We woke early on Sunday morning to leave for the airport. The first words I heard were from Maisey, who was adopted with Benjamin, “Bring him home mama. Ok?” We arrived in Boston on Sunday night. Benjamin had his pre-op appointment bright and early Monday morning. He was listed as the first case for surgery on Tuesday. He was extubated Tuesday night. We spent one day in the PICU. He could have gone home on Friday, but they wanted to do one more chest x-ray Saturday morning just to be safe. This surgery was miraculous but not because it went so well or so quickly BUT merely because it happened at all.
How completely humbling it is to watch as your child receives a miracle.
Mir-a-cle (noun) – a highly improbable or extraordinary event, development, or accomplishment that brings very welcome consequences.
We heard that word more than a few times while in Boston this trip. “Can you believe this happened?” “We are trying to figure out why Ben responded so well.” “Isn’t this amazing!” “We can’t believe it!”
It’s been an unbelievable journey with him. We went from having no hope to hope for a complete repair. Why? Why Ben? Why our family? We are no more special or more deserving than the next family. We have a strong faith BUT so do most of the people I have met on this same journey. Things happen, good and bad, and it makes no sense to me. I can’t wrap my head around it. I can’t see the big picture.
Have you ever stopped and wondered why you get to live in America? Why you wake up free? Why you have a warm house to live in? Why you can go to any store and buy your groceries? Why do you have clean, running water? Why don’t you live in a mud hut? Why don’t you have to walk miles to find your water? Why do you have health care? We are no more deserving than the rest of the world. Our faith isn’t necessarily stronger. ALL of us are sinners deserving of nothing so why do some have and some do not?
During the past few years I have watched four families in our China Heart Adoption group have kiddos that received heart transplants. The road wasn’t easy. It was paved with detours and long waits. It had more than it’s share of heartache and close calls, and yet there were blessings beyond measure as each of these kiddos received a new chance at life. Their lives and their stories will stay with me forever. (Lily) (Rachel) Joshua and (Rini)
I’ve seen some of the sweetest children you could ever hope to meet, battle alongside their families who have great faith, not make it out of the hospital. (Timothy) (Eisley) (Daniel H.) (Teresa) (Zoe) (Rosie) (Daniel)
I’ve seen others who have been hospitalized for months and months and months and have major complications.
And I’ve seen some fly through it just like Ben.
Their faces have stayed with me. Their stories of faith and fight have moved me.
There are 277 people on our heart group for families adopting from China. We are all walking this journey of adoption and faith and congenital heart defects. We all have a story. All of us. Some of us are more public with our blogs and Facebook pages, but everyone’s story gets told to those around them, their family, their churches, their friends, etc. Everyone of these heart babies have a story. Every one of these children have touched others lives.
Every year during February a dear heart mama, Jaime, puts together the 28 Days of Hearts Blog where these families share those stories. These are stories that encourage others. When we traveled this past February another mama said she knew me and figured out it was through this heart blog.
We will never know how many people are touched. We can not know what the ripple effect of their lives is. Their lives, no matter how long, have great worth and are worth every minute that we fight for them!
I have a hard time with sayings such as “there but for the grace of God go I” but at the same time I’ve name a daughter, Grace, because I truly feel she was saved by God’s grace.
Or “God must have plans for him” because whether a child survives or not God had plans for this child. And I know God does not mean to harm us, but doesn’t a child’s death mean we are harmed? and yet Jeremiah 29:11 is still one of my favorite verses. For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.
Or “God heard all our prayers” because the reality is God hears all prayers. Sometimes we don’t get the answer we are hoping for, but God hears the prayers. We have been on both sides of this. We’ve prayed fervently and had a son die and we’ve prayed fervently and had children receive miraculous recoveries. So how do we wrap our head around verses like these “And I will do whatever you ask in my name, so that the Father may be glorified in the Son.” John 14:13
Believe me there’s not a lot worse in the world than picking out a little white casket for your child or wondering how in the world you are going to afford to bury your son. We prayed hard for Kyle. Others prayed hard for Kyle. I don’t know why our prayers weren’t answered like we wanted. I don’t know why he had to die. I don’t have to understand the plan to TRUST the plan or to know for a fact that the plan is good. “My thoughts are nothing like your thoughts,” says the LORD. “And my ways are far beyond anything you could imagine. Isaiah 55:8 NLV
I understand there is so much I can’t possibly comprehend. God’s ways are not my ways, but I do know these little lives, whether they live a long life or a short life, matter. People are moved by these stories whether happy or sad. They are moved by the struggles and the pain. Many, many people come together and pray for these hurting families. Lives are changed. More children are adopted. More people realize they too can do this. Families are supported. People are encouraged.
