One Month our Daughter

    It was a short month ago in Shanghai, April 19th, when we had our official adoption of Willow Joy Xian. To be truthful, we were a bundle of nerves. We had met our daughter the day before and had spent enough time with her that we were very aware that we were signing papers for a child that we were woefully unprepared for. We had researched and prepared for a child with O.I.; a child that everyone said was sweet, but what we didn't prepare for was a child with severe ticks. We were ready for grief and anxiousness, but not for the animal instincts of spitting, slapping and pinching. Everything in the natural told us to Run, say "No," and get out of there; yet, God had started us on this journey and we knew he was aware of the past, present and future of both this child and Dan and I. As the turmoil and panic swirled around us, I kept telling myself that in a month, things would be much different.  A month goes so fast; a blink of the eye, and problems are changed, opportunities are discovered and you can be over that hill that looked so big when you began.

    Now we are at that month mark and so much has changed. After 2 very stressful weeks in China we were overjoyed to be home with our kids. Our days have changed drastically. I have taken Willow to 2 hospitals: one for an emergency and one for a clinic and treatment. I now wake up @ 6:30am to a child that needs to be carried downstairs, toileted with assistance and wants to dress immediately. I struggle with activities for her because she has limited Playing skills. We struggle with the language but she is learning rapidly and added 2 phrases today: "which one" and "what are you doing?"  She is a ball of energy and still very stubborn but she has learned quickly that mom and dad are boss and that we don't bargain for things.  She has broken a bone and within 48 hours was out of her bandage and wanting to go. She gives hugs, kisses, says "I love you," and now will nod yes when we say it to her as acceptance of the fact.

   Things are not perfect: my back is sore from lifting and I miss my morning devotion time. I really don't have a spare moment unless I want to stay up late. I am struggling to know what I should let her do and what I should curtail. We are living day to day, yet there is a fullness to our days. Willow has a great interest in Jesus: she wants to hear the stories and wants me to sing the song. Tonight I had the wonderful privilege of hearing her little voice sing along with me, " Yes, Jesus Love Me.... yes, Jesus loves me..." There is nothing sweeter than that.  Out of great suffering, comes great blessings. 

And so It Begins....

Well, we knew it would likely happen but still nothing can prepare you for "that moment" when your child cries because of a break in her bone. She was upstairs building with legos when my son came down and said she was crying. I at first thought he meant she was crying because they wouldn't share but after taking only a few steps, I realized her crying meant pain. We brought her down to couch and I quickly tried to remember what I needed to know.  My mind was mostly a blank but I did manage to send my son for his dad and try to immobilize. I pulled out a sling completely forgetting I have ace bandages to wrap. I got an ice bag and began to try to locate phone # of other OI moms for advice. Luckily a fb mom suggested I wrap (duh) and my clear thinking husband suggested we call a neighbor friend who is a chiropractor. He came right over, agreed it was a fracture, and showed me best way to wrap.  I gave her Motrin and she began to feel more comfortable.  I regretted keeping her in her dress after church since there was no way I was going to attempt to remove it and dresses are more difficult for getting her on/off toilet.We made it through the night with another dose of pain meds and today she says it hurts just a little. She has progressed to pulling her arm out of wrap  and not wanting me to fix it. She is using it to assist her other hand when she needs to.

 

 I realized that you can't ever be prepared without the hands on that only experience can give you. This will be our new normal and I hope it won't shake me up quite so much next time. My God is more than sufficient to meet all our needs for now and in the future.

