Last week I was on the schedule to share a devotion with the rest of the Deacons of our church. Not knowing where to begin sharing with a group who for the most part have ten to fifty years of life and living ahead of me, I just sat down and began writing our story of the past few months. Robert then joined me on Wednesday as we shared the story with the rest of the congregation. For those of you who have joined this blog somewhere along the way, this may be a good “catch up” of our story, as well as an opportunity to see some of what I have distilled from this experience. For those of you church members who have asked for copies of it – here it is. I hope that it serves as an encouragement to you and a reminder of what a Good and Perfect God we serve, even in the midst of crisis.
Many of you have battled heath crisis yourself, lost parents, siblings, children or spouses and faced other devastating news. You know that these are the experiences that shape us, that make us who we are, that define our faith and that teach us how to understand our God even better. Here is our story.
In July, Robert and I took a special trip to Ireland to celebrate our second wedding anniversary. We came home with a really special souvenir – we found out shortly thereafter we were expecting our first child. Some of you have known me all my life and you probably remember me as a toddler myself carrying around baby dolls and pushing strollers. I have wanted to be a mother for as long as I can remember and have such strong maternal instincts that my friends in high school and college used to even call me “Mama Chrissy.” We were both filled with joy and excitement and the typical anxiety and nervousness that comes with knowing your life is going to change forever. In August we shared the news with our families and close friends and by October there was no hiding it from anyone that a new addition was on the way. On Thursday, October 28, we went for our routine 18 week ultrasound and to find out the gender of our baby. The sonographer told us we were having a girl and I squealed in delight. We spent about thirty minutes flying high on this exciting news before the doctor came in to give us more news and the “other shoe dropped,” so to speak. They had found on the ultrasound what they suspected was a diaphragmatic hernia – basically a hole in the diaphragm that has allowed the stomach (and sometimes other organs) to migrate into the chest cavity. We were immediately referred to OB specialists at Forsyth Hospital for a level 2 ultrasound and more tests. The following Tuesday we went to Forsyth Hospital filled with trepidation, but still hoping for the best. Perhaps it was a misread, maybe it was just a small stomach bubble, hopefully this will all resolve itself and be nothing. The sonographer was quiet while she took her scans and when the doctors came in to talk with us after this test, the news was grim. Not only did she have a diaphragmatic hernia, it appeared to be very severe and was accompanied by several other “soft indicators” that led them to believe we were probably facing a chromosomal disorder. They talked to us about Trisomy 18 and Trisomy 13 and threw around phrases like “stillborn,” “little to no chance of survival,” and “termination.” They encouraged us to have an amniocentesis done to find out for sure what our baby had.
Robert and I left that day at our lowest point in our lives. We spent the next forty-eight hours just crying and holding each other and trying to wrap our minds around what we had been told. Our regular OB is also a good friend and she came to our house the next day to talk with us more and answer our questions once the dust had begun to settle a little. She also pulled some strings and got us in very quickly for several appointments. The next few days were a blur of tests: amniocentesis, MRIs, consults with pediatric surgeons and cardiologists and neonatologists. Our medical vocabulary expanded exponentially as we sought to learn and understand as much as we could about our baby girl.
By Friday of that week, the tide had started to change a little. Our amnio results came back and showed no chromosomal abnormalities – eliminating the sure death sentence for our child we thought we had been given. The MRI showed that while the diaphragmatic hernia was certainly present, and her stomach and bowel were in the chest cavity, that there was a surprisingly significant amount of right lung tissue. The pediatric surgeons and neonatologists at Brenner’s explained to us the course of treatment for babies with this condition and helped us learn that many do survive and go on to live normal and healthy lives. The national survival rate for babies with CDH (Congenital Diaphragmatic Hernia) is only about 50%, but the rates are a good bit higher at Baptist – somewhere between 70-80%. After staring at 0% and trying to come to terms with this, we truly felt like we had been given her life back with incredible odds.
We’ve spent the months since November trying to adjust our expectations. We know that right after she is born at Forsyth Hospital she will be intubated, stabilized and transferred to Baptist. Sometime after that, she will face surgery to repair the hernia and will hopefully be able to wean off of the breathing support and medications in order to come home soon. Hospital stays for babies with CDH range from 3-4 weeks to 7-8 months. One of the challenges of CDH is that there is no good way to predict prior to birth how babies will do. Some with severe hernias defy all odds and make it and some with significant lung tissue fail to be able to breathe and oxygenate blood well enough to survive. We don’t know how our girl will do, but we remain extremely hopeful and optimistic. She comes from a line of stubborn fighters and we hope that she will be filled with a tenacious spirit that fights through the first weeks of difficult times in order for us to bring her home safely to begin our lives together.
I tell you this story so that you will know the backdrop for some of what I am going to share next. Each person’s faith is developed not only through study and worship and discussion but through these types of life experiences that color the way we understand ourselves, others and God. I don’t claim to have any more answers now than I did six months ago about the complexity of our Creator, but I do feel like I have personally deepened and changed some of how I view our calling and relationship to Him. Here are a few of those things:
1) I believe that God is good. I believe that God is our Creator and Sustainer and that he is intimately involved in putting each of us together. One of the scriptures that we have found ourselves returning to during this time is the Psalm that says, “You were knitted together in your mother’s womb.” I believe that God is actively forming Clara and that he wants her to be healthy and whole as much as we do.