None of us want to go through the bad but the truth is that is where we turn our lives over. It’s in the messy parts of life where we can’t figure out how to go on that we draw closer to God. We are no longer too busy to take the time to pray. Our hope lies in him. We can’t go on without Him. These little lives bring us closer to God. They make our walk stronger. They make our faith more real. They take us so far out of our comfort zone that we can barely breathe. We turn it over, our pain and our worry. We let God hold it. We truly understand for the first time what “cast our cares on Him” really means. We find peace where it shouldn’t be. We find strength from Him. We learn to fight for what’s important. We learn how to let go of the small things.
And when the unthinkable happens, we find peace in the hope that eternity brings. We hold tight to the promises that this is not the end. We look forward with new understanding of what the joy of reaching heaven’s gates means.
These little lives matter. They are worth the fight. Although we can look at Ben’s recovery as a miracle. The reality is that all their lives are miraculous. They have survived the unthinkable. They have lived with oxygen saturations that leave them blue with clubbed fingers and toes and still they are happy.
They still find reasons to smile even when they can not run and play like the other children. They still love BIG even though their little hearts are broken. We learn so much from these little lives. Each and every one of their lives is a miracle.
We are lucky enough to have four miracle heart babies in our family. Four times we have stepped out in obedience. Four times we have been scared beyond belief. Eight times we have shown up for open heart surgery. People ask, “Is this a big surgery?” Just let me say for the record that any time they open your child’s chest, put them on bypass, and mess with their heart, it’s a BIG surgery. It doesn’t matter if it last 6 hours or 14 hours. You never know what is going to happen. Granted some surgeries have much greater success rates, but it is still frightening. It is still going into the unknown.
I want you to understand what it is like to live in my house. I wake up in the morning and stand at the doorway, while my miracles walk towards me. I know at any moment it could end, as it could for anyone, and I appreciate every breathe they get to take.
So although I am singing praises from the mountain tops about Benjamin’s miracle, I want you to understand that every life is a miracle. Everyone of these heart children’s lives were a miracle. There are many more miracles waiting for their forever families. If God is talking to you, and you are scared beyond belief, we’ve all been there, please reach out. Any of us would love to encourage you on your journey too.
“God didn’t promise days without pain, laughter without sorrow, or sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way.” – unknown
It’s been a while since we’ve done a Food For Thought Friday. Today seems a good day to start again.
Jasmine came to us with great hope for a new life. The first two years were pretty darn amazing. She was happy to have a family. She was happy to start a new life with people who cared for her. She was filled with joy over being able to learn and do new things. Then she had her spinal fusion surgery and for some reason, even though we told her over and over again that it would only fix her back, she believed she would be healed and be able to walk. We have dealt this past year with her loss of hope and feelings of worthlessness about being a burden to those around her.
It’s a strange thing, considering she has never walked, but the loss of hope that she would one day walk, has taken it’s toll on her joyful heart. We go for periods of time where she can be content and turn it around, but her sadness over the fact that her life seems to have no worth because she is unable to do anything for herself except brush her teeth and eat, wins on too many days. Everyone has blue days and we allow her those, but this is much more than that and it breaks our hearts.
She is angry and she doesn’t know what to do with that anger. She rages and screams out. She can be angry for days. She refuses to talk to anyone, especially a therapist. Add the fact that no one has been there to teach her how to deal with her feelings, as we do with our young children, and we are left with a very angry toddler in a 16 year old’s body.
We have spent our days repeating over and over again that we want to care for her. We have told her, unlike her bio parents and her grandparents, we knew going in what her disability meant. Dan’s a physician. We knew as soon as we met her that she had a degenerative muscle disease. We knew and we loved her and she was then and always would be our daughter. But being abandoned when you are eight because you are too heavy to carry, has colored our girl’s world. She believes at some point, it will be too much and we too will abandon her. She’s striking out because she wants to be in control this time. She wants to be the person who leaves, but because of her physical limitations she is unable to, so she is left doing the only thing she can which is scream out in anger over a world that is unfair.