Day 2 clinic

     Thursdays clinic started at 7:45am. We were assigned a room and each discipline came into the room to discuss Willow's care needs. We talked with a social worker, a dietician, a dentist, PT and OT but of course what I was most interested in was what the dr's thought.
    According to her X-rays, Willow has had @ 100 breaks in her short life. She had a very recent break which is not well healed and yet she goes 100mph and complains of no pain. She has had @ 7 infusions of a bio phosphate which helped in making the decision of her having an infusion before we left Omaha. It added 3 more hours to our day but will keep us from having to worry about this for six months. The infusions as I understand them help her bones retain cells while her body makes new ones. (OI is partially a problem of your bones flushing away cells faster than it can replace them.) Her bone density is low but not terrible. The doctor allowed us to do a 1 hour treatment of a newer drug rather than the 2 day infusion which needs to be repeated more frequently. Willow remembered having this done in China and had no issues with the IV, needles, blood: everything I have issues with.
     We talked with the surgeon about options for surgery. Willow was interested in the X-rays and told the doctor through a translator that she had surgery in Shanghai and it was no good. She asked the doctor many questions through the translator. Can you straighten my legs? Will I be able to walk? Will it hurt? He was impressed with her choice of questions and how much she seemed to understand.  She has had a lot of medical in her short life. Oddly, she gets very independent when it comes to hospitals and pushes me away. I hope she can soon trust me to look out for her medical interests. The doctor said she will need extensive surgery and gave us some options for how to proceed. We are discussing and hope to have a plan for later this summer after she has gotten more acclimated to our home. He stressed that she is a happy child and could go through life as she is and still be happy. The goal of surgery is to prevent/reduce breaks in the future. (I know how bad she wants to walk. She told us she used to be able to walk.)
     Our translator was wonderful. She was amazed that we adopted her knowing she had OI and thought it was a wonderful thing. Her and Willow chatted nonstop about the orphanage and her new family which was something Willow needed. We were asked many times why we would adopt a child with a severe handicap; the answer doesn't change. We love her because God first loved us.

 

OI Clinic Day 1

Day 1 started at 6:30am. After breakfast we went to hospital to begin our appointments. Willow started with a dexa scan which measures bone density. She then had multiple X-rays of her body and I am anxious to see results of both of these. After a short break, she has an audio screening: perfect hearing. Last was a pulmonary test and for someone who knows how to scream, she had trouble blowing out the candles.

   I was able to meet other OI families tonight and Willow actually played today with a little girl!  There was a play set in the back of Rainbow House and Willow wanted to go down the slide. I was aprehansive however I am trying to let her set the bar for what she can and can't do. She went down @ 10 times before I was done with the lifting. I am glad she was able to slide and pray that God continues to keep her bones whole and strong.
   Tomorrow will be the big day. Morning appointments with Dr, surgeon, PT and OT. Please pray that there is a plan for her that we can all agree on and will help her reach her full potential.

Omaha

Yesterday (tues) I drove to Omaha NE with Willow and Evan for medical appointments today and tomorrow at their childrens hospital OI clinic. It was a twelve hour drive which included two 30 minute stops. Both kids did great especially with the last couple hours of Iowa farms. I am thankful that I didn't get tired till the end (8pm)
   We are staying at a place called Rainbow House which is a hostel for families of children getting treatment at the children's hospital. It is free and includes basic food and drink. I am very thankful for this blessing. Today we have the first of our medical tests done. They include X-rays of all bones, a scan to determine Willows bone density, an audiologist appt. and a pulmonary exam.

   I am praying that we get all the information we need to make the best decisions of her medical needs and a plan for surgeries. We have come a long way and that may seem crazy but in all my research I discovered that this is the place where the experts are and once we have a plan than we hope to use providers closer to home for the basic care needs with surgery here.

play room at rainbow house

With much trembling

   This post is for those considering adoption but think you aren't able. Maybe you are too old, too tired, have problem children, have way too much going on and don't have a moment for yourself.  Has God given you a heart for adoption? Has he showed you a path to a child who needs a family? You can bet that if God is in it there will be conflict. There will be turmoil. There will be heartache, not enough energy or time. But what are these to knowing that you are serving your Lord and King?       If Jesus stood before you and said, "My son or daughter, I have a mission for you. It will require great sacrifice on your part and even your family will have battles. however, I am sending you to bring a child out of darkness. I want you to loosen the chains that is holding them. They may fight you but they will know love and acceptance because of you. I want you to tell them about me and about my Father God who loves them beyond measure." Would you do it?
  1 Cor. 2:2-3 "For I resolved to know nothing while I was with you except Jesus Christ and him crucified. I came to you in weakness and fear, and with much trembling."
  Yes the apostle Paul trembled with fear when he was doing what God called him to do and we also will not always be strong and courageous. Sometimes we will be scared beyond belief. This doesn't mean we aren't in Gods will; it may just mean that we are in a battle for a soul.
   Day 3 of our adoption my husband and I felt like we were going to have a nervous breakdown. Our newly adopted daughter not only had the physical scars we knew about but also emotional scars deeper than we had imagined. What got us through? Turning to the promises of God, knowing he had called us to something way over our heads. Don't give up on the vision God has given you. He knows the end result and we have to trust he will bring all things into the perfection He has for them.
   May God bless you on your journey.

