cuisine. Lunch can be a whole different story though. I am not adventurous and I do not like my fish looking at me when I eat them.
Max, however, was very happy with KFC, double deserts, and anything else they put in front of him. 🙂
I chose to visit the orphanage this time. Max, Lainey and Maisey were all adopted out of this orphanage and I had never had a chance to visit. When we arrived on the street leading to the orphanage Max’s demeanor changed. When we were waiting at the gate, the tears started to fall. When we arrived at the front doors, he was pretty much hysterical. I had never had a child respond this way. Jasmine was excited to show us off. Ben was 3 1/2 and he just held on tight to Dan, but really didn’t make a sound. Max took it the hardest. On one hand, I was upset that we had upset him that much but on the other hand, it was good to see him respond with such a strong emotion. He hadn’t really showed that much emotion up to that point. It showed he knew what was going on and understood to at least some degree that he was safe with us.
The orphanage looked like a nice place. There were many rooms set up that looked like any other preschool you would see in the U.S. These buildings can be clean, new, with all the newest gadgets, but they still aren’t a mama or a baba.
While in China, you receive the child and have 24 hours to change you mind. There was not going to be any changing our mind and on the second day our adoption was complete. Max was officially our son!
We spent our week bonding and getting to know each other. He loves Zach and Steph. It was sweet watching them bond. Max liked to curl up on the bed between them all the time. He likes to snuggle and pat your head. His little kisses on your cheek are the sweetest thing ever. He is non-verbal but that doesn’t stop him from communicating. He is already signing quite a few words. We knew he was getting it when Steph signed “shoes on” from the other room and he went and found his shoes and put them on.
At the end of the week, everyone’s emotions change. They have their child. They are bonding. They are ready to move to the final stop, Guangzhou.
That is where I am. I just want to go home and hug my husband. I miss him so. I want to hold my babies and get on with being a family.
- Chinese Children Adoption International
- Hats for Gracie
- Love Without Boundaries
- New Hope Foundation China
- Show Hope
- China 2013
- China 2014
- China 2016
- Congenital Heart Defect
- Evangeline Faith
- Family Life
- Food for Thought Friday
- Jasmine (Shuang Shuang)
- Jasmine's Dream
- Lainey Rae
- Love Without Boundaries
- Making a difference
- Muscular Dystrophy
- Orphan Care
- Thoughts to ponder