It’s been a very difficult year with her trying to get her to see that her life has worth. This is not sadness over adoption related issues but rather over the loss of hope of one day walking again. For Jasmine this year has been much like a person who finds themselves injured and paralyzed, learning how to find your purpose in life, when everything has changed.
Jasmine recently saw a movie trailer for “Me Before You”. She was so excited to go see this movie about a young man who is a quadriplegic who falls in love with his caregiver. Jasmine is a romantic. She loves romance and happy endings. She is often upset that she believes no one could love her since she is unable to do much for herself. I was excited about taking her to this movie, especially when I heard these quotes.
“You only get one life. It’s actually your duty to live it as fully as possible.”
“Push yourself. Don’t Settle. Just live well. Just LIVE.”
But then I read The Mighty‘s article about this movie. The movie ends with him ending his life with euthanasia. Really? We are trying our hardest to show our girl that you are more than your body. That life is worth living. We are trying to encourage her and get her to believe that what she was told in China is NOT the truth – that she does have worth. We are trying to show her that her life truly does have a purpose and that she has touched so many other lives.
Now I have to say that I can not go to see this movie with her because no matter how wonderful the love story portion of the movie is, I can not deal with that subject right now. She is at just too vulnerable a point. I know at some point we will have to have this very heavy discussion.
So for right now, we will continue to discuss what does “a life of worth” look like?
If you can’t or don’t go to college, does your life still have worth?
If you don’t marry, does your life have worth?
If you don’t have children, does your life have worth?
If you aren’t able to do any of your daily life cares, does your life have worth?
- When you are left to live with your grandmother, because you are told your mother can not stand to look at you, you doubt your worth.
- When you are abandoned because you are too heavy to carry any more, you doubt your worth.
- When you are cared for in an orphanage where you aren’t even worth the time to teach because the school is one floor above you, you doubt your worth.
- When you are left in a corner all day long because no one can bother moving you, you doubt your worth.
- When you are left to sleep on the floor with no blankets because someone can’t be bothered to lift you or cover you up, you doubt your worth.
- When you are told over and over again that the only way your life will have worth is if you walk, then what are you, as a child, to believe?
These are Jasmine’s “truths” that we have to overcome. She has talked about these facts often on her blog. (Flower that Blooms) She heard those truths for almost 14 years of her life. She has heard our “truths” for only 3 years. I know we will get there. I just wish I could get her to see herself through my eyes. I see a girl of great worth, who is compassionate and caring even though the world has let her down. I see a girl that can change the world with just her words. I see a girl of great strength and character. I see a girl when told she can dream about anything, chooses to dream about a day when there are no more orphans. I see a girl that others should try hard to be like.
I believe that a life that has worth is a life that touches other’s lives. I believe that you can have great purpose and never, ever fit the description of what the world believes is a life of worth. My goal now is to get Jasmine to believe it.
Here I am again sitting in a waiting room, praying for my child to make it through their open heart surgery. This makes number 8 for our family. Every surgery is different, they have varying degrees of complexity, some repairs easier than others, but every single time it is scary. You can’t have your child’s chest cracked opened, have them placed on cardiac bypass, and think it is just an ordinary, run-of-the-mill kind of day.
We are extremely grateful to be sitting in this waiting room today. We never thought this day would happen. When we first had physicians look at Ben’s file they were all negative. They said there was nothing that could be done. Ben had gone too long without a repair and his pulmonary hypertension had done it’s damage to his lungs. Then when we were home, we got hope in the form of palliative surgery. Then we were again given renewed hope by some mama’s on Facebook that encouraged us to get a second opinion. That second opinion brought us here to Boston where we were told they could do a partial repair.
Ben was been born with TGA, VSD, and an ASD. His pulmonary hypertension kept them from doing the full repair because closing his VSD would likely lead to a pulmonary hypertensive event that would lead to his death. If Ben had been born in the US, he would have had surgery within the first couple weeks of his life. His repair would have been complete and he would have gone on to live a relatively normal life. Because he didn’t get the care he needed right away, Ben developed pulmonary hypertension. His lungs were damaged. His fingers very, very blue. At the age of 5 when we were able to have Ben’s first surgery, he was unable to run around the couch and chase his siblings. Today Ben is unstoppable.