Parenting a Child with OI

We are now the parents of a child with Osteogenesis Imperfecta (brittle bones) and I have been surprised, amazed, and relieved to know that her label is unknown to her. That first afternoon when she was placed with us was scary. I didn't let our guide leave our room until I had taken Willow to the bathroom without anything bad happening. Her limbs are very bent and she has scars running down her thighs. She also has a 45 degree bend in both shins. I had seen pics from 6 months earlier and she then had only one bent shin so this was a shock.
  I was surprised at how easily she pulled her pants up and down over her legs. She let me help her with the top but was very protective of her lower limbs.  I tried to pick her up the way I was taught but she wanted me to scoop her up like a baby. I had to trust her to know what was best. I let her lead on how she wanted to move, be lifted, bathed and dressed.
   I knew that I would be lifting and transferring her and that she weighed around 50lbs. After multiple times to bathroom and up and down in chair I began to pray that my back would hold out. I am getting in my share of squats everyday and looking forward to advice on how best to provide for her and me regarding this.
  Though I needed to learn about her needs I also needed her to see me as the mom. She was very resistant to this and tried to manipulate on all fronts. Though I was new in the field of  "mom to a child with a medical need," I was not new to being "Mom." I have had many strong willed children and I knew I couldn't let her medical need dictate our relationship. This meant I couldn't treat her behavior as if she was fragile. When we told her no and she pinched or bit, I had to gently but firmly remove her hand. When I put her on the bed to keep her from getting into something dangerous or destructive (think 2 years old) I couldn't let her know how nervous I was when she'd scoot to the end of the bed as if to jump. I was ready to leap in order to save her but stood my ground until she would recognize the danger herself and back away. Thank God. This was an important battle; if she had won, we would have been held hostage to her special need.
   Since returning home she has amazed me with what she wants to do. She has asked to go to the playground, kayaking and swimming in our pond. She has tried to go down our stairs but luckily realized it was a bit too much. She loves to be outside and who can blame her since she probably never has been. She toilets herself, dresses herself, washes herself and brushes her teeth.
  In our first 48 hours home, she became ill and needed to be hospitalized. This was very scary but I believe it had some positive outcomes. She had to depend on me and I learned how much she's already been through (multiple scars on her hand from IVs). I learned that even though I just met her a few weeks ago, I am still the person who knows her best and has her best interest in mind.
    Her siblings have surprised me by not focusing on her abnormal limbs but rather on forming a relationship. They are learning right along with me on what they can and can't do. Life will be crazy and difficult for a while. It will never be safe or normal again but I know that I will see joy and love and for this I am thankful.

The Beautiful Mess

This post is not a feel good post and I probably won't purposely share except on those sites where other parents have felt called to adopt and know the risks and struggles of choosing to go where others don't and the possibility that there won't be a "happily ever after" this side of heaven. We chose to add another child to our full family, we chose to adopt an older child, we chose to say yes to a child with a severe handicap and we chose to go to the other side of the world. Because of this most people feel we have no reason to complain (it was our decision) and no reason to expect that others will help with anything other than prayers. (Sorry if I offended but that's the way it is) I write this post simply because most adoption posts show the ups without the downs. We all want to encourage adoption and so are careful not to show the cracks. I am an advocate for adoption and have always been careful to keep it positive but now I realize that it isn't right to show potential adoptive parents only the good. We love all our kids but as with all things, there is good and bad and if you are on the journey of adoption, it is harder to parent or take the leap if you feel alone. So this is one mom's account of the journey which was a little way from the ideal.

Both my husband and I felt unprepared before we left due to the special need our daughter has (brittle bones.) We didn't know what condition our daughter would be in when we met her, or if she would need medical care while we were in country. How would we toilet, bathe and transfer her with all the traveling? We took a big breath and got on that airplane.

