Archive for the ‘Benjamin’ Category
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The cost of loving Benjamin
A friend of mine posted a comment about Ben and it got me to thinking about what people really think when they hear that we chose to adopt Ben knowing that he may not live until we got to China, that he may have a year, or he may have 20. No one knows. We know his heart is very, very sick. His oxygen saturations are mid 60’s to mid 70’s. He is very, very blue. Ben’s diagnosis is uncorrected transposition of the great arteries. You can goggle this so I won’t take the time to explain it here. This is a relatively easy fix if you are born in the U.S. and it is corrected right away. I say relatively easy but open heart surgery is always a risk and ALWAYS scary. When this heart defect is left untreated, it leads to pulmonary hypertension and a host of other things.
I’m going to go back a little bit and tell you how our journey of faith started. Dan and I were high school sweethearts. We married young. Two years later we were planning on starting our family. I got pregnant with twins and life seemed so perfect. At 28 weeks, my water broke, Kyle died at 5 days of age, and Codey spent the first 14 months of his life in the hospital with every complication you could imagine. Codey went home trached and on a ventilator. Kyle’s death taught me many lessons about what is important in life. I would have given anything to hold him for a month, a year, or even a day more. I wanted my child with me but I also knew his life had meaning. God didn’t make a mistake. There was a purpose. I keep seeing the threads of this purpose as the years go by.
12 years later while Dan was a fellow in the hospital, he took care of a little baby who was going to be born with Hypoplastic Left Heart Syndrome (HLHS). The pre-adoptive parents had backed out when an ultrasound revealed this heart defect. Her biological parents opted to leave her in the hospital and not do surgery. It’s a complicated surgery and the hospital could not make them do surgery. When parents have a child with HLHS, the hospital will present them with three options. These options are a 3 part surgery, a heart transplant or to allow your child to die. They chose to let her die. Dan fell hard for this little girl. He went to the gift shop and bought her booties and stuffed animals; he wrote an order for the nurses to hold her hourly; and he called me. We had a family meeting with our children, Cassie who was 6 at the time and Zach who was 10. We all decided to bring her home and love her so she wouldn’t die alone in the hospital. Cassie said she had always wanted a little sister. She never knew Kyle, but he was still her brother. She would love her sister even if it was for only a couple weeks and then got on her knees and begged for this little girl to be her sister. Zachary said no child should die without love and without a name. We began the process knowing that we could proceed with the adoption even after her death and she would always have a family and a name. It’s a long story and I’ve written about it many times so I won’t say a lot more but we set out knowing we could love this baby and let her go. We believed that she would go to heaven and we would one day see her again. We believed this because we had the truth in black and white. We believed it because we had made it through Kyle’s death and we knew we could do it again. Hopey’s story didn’t end there though, we took a chance on surgery and today she is a beautiful 13 year old girl, and the rest is history as they say.
Which leads us to why we decided to adopt Ben. We had already decided to adopt Maisey, who is deaf, when CCAI presented us with a program that China had recently implemented that allowed you to adopt a second child, who has more health issues, on the same adoption trip. We talked about it as a family and we prayed and prayed and prayed. Hopey, who was 12 at the time, said she would like to adopt a little boy with the same heart defect as hers. We told her we didn’t think it was possible to adopt a child with (HLHS) but we were open to the idea of adopting a boy with a heart defect. Dan always nicknames our children before they are born or adopted so we have a name to pray for. We decided to start looking for our little boy, Tigger. We started looking at the lists of children available for adoption. We saw Ben’s picture and knew he was ours the moment we saw his picture, not knowing what his medical condition was. The second picture sealed the deal because in it Ben was holding a stuffed Tigger. Sometimes God’s signs are subtle and sometimes they knock you up along side the head.
Another family had Ben’s papers when we called CCAI. I remember crying because how dare they have the papers, he was my little boy. The chose not to adopt him and we sent his medical records off to a couple of the cardiologists Dan knows. They all said it was untreatable and had a horrible prognosis, but we knew Ben was our son so we chose to proceed. I remember thinking “What if he dies before we make it to China? Will I still trust God’s plan?” I also remember thinking, “How many days would make this worth it? How many days would I need as Ben’s mama to feel that the joy outweighed the pain?”