I have to admit it is hard for me because on one hand I want to stand on the mountain top and shout praise about God’s healing because I know that is what happened; but on the other hand, I am mindful of the parents who are praying just as hard and for some reason, they haven’t got the answers they were hoping for. I was once the mother praying for healing for her sons and the end result was not what I had hoped for. I even heard the words “Maybe you just didn’t pray hard enough.” Those words cut me to the core 28+ years ago. I know you can have great faith and still not get the answer you want. I know that although God’s plan is perfect, it is hard to accept at times. I know that joy and pain go hand in hand and that many lessons are learned through the hard road, but none of us really want to be on that journey.
So today I am praising God and at the same time praying for those that I know who are waiting for healing. I have seen too many babies die in the past year and I hurt for those families. So please, if you are praying for Ben and his healing, please include the families that are hurting from loss today. God knows their names and is holding them close.
Rejoice with those who rejoice; mourn with those who mourn. Romans 12:15
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.
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.
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.
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.
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.
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!
I recently posted this on our family’s Facebook group “Seriously Blessed by Adoption”. It seems to have resonated with others. I have never had a a post be liked or shared so many times. To be honest, I’m not sure why. I have said these same words many times, in many different ways. Maybe it’s because it shows a daddy’s love for his son. Maybe it’s because so many of these sweet boys wait. I’m not really sure why but I thought I would share it with those who just follow us on my blog too.
When we decided to adopt Maisey, our agency told us of a program China had started where you could adopt two at once. We prayed about it and discussed it with our family. Hope really wanted us to adopt a little boy with a heart defect like hers and since Dan and I were older and absolutely positive we would never be going to China again, we decided to proceed.
Every time I think about how positive we were that this would be the completion of our family, I chuckle. It’s a good thing I had no clue where God was going to lead us because I think I would have ran the other direction.
It was life changing when they placed Maisey and Ben in our arms. It was as if my eyes had suddenly been opened. Here was a 3 1/2 year old little boy, who wouldn’t talk, refused to let you call him his Chinese name, was starving and ate for hours after we got him. Ben slept with his bowl and food in his hands for months. With Maisey they threw her in my arms, like she was nothing, I can’t even explain it. To this day my heart hurts over the utter worthlessness with which she was treated.
I can still see Dan pacing in the registration office. Every other child had already arrived. I had been holding Maisey for quite a while at this point. All of a sudden Dan sees him outside the door, as soon as Ben walked through that door, Dan picked him up. That is not how it is supposed to work. You are supposed to wait until they hand them to you. There is paperwork and procedures that need to be followed. I often wish I had that moment on film, but it happened so fast. Four years later I can still see it and it still brings tears to my eyes.
Ben went to Dan and he was instantly at home. When we visited the orphanage two days later, Ben refused to go to anyone. He held on to Dan for dear life. What makes a child hold on to a 6 foot tall, bearded, white man and refuse to go to anyone who has cared for him during his whole life? Ben buried his head in Dan’s shoulder, wrapped his arms tight around Dan’s neck, and hid.
During those days, my eyes were opened to how much a child wants a family. My heart would never be the same again. I walked through the halls of that orphanage and knew most of those little faces would never know what family means. Just because you have never known the love of a family doesn’t mean you don’t want it or know, deep down, that there is something missing.
I often wish I could touch people on the shoulder and have those emotions or memories transferred to them. They would never be the same again. I thought I knew before we traveled. I thought I got it, but what I know for a fact is I was clueless. Completely clueless!!!!
Everyone needs to feel safe and loved. This is one of my favorite pictures from our trip. Ben loves his daddy. Ben found his safe place.
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.
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.
He likes the kid’s schedule. He likes the toys they play with. He likes to snuggle up with them to go to sleep.
He likes pretty much everything.
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.
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!!!
Everyone talks about the cost of adoption. It’s too expensive. You won’t hear me disagree with that. It is too expensive. When we adopted Hope 16 years ago, it was $10,000 for lawyer fees, court costs, and our homestudy. $10,000 worth of fees for us to be a family to a child that was left alone in the hospital. Was the fee too much? Probably! Was Hope worth it? YES! Every cent.
But the reality is there are many more costs involved with adoption. There’s the cost of time. The cost of heartache. The cost of little hearts waiting for a family. Medical costs. There is a cost to your family. You name it there’s a cost.