Once we met our daughter, the stress and our doubts about our ability to parent this child increased. We never doubted our ability to love her; that was a given and immediate, however, once back at the hotel we began to notice that this "sweet girl" as noted on all her paperwork, had more issues than her medical need. She displayed multiple twitches and facial ticks. We reasoned that they could be due to the fact that she was in a room with severely developmentally disabled children and was mirroring what she saw. But they were so frequent that we could not rule out a neurological problem. We looked for signs the 2nd day that they weren't as severe as the previous day but might have been looking too hard. Along with this was the surprise we had that this new daughter had not been taught anything: not discipline, not manners, not self-control. The first week I was peed on, spit on, slapped, pinched and bit. If you've ever seen the movie "Helen Keller" you have an idea of what I mean.

Being "In country" and having a guide does not mean that you have an allie. We tried to share with our guide some of our doubts looking for reassurance, we even contacted our agency's facilitator who asked me if everything was all right? to which I replied that we were nervous. At this point we were on day 2 and in the middle of our adoption process at the governmental office. What could we do but forge ahead? Our guide either didn't understand our questions or was trying to avoid them (what was she to do?) At one point I told her we had to walk outside and couldn't stay in the hotel room. She asked why and I tried to explain about the twitching and the slapping but there was no response or advice. We hoped that when we visited the orphanage the next day we would understand more of where she came from and an explanation of some of her behaviors and this would help us with empathy and maybe an epiphany of some kind.

Our daughter seemed excited to go back to the orphanage even though the day was rainy and dreary. She led the way through the maze of halls and into the elevator. I remember being shocked at how run down the orphanage looked since it was built in 2000 and had been "state of the art." The floor tiles were chipped and there were cracks in the walls. Nothing could have prepared me for the room she led us to, the one she had called home for more than 2 years. There were about 15 children; some laying flat in wheelchairs that reclined, some in pens (sorry, I can't call them play pens) and a couple sitting or standing waiting to be fed. There was a lead nanny who spoke to us while 2 helpers shoveled food into the mouths of these very disabled children. All these children deserve families and were being cared for but all I could think of was Why did you place our daughter here??? I politely asked the question and was told she wouldn't have been safe from breaks if she had been in with more healthy children. My husband and I now understood her facial ticks and mannerisms to be learned behaviors but we both felt sick to our stomachs. There was no smiles or communications of familiarity between our daughter and any of the Ayis; she didn't want to share their lunch, only show us her crib and look for her friend.

We walked down a few more halls to a couple classrooms where some type of activity was being given to some of the more mildly disabled kids were. Her friend, a 15 year old boy came out to have a picture with her. Whether he was shy or uncomfortable I don't know but he only said hello and looked off into the distance as we took thier picture. There was no conversation between them though apparently they had been close enough for him to cry upon her leaving the home. We hope he was as a big brother to her but we will probably never know.

After another day of sightseeing, we were off to the airport to navigate cancelled flights, bus rides and pushy crowds despite our agency saying that we wouldn't have a repeat of our experience of 5 years ago (it was an exact replica except for the fact that this time I was carrying a handicapped child and praying I wouldn't drop her.) Once in a new city we hoped things would look up and we would have the chance to be with other adoptive families who could share our struggle. Our guides were again blasé about anything negative we tried to communicate. We did see other families at our medical appointment and the U.S. consulate with which we communicated our basic and common stories: where we were from, age of child, name of agency and that it was going o.k. But with the exception of one dad who had a crying boy attached to his leg and looked like he had been in a cat fight, the other families seemed to be bonding well.

Each day we saw slight improvements; there was a request for a hug or kiss or she would hold my hand as we wheeled her down the many streets.These would then be followed by a pinch, screach or spit when we told her no to something. We were thankful that medically she was doing well and we didn't have to use the splints or diapers we had brought. We were thankful that she was spunky and didn't let her bent legs stop her from scooting all around the hotel room. These traits would help her with all she was going to have to face in the coming weeks and months. Yet we mourned the loss of cuddles and the inability of her accepting us as authority figures. Even at one point shaking her head no to our "love you."

Now we are home and beginning to settle in. She was very excited to see her siblings whom she had been skyping with for 2 weeks. She took in the new home, dogs and all with a brave can-do attitude. She has still told me no and slapped me and we probably have a long road ahead of us both physically and emotionally. I guess my reason for posting is because our first international adoption was so positive and though we knew this would be different we were not prepared for what we saw as rejection. I expect that a year from now I will have more positives than negatives to share; however, I hope I have the courage to tell prospective parents the whole truth: adoption involves both beauty and sacrifice.