I will tell you that it took just one day. One day made it all worthwhile. Ben came to us a withdrawn, broken child who had almost given up on life. A few days of food and love in a hotel room and he was running back and forth laughing. He is such a sweet, sweet soul. I’m going to share this story so you can get a glimpse of Ben’s heart. Ben was almost 4 and weighed 23 pounds when we got him. He ate for the first 2 or more hours when we got back to the hotel. Ben slept with a cup in one hand and food in the other. He cried if you moved his food. He held on to it for dear life, but if Maisey (who he’d never met before) asked him for food, he’d give it to her.
When we first got him, Ben didn’t make a sound. He had night terrors that ripped my heart out. He was so quiet. Too quiet. Ben looked dejected and wouldn’t even cry when he was hurt. Late on day 2 in China, found Dan having to run an errand. When Dan came back and knocked on the door, Ben yelled, “Dad!” It was the most beautiful sound. The very next day he ran up to Dan, hugged his leg and said “I love you Daddy!”. You cannot put a price on that. That same day I tickled him and we heard the most amazing sound – his laughter. Ben has a laugh that is contagious. It is the most wonderful sound in the whole world, truly priceless. Ben makes you appreciate life. Ben finds joy in everything. Ben is the walking definition of love and caring.
My children’s hearts are huge. They have a very strong faith. They are willing to go forward even though they know how uncertain Ben’s future is, but that doesn’t mean they aren’t afraid. It doesn’t mean there aren’t tears. I’ve held my girls on many days and dried their tears because they don’t want to lose their brother. The “what if’s” abound. What if he dies in surgery? What if it makes it worse? What if he needs a heart transplant? Dan and I have asked a lot of them, but the truth is they have learned a lot too. They know you shouldn’t take things for granted. They know every day is a blessing and you should always tell people how much you care because no one is guaranteed tomorrow. They know what is truly important in life and it is not things! We all have our moments of fear and tears. It’s hard even as an adult. Sometimes I just sit and hold him, look at his face and wonder if this will be the day. But I also know I have the choice to be sad and filled with fear or joyous and grateful that I get to love this little boy. I choose joy. I choose a grateful heart. I choose to trust God and His plan.
Sometimes you can’t figure out why things happen or where it will lead or what God’s plan is, but I can guarantee you there is a purpose and a plan and it is perfect. This saying says it all. “There are moments in your life that make you and sets the course of who you are going to be. Sometimes they’re little, subtle moments. Sometimes they are big moments that you never saw coming. No one asks for their life to change, but it does. It’s what you do afterwards that counts. That’s when you find out who you are.”
I’m not any more special than the next person. I hope when people look at my life they understand that my faith is what makes this possible. My strength lies in a God that is perfect and a God who is much bigger than I am. My hope lies in a future, where I spend an eternity with these children and their “whole” hearts. Kyle’s death made me strong enough to adopt Hope and Hope’s life made us strong enough to adopt Ben and Ben’s beautiful life has led us to Evie (she has HLHS) and Elijah (he has pulmonary artresia). I know my children are ill. I know their lives will be shortened. It’s not an “if”, it’s a “when”. I also know Codey was supposed to die on at least 20 different occasions, and he just turned 25. No one can guess which day will be his last only God knows the number of Ben’s days. I choose to turn my worries and my fears over to God. I want to spend my time enjoying being his mama. That is a blessing that no one can ever take away from me. Ben has worth. Ben’s life has meaning. Ben makes a difference. The cost of loving Ben is high, but the cost of not loving Ben is even higher.
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Benjamin
Benjamin’s surgery has been scheduled for February 13th. I’m frightened but excited at the same time. The choices of trying to make his quality of life better or leaving things as they are and enjoying every single moment that you have with him, are not easy choices to make. Praying for God’s wisdom. I’m glad that Dan is able to understand and help make the best possible choices with the information we have. It is a blessing.
I’ve been here before with Hope. I know what to expect. It’s a scary time. I also know that God has plans for Ben and that God has always known the number of Ben’s days. I want to let my little boy’s hands be pink. There is a chance his sats will go from the high 60’s to mid 90’s. That would be amazing. I want him to feel better. But it is always hard to hand your child to another person and wonder if you will be able to hold them again. Praying that God is not finished with my little boy. Praying that God will heal little Benjamin in any way that He can. Please keep Ben in your prayers during the next month. He needs to stay healthy and there is a lot of illness going around right now. We will keep you updated on whether or not he is allowed to have surgery, what the doctors say and how he does. Thank you for keeping Ben in your prayers. He is a sweet, sweet little boy.