So what is the life of a child worth? I know people hate the word “save” when it comes to a child that is waiting for a family. I personally don’t have a huge issue with it because I have been saved. I was saved by my Lord Jesus Christ. I was literally saved by my husband from a life that was less than. Dan, through the gospel, taught me that others hurting me didn’t mean that I deserved to be hurt. Dan taught me grace and forgiveness. I had been through a lot in my early years and I believed I wasn’t worth loving. That pain, those awful, horrible feelings are what help me relate to my hurting children. How much is it worth to show another person their worth?
Was it worth the hours Dan held me while I cried? Was it worth the pain he felt until I truly trusted that he loved me? Everything in life has a price. EVERYTHING! I’m thankful Dan found me worth his time. I’m thankful he believed in me enough to stick with me. I’m thankful he saw my worth when I couldn’t.
Last night at Wal-Mart, Dan started talking to a family about why we were buying so many groceries. He explained we just got back from China. They asked how many children we had and Dan said “16”. The woman looked at me and said, “My mom had 16 children and she died at 42. Just be careful.” It would be comical if that wasn’t the first time I had heard this. I heard it when we adopted the first two. “You know you are older. You don’t want to take on too much.” I heard it after we came home with the four. “Four kids at a time would be hard on someone half your age!” I hear it because Lainey doesn’t sleep and I am sometimes really tired. “Take care of yourself. You don’t want it to kill you. You need to be around for your kids.”
These are caring words. I understand them. I believe them. I do need to take care of myself, but here lies the problem for me. What if adopting all these kids makes me die at 75 instead of 85? Wouldn’t 10 years of my life be worth it to improve theirs? What is an ok cost for bringing a child here and getting the surgery they need that will extend their life? What cost is ok for keeping them out of an adult institution where it is survival of the fittest? What cost is ok for letting a child feel love? What cost is ok for giving someone the unconditional love of family?
If it costs you a vacation, is that ok?
If it costs you sleep, is that ok?
If it costs you friends and family, is that ok?
If it costs you in your free time, is that ok?
If it makes you dead tired, is that ok?
If you are emotionally drained and feel you have nothing left, is that ok?
How much would be okay to spend for an adoption? $10,000? $15,000? $20,000? I believe it is about so much more than the money involved. We all waste money. We all find money to spend on the things we really want. We want a new car so we are willing to borrow for six years to pay for it but we can’t borrow for six years to pay for an adoption? I don’t think that money is the true cost that is stopping people.
I believe it is much like the cost of truly following God. I never gave it much thought in my 20’s or 30’s. I believed in God. I went to church on Sunday. I tithed. I was a fairly good person. I was kind to people. I helped when I could. But if you truly have a relationship with the Lord, there is a great cost in following God and His commands. There are many stories in the Bible about giving up everything and following Him. Then Jesus said to his disciples, “Whoever wants to be my disciple must deny themselves and take up their cross and follow me. – Matthew 16:24
How many of us are willing to give up anything? How many of us would be willing to deny ourselves instant gratification for what we truly want? How many of us complain when we stand in line too long? Or complain when the Sunday morning service goes too long? Or when there is no internet connection? Would we give up cable and our weekly pizza night to adopt? Would we feel it was worth the cost to take our children out of sports or dance and make them share a room? What is okay to give up?
People who are passionate about things give up much to reach their goals. Marathon runners do it. The climbers of Mount Everest do it. Olympic trainers do it. They are willing to sacrifice much to reach their goal. When something has great value to you, it is worth the cost. So why should adoption be any different?
The cost of loving Liam isn’t much. It’s pretty darn easy. He’s adjusted fantastically. He likes American food. He has had no jet lag. He’s gone to sleep easily and slept through the night from the very first night. He follows the kids and does what they do. He’s jumped into doing chores, even though he wasn’t asked to. He loves his siblings and the games they play. He is joyful about every new thing he gets to experience. It has been pretty darn effortless.
But the cost of loving JJ is much more. She is hurting. She strikes out. She is angry. She doesn’t trust. She does not believe she is worth any of this. You can not tell her she is pretty. She will shake her head right off her shoulders. She will not let you comfort her. My heart hurts because I know she has been hurt. What I have learned through the lessons of God and the patience of my husband is that love can heal. Trust can be earned. Fear can be erased. Forgiveness can be achieved. Grace is a beautiful thing.
