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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.