I just have to share this story, which shows his sweetness. The other day Maisey climbed on a table and was trying to get some stuff off of a shelf. (Turn your back on her for a second and she is into something.) When I was telling Maisey not to do that, trying to wipe off her hands because she found some markers and colored her hands, Benjamin was stroking her hair and saying, “Maisey, don’t do that. You can get hurt. Ok? Don’t do that. I love you.” He didn’t yell. He just sat there, looking sweetly into her eyes, stroking her hair, and asking her to not do that because he didn’t want her to get hurt. He is a sweet, sweet soul. I love this little boy and no matter the outcome, I will praise God who let me share in his sweet life. I am beyond blessed to get to have had even one day as his mommy, but I’m praying that I will have many, many more years to hear him call me mom.
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- Blue, little hands
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- Love this face. Who wouldn’t love to just snuggle on the couch when you get to hear his laughter?
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- “Don’t go Hopey!”
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- Have I mentioned just how silly Ben is?
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- Dapper little man!
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- Yes, he is a ninja in a cozy coupe with a cell phone.
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Perspective
I’ve been listening to people talk about perspective lately. The world seems to be just a little crazier with the shootings in Connecticut and Oregon. I hear them say that some of the things that they thought were important don’t really seem as important now. We have the choice to want perfection and everything in it’s place or allow grace to those people and things in our lives that may be a little less than perfect. I am blessed to have gone through what we’ve gone through with Codey and Kyle. Their live’s have taught me to be grateful for every day you are allowed to live; to not get caught up in the tiny things that go wrong; to forgive when necessary, to say I’m sorry when you need to; to help and encourage those that you can; and to truly be grateful for everything that you have .
Every day I wake up and have the choice to be filled with fear that today may be Ben’s last day. I can dwell on his little blue fingers. I can dwell on his raspy voice when he plays too hard. I can dwell on how little he is and how low his platelets are. I can think about how he could fall and cause a hemorrhage. If I dwell on any of those things though, I miss out on all the wonderful moments throughout the day. He is so funny and so sweet. He is compassionate and caring beyond his years. Every day with him is a blessing. I don’t want to lose even one minute worrying about things that I have no control over. Only God knows the number of his days. I will leave that in His hands and enjoy every moment that I am blessed to spend with sweet Ben. The truth is it is that way with most of my children. I could go on and on about them and the trials their health issues bring to our lives. The truth of the matter is that it has given me a whole new perspective on living.
On the other hand, I have a son and daughter who are both so bright. I watched them when they were little and dreamed all the worldly dreams for them. Good grades, good schools, good jobs, etc. It’s not that those things aren’t important, but a good foundation in Godly values is so much more important. Compassion, love for others, finding their purpose and purposely living their lives is what it is all about. The lessons our adoptions have taught them are priceless. It has given them true perspective on what is and isn’t important.
The truth is we spend our days worrying about trivial things. Truly they are trivial. I bet you in two years you won’t remember what car broke down or which appliance wasn’t as new as you’d wished. You won’t remember what you purchased for Christmas. You won’t remember what your child said when they talked back. You can be upset about some wrong that has happened and then you turn on the news and see that 20 children have lost their lives for no reason at all. You grab your child and hug them a little tighter. You wonder why you screamed about their bed not being made or the fact that they were moving so slow this morning. I’m not saying that it isn’t important for our children to have rules and be disciplined. I’m just saying that it is a good reminder that some things aren’t as big as we make them out to be.
For example, if you knew that your husband was going to have a heart attack next week, how would that change how you treated him? The truth is do you know that he won’t? Do you have a guarantee that you’ll have another week to make up with him, to treat him right, to let him know just how much he means to you? How about your daughter or son? Do you know for a fact that they will live to be 50, 60, or 70? What if they encounter a drunk driver? What if they are diagnosed with cancer? What if your healthy 6 year old suddenly becomes ill and is diagnosed with lupus? Believe me….there are no guarantees.
Why does it take some major life event for us to pay attention? God tells us over and over again in His book to love our neighbor, to forgive, to treat others as we want to be treated, to care for the orphan and the widow. Why do we ignore these commands like they are just suggestions if we have the time and energy to do it? These should be our life goals.