JJ deserves unconditional love. JJ deserves a chance to grow up to be all she can be. Is she worth the medical costs? Yes. Is she worth the pain we feel from rejection? Yes. She is worth the time and energy that will be expended. She is worth the tears I will shed. She is worth the sleep I will lose. I believe the cost in not loving JJ is more than the cost of loving her. I believe she deserves to be safe. I believe she deserves to be happy. I believe that whatever it costs me is worth it.
My life is not worth more than JJ’s. My time is not more valuable than hers. God loves her with the same abandon He loves me. I may not have understood what is truly important in the first part of my life, but I understand it now, and the cost of pretending it’s not true is just too much!
“I want to run my life in that manner. I want the second half to be stronger than the first.” We we can run faster as the race goes on in our final years, we can sprint, knowing that we can collapse in His arms.” – Francis Chan
Edited – This blog post is not directed towards anyone. It is not meant in a negative way. I merely wanted to explain that I don’t know. I don’t know how you decide. I wish I could tell you. I wish I could look at someone and say, “Adoption would be a great fit for you or I think God has other plans for your family.”I want to share with you how I have made my decisions. Every one of the excuses at the end of the blog I have said. I had to work through whether or not those excuses truly stood up or not and I shared how I make those decisions.
I’ve been asked this question over and over again – “How do I know if I should adopt?”
I was thinking back to our decisions to adopt JJ and Liam. I drug my feet on adopting JJ. I said, “I was too busy. I’ve done my part. I’m tired. I’m worn thin.” I thought JJ was beautiful and would make a wonderful daughter but her needs weren’t simple. We are talking possible kidney transplant or dialysis. Her kidneys are very sick. You aren’t a 25 pound 8 year old because you are healthy. Could I add that to my plate and do it well? Would it hurt my other children? Would it take away from them? How could it be possible that we were the right parents for her?
Then one night Elyse said to Dan and I, “If JJ dies and we don’t try, I don’t think I will ever be able to forgive myself. I know she is my sister.” Her words didn’t instantly make me say “yes” but they did make me think long and hard about it. It means I looked at every possible scenario and wondered if I could handle it. If I am honest, I knew the moment I looked at her picture, that she was my daughter and I was letting fear stop me from proceeding. I came to realize that doing nothing was just as bad as standing in my living room looking at one of my children, and deciding I was too busy to care for their medical needs and letting them die. I pictured myself at the end of my life and God showing me JJ’s picture and Him asking me “Why didn’t you do something?” At that moment, I knew I had to do something.
The decision to adopt Liam was instant peace. I have never felt such overwhelming peace. Yes, this is my son. Yes, everything will work out. It makes no sense but I know it is true. How can you explain that to someone? For me, it’s God. If you don’t believe in God it becomes me being some overemotional, crazy person. There’s been no magical formula that happens so we know we should adopt. Every one of our adoption journeys has been different. Sometimes it brings me to my knees and I can’t imagine not proceeding. Sometimes it’s just been an overwhelming peace. Sometimes instant tears. Sometimes it is someone else in the house who has been moved by a child and after much prayer you realize it is right.
This is why it is hard. This is why I can’t answer for you. The truth is I can’t tell you if you should adopt. I can’t tell you whether it is right or wrong for your family. I can’t tell you how to convince your spouse. I can’t tell you it won’t be too hard. I can’t tell you it won’t change your life. I can’t tell you that your bio children will do fine with it. I can’t tell you that your friends and family will be supportive.
What I can tell you for sure your journey will have moments of difficulty. Even when the child adjusts amazingly well there will be things that come up. Because it’s life. Life is messy. Adoption comes from a place of pain and loss. There is hurt involved. There are emotions that will overwhelm. You can’t avoid it. It may be easy and it may be hard, but I believe it is worth it. The hardest parts of my life are what have made me rely on God more and have grown my relationship with Him. The hard times have led to the most joy, maybe because I can appreciate it more.
What I can tell you as an absolute is if you are a Christian, God did NOT call you to be comfortable. God didn’t call you to sit back and let others do everything. God asks you… NO! He commands you to be His hands and feet. Your call may not be adoption but you are being called and if you feel comfortable and never stretched, I would say you truly need to look at your life and see what it is saying.
People should know what you stand for. People should know what you care about. People should be able to look at your life and see what you are passionate about. Otherwise you are just coasting. You are just existing. There’s been a lot of talk in the press about this lately. People claiming to be Christian but their words and actions don’t line up with what the Bible teaches. What if the camera was turned on you? Would your words and actions line up?
