Archive for May, 2016
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
- Chinese Children Adoption International
- Hats for Gracie
- Love Without Boundaries
- New Hope Foundation China
- Show Hope
- China 2013
- China 2014
- China 2016
- Congenital Heart Defect
- Evangeline Faith
- Family Life
- Food for Thought Friday
- Jasmine (Shuang Shuang)
- Jasmine's Dream
- Lainey Rae
- Love Without Boundaries
- Making a difference
- Muscular Dystrophy
- Orphan Care
- Thoughts to ponder