The truth of the matter is there are approximately 147 million orphans in the world. There are approximately 250,000 children waiting to be adopted in the U.S. Why are we not standing up as Christians and doing something about this? My sister-in-law wrote a status on her Facebook about the ASPCA and their ads. Her 5 year old daughter asked her if they could be part of their team. She was so moved by the conditions of the animals. Why aren’t there commercials about children? What if they showed you a horrible orphanage and you saw your child’s face? What would you do to go get them? What if God has a child picked out for you and you are just leaving them there? What if we Christians put our values in what is really important? What could we change? We should all live generously. We should all be giving not if we have a little left over, but we should be sharing our wealth. We are so blessed as a country. We have so much. How much more is enough for you? What will be enough for you to decide you can share? When will you decide you can afford to help? What will it take to change your perspective?
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Fun Friday Photo or Silly Saturday Scenes….
I haven’t posted any new silly pics of the kiddos lately.
How to tell when you are loved! Siblings wait in line to be held.
The new loooonnnnnggggg table. Now we can all sit together.
Love this face. Who wouldn’t love to just snuggle on the couch when you get to hear his laughter?
Maisey and her BIG hat taking care of her BIG family (there’s 5 babies in that buggy).
Cutest dog pile ever!
Ben does not like sand or corn for that matter touching his feet.
This is what happens when you let Gracie do your hair. 🙂
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Benjamin’s 4th Birthday
It was a Thomas the Train party at Mema’s house in Fort Dodge. We actually had his birthday on the 2nd because we weren’t sure what he would think about having a birthday two days in a row. We were told that they didn’t have cake or presents at the orphanage, therefore, we are pretty sure that Benjamin has never had a birthday party and we weren’t sure he would understand what it meant. There were plenty of birthdays in between to get him ready for his birthday. Maisey, Grace, Hope, Codey, Cassie, Dan and Zach all had their birthdays with cakes and presents. He was as ready as he could be.
Benjamin was so sweet and so happy with his presents. He said a couple “cools” when opening his presents. He loved his cake and couldn’t wait to blow out the candles. When we got home and I got ready to take him out of the car, I asked him if he had a nice birthday. Benjamin grabbed me around the neck and in his most joyous, energetic voice he yelled, “Yes mama! Thank you God!” He even signed thank you and God as he was doing it. It was a very sweet moment.
Benjamin is very observant. He watches things and seems to just be taking everything in. He often just stops whatever he is doing and runs over to hug me and tell me that he loves me. He starts or ends everyone of his sentences with mama when he is talking to me. It’s like he is just so happy to get to say mama. He is a very bright little boy. He is very compassionate and sensitive. He is a joy to get to mother. He is curious about how things work. He loves to put things together and build. He loves cars, trains, and airplanes. He is just joy and love. Benjamin is just a sweet, sweet soul. He is Maisey’s protector. Whenever he gets anything he makes sure there is another one for Maisey. If we get in the car, he makes sure Maisey is buckled. If Maisey is doing something she shouldn’t be, he corrects her in the sweetest way possible. He is a great big, little brother. He laughs so easily, which just shocks me considering where he came from. He has the best laugh. You can’t help but laugh when you hear it.
He has blessed all of our lives so much with his sweet presence. No one knows, except God, the number of days we will get to have with Benjamin but every single one of those days will be lived to the fullest because that is how Benjamin lives. He is just so happy to be alive!
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Fun Friday Photo (mini’s edition)
Learning rock, paper, scissors
Finally need new clothes & I LOVE them!
Have I mentioned just how silly Ben is?
Too cute!
Going for a drive!
Photo bomb from Hope. Mei loves the noodles!
"Don't go Hopey!"
Yay for Hopey!!!!!
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Things you never imagine happening….
For those of you who don’t know my son Codey, he is 25, severely physically and mentally challenged. One of his favorite things to do is open his window and listen to the cars go by and the birds sing. He has his big, fake leather, comfy chair parked right there under the window. He would sit there for hours if I would let him. We actually partially unscrew the screw in the lock to keep him from being able to unlock it and open the window even when it’s 100 out.