Are you living a life of fear and selfishness? Are you living a life of self-centeredness? Are you concerned about anyone else? Do you give as little as you can or do you do all that you can in every way that you can with your time, your words, and your money?
I’m going to share one of the most thought provoking statements Elyse has ever uttered. She is 10 and has been home a year. She is a very bright girl. “Mama, I think so many children are not adopted because too many people are afraid to say “yes”.”
She had me pegged. I was fearful. Fearful that this adoption would be the one that tipped the cart. Fearful that even more people would talk about how crazy we were. Fearful that I just couldn’t handle it. Fearful to put my heart on the line again.
Are you fearful? Are you afraid? I say this is a good thing. Read everything you can. Prepare yourself in every way you can. Surround yourself with supportive people, because there are always doubts about what you can handle, whether you can afford it, whether you will have the resources, what it will do to your family. No one goes into adoption thinking they have it all figured out. Everyone has moments of doubt or worry or at least they should. You can know God is calling and step out in faith and still have fear. We are only human.
Having a family and belonging is a beautiful thing. It’s something we all want – to be loved for who we are. We want to belong, to have roots, to have a safe place to fall, and somewhere to call home. Sometimes when you adopt it works like it did with Liam. It makes no sense that a 5 year old would understand what family means, but he seems to. He ran to us and hasn’t looked back. His foster mom prepared him well. She seemed more like a teacher who was training him and getting him ready for his life. It felt like a graduation when he left as she said, “Go and be happy!”
Liam’s adoption day was wonderful but it’s not always that simple. Sometimes you show up and the child is raging. Sometimes when you show up the child is so shut down you aren’t sure you can ever reach them. That is where we are with JJ. She’s been hurt. She’s seen friend after friend be adopted and she wasn’t chosen. She has obviously been told that she has very little worth. She hides in public. She won’t look in a mirror. Her little head hangs low and she won’t talk. Does that mean that this adoption was wrong? NO! Should I be upset and have my feelings hurt because she isn’t instantly throwing herself at me and saying she loves me? Not at all. Why?
BECAUSE IT’S NOT ABOUT ME!!!!!
I believe with all my heart that if a child was in your front yard you would do everything you could to make sure that child was safe. You wouldn’t be wondering what is in it for you. You wouldn’t be mad they didn’t instantly love you because you were helping them. You would just help. It’s easy to ignore a hurting child when they are just a faceless number. It is much harder once you see their face and it is darn near impossible once you hold them in your arms.
I can’t tell you when is the right time to adopt. I can’t tell you if you are honestly being called. I can’t tell you it will be easy. I can’t tell you that you won’t have to make some changes in your life.
But what I can tell you is that if God is calling, He will make a way. I can tell you that money shouldn’t stop you because God provides in miraculous ways. I’ve seen it happen too many times to say it isn’t true. I can tell you that once you give up your comfortable life you will be changed and blessed in ways you couldn’t even imagine. I can tell you that the hard is worth it. That every child is worth it. That sleepless nights and rages while they come to believe this is real, the testing limits as they learn, and tears spilled over the unfairness of it all, is worth it. I can tell you that watching someone blossom with love and caring is a miraculous thing.
I’ve thought long and hard about what I want you to consider about adoption. If you truly feel you are being called to adopt, but fear or some other excuse is holding you back. I want you to consider this. Truly picture it. This is what I do when I consider my actions. Our minds are too often centered on worldly things and ideals but this is not our true or final home. Picture yourself on the day of your death, as you stand before God, and He asks you why you didn’t proceed when He laid the thought of adoption on your heart. Look Him in the face and utter your excuse, whatever it may be…
We don’t have the room in our house.
We don’t have the money.
I don’t want to hurt our family.
I am afraid.
I am too old.
I’ve already lost friends and family over adopting.
Our life is comfortable and I don’t want to mess it up.
I’ve already done enough.
I am tired.
If you have been thinking about adoption for a long time and can stand before God and utter your excuse, whatever it may be, and have peace with it, then fine BUT if your excuse doesn’t ring true, then maybe you already have your answer.
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.
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.
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.
- Chinese Children Adoption International
- Hats for Gracie
- Love Without Boundaries
- New Hope Foundation China
- Show Hope
- China 2013
- China 2014
- 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