I admit that I worried about Codey and how our new kids would do with him. He doesn’t like to share toys. He doesn’t like change. He doesn’t like his wheelchair so he gets around our house by scooting on his bottom. He growls when he’s upset and can yell very, very loud. How do you explain that behavior to a child who is mostly deaf but can hear really loud noises or a child who 4 months ago only spoke Mandarin? It’s one thing to adopt a baby and have them grow up around it. It is a completely different set of issues to take a 2 and 3 year old and introduce them to him.
I’m sure you’ve heard me mention before that you should never worry because the things you worry about often don’t come to be and you couldn’t even possibly imagine what might come to be. (Worry does not empty tomorrow of its sorrow, it empties today of its strength. – Corrie ten Boom.) I’m not a worrier by nature, but thoughts do cross your mind – no matter who you are and how strong your faith is. You think “How am I gonna handle this if….”. It’s just human nature. I wondered about whether they would get along. What if they didn’t like each other. What if Benjamin and Maisey were afraid of him. Codey is a very tenderhearted, sweet, affectionate, loving little boy. He may be 25 but he is a small child mentally. What if their behavior made Codey sad?
It seems I had nothing to worry about. The other day, I found Codey trying to help Maisey on to his chair. There was no growling involved. No yelling whatsoever. Just secret laughs and quiet whisperings of who knows what. Codey was politely helping Maisey up on the arm of his chair and what does she have in her hand? A SCREWDRIVER! How does a 2 year old deaf girl communicate with a 25 year old non-verbal boy? I’m pretty sure I never even considered this happening. Needless to say, I worried for nothing. AGAIN! They are the best of friends and I am one blessed mama. Codey shares his toys with them. Codey shares his food with them. I don’t know how Codey knows that they were hurting souls, but he did. God is good!
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Fun Friday Video
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Fun Friday Photo
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Surrounded by miracles
Many people look at my life and think it’s crazy. They tell me they could never do it. They see only the health issues. I don’t see those things when I look at my children. I see beautiful, happy children full of life and compassion. I see miracles all around me. Here are just a few of them.
Recently we learned more about Maisey’s story. We knew her time in the orphanage was rough. We had heard stories of babies who weren’t able to feed right. We knew that the House of Hope had found her, took her to their foster home and nursed her back to health. What we didn’t know is that when they found her she weighed 3 kilos (6.6 pounds) at 6 1/2 months old. My poor baby was starving. I hate to think of her lying there crying and not having any comfort. She is so sweet and so funny. She has brought so much joy to my life. The miracle that is her life is so amazing to me.
Becoming an Iowa girl!
We had also learned that our sweet Benjamin probably shouldn’t have been put on a list. They’ve opened up the special needs category a little, but we have been told that China doesn’t put children who have poor prognosis on their adoption lists, but somehow Benjamin found his way onto one. Don’t know how it happened but I’m so blessed that he did.
He sang "Happy Birthday to me!" all the way through Target.
We were told numerous times that Codey wouldn’t make it past the week, then a month, then a year. I don’t know how many times we called family down because they said he wouldn’t make it through the night. We were told he would be blind (he isn’t), deaf (he isn’t), and in a vegetative state….well, see for yourself.
He's a happy boy!
Then there is Hope, whose biological parents lived in the south, came to Iowa to deliver for pre-adoptive parents who lived on the east coast. I don’t understand it, but I’m so happy that it happened. On top of that is the miracle that Dan was in the unit and heard her story. Not to mention the miracle that she made it through all her open heart surgeries. I am so blessed to have her in my life.
She is such a pretty girl!
Or the fact that I just happened to have a routine ultrasound where they picked up my blood vessel rupture with Grace. I was having no pain and no contractions. Everything felt fine. They said just a few more hours and she probably wouldn’t have made it. Our doctor and Dan’s friend said after he pulled her out, and now that he knew she was all right, he could say that was the most blood he had seen and had a baby come out okay. Add to that, the fact that I was 40, had my tubes reversed after 12 years and got pregnant the very first month. The doctor asked if I wanted them tied again to which I replied a resounding YES! He said good because I don’t know how you got pregnant any way. One tube is way too scarred and the other doesn’t even look like it’s hooked up. The GRACE of God is alive and well in my life.
Grace has the most compassionate heart!
My life is full of happy, wonderful miracles! I am so very, very blessed every day to get to be their mama.
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