2) I believe that we have no way of understanding why bad things happen. Clara has certainly not deserved this, and I’d like to think we didn’t either. Bad things happen to people. I do not believe that “it is for a reason” or that “it is part of God’s plan.” I think bad things just sometimes happen. I do believe that God is the one who is carrying us through this and that he has used this experience to teach us a lot and to draw us closer to him. I believe that the many people who are praying for us have also experienced some of God’s grace through this. But I don’t think that’s why it happened. I think sometimes we just get dealt a blow and it’s hard. God is there for us, but I don’t think He caused this or wanted it.
3) I believe that we are designed for community. I cannot imagine facing what we have faced in the past few months in isolation. One of the greatest gifts that God has given to us is a large and powerful community. Our church family, our work colleagues and our friends and extended families have supported us and cared for us in ways that I never knew were possible. The community is even bigger than that though. We have been reached out to by strangers who have been impacted by CDH in their own lives and want to offer their love, by friends of friends of friends who have heard our story and been moved to pray for us, by churches and monasteries across the country who have assured us through cards and letters of encouragement that they are praying for us. During the “difficult week,” as we sometimes now describe that Tuesday through Friday when our future was totally unknown, we had a friend tell us that someone we have never even met before was fasting for us as an expression of her love and prayer. That is powerful. I have learned better how to respond to others who are in crisis too. Sometimes people say the “wrong things,” but we have learned to hear their intentions behind it instead of being hurt by the words that are spoken. It’s okay if people don’t know what to say at all. We’ve gotten some cards that say something like, “I don’t have any words for you, but I just wanted you to know that I love you and you are in my prayers.” That’s enough. We, as God’s community, do not have to have the right words to say, or any words at all. But letting people know that you care for them is a tangible expression of God’s love for us and carries sustaining and renewing power. I have faced health crisis before (some of you remember the tumor that was removed from my parotid glad when I was 19), but I have never felt the presence of God’s family on earth as deeply and complexly as I have during the past few months. It is a beautiful thing and I am really grateful that God designed us to be in community with one another in such a powerful way. It is a gift that I hope we never take for granted.
4) I believe in prayer. I’ve always believed in prayer, but I have never prayed as fervently as I have the past few months. I have never been as broken, or cried out to God through tears just pleading for something with all that I have. That may not be pretty, but it is both humbling and empowering to completely and totally throw yourself at the mercy of your God. I’ve always heard Paul’s words, “pray without ceasing” and thought that meant to just keep praying. But I’ve learned in the last few months what it really means to pray without ceasing. I feel like I carry my prayers for Clara around in every breath I take all day long. I am never not thinking about her. I am never removed from her. I feel like God and I are just holding hands and walking through my “normal” life while I am constantly whispering in his ear my petition for my child. I’ve also learned about the many different forms that prayer can take. I wrote on my blog a few weeks ago about prayer imaging and how powerful it has been for me when I am at a loss for words to just share with my Creator an image I have for prayer. Many friends have also shared their prayer images for Clara and that collective thought has been a moving testament for me. I know that people have fasted for us. I know that people have added us to countless prayer lists and chains. I know that people have made Clara part of their daily devotion and prayer time. I know that people have lit candles for us and made donations in our honor and eaten the Lord’s Supper and hundreds of other expressions of love, care and concern. Those are all prayers. We have really, really felt those prayers. It is undeniable to me that they are being heard and that they are being answered. What an incredible gift from our Father that He allows us to communicate so directly and personally with him. I am grateful for prayer.
5) I believe in miracles. When we were told that the doctors did not think Clara would live we were devastated. People immediately surrounded us with an incredible cloud of prayers. When we found out a few days later that she had a fighting chance, we felt like our world had been turned right side up again. I believe that what we experienced was a miracle. We continue to feel that we are experiencing many miracles – big and small – through this journey. We still need big miracles. We are asking for a miracle when we ask God to cure our child. But more than ever before I believe in them. I don’t think miracles were just something that happened with mud and spit or fishing nets thousands of years ago. I believe that our God is still in the miracle business and that he uses people in this world to allow miracles to happen. I’m not just asking for a miracle; I believe that it can happen. To God be the glory.
6) God’s hope, and the offer to trust in Him instead of ourselves, is a huge blessing and relieves an unbearable burden. I have had moments in the last few months where I am panicked and when I am filled with fear and anxiety and sadness. I think that’s all perfectly normal and probably even healthy. But overall since November, Robert and I have experienced a great peace. We are so hopeful about Clara’s future and it is a hope that I believe is not centered in naïveté or denial, but in God’s calming peace. There is absolutely nothing I can do for my daughter. I cannot change her condition or take any medication or eat a certain food or get enough sleep to fix this for her. Not even the doctors, as skilled and talented as they are have the ability to truly cure her. All they can do is provide support, perform surgery, and create conditions that could lead to healing. There is only one Healer and He’s the one who made you and me and Clara. In recognizing that this is totally out of my power and control and totally in the power and control of the One who can do something about it, I find a great relief. Typically, I am a problem solver. I am a fixer. I am one who wants to make things right and will take the steps to make that happen. In my faith, I often struggle to hand things over to God and give up control myself. It’s been easier than usual with this because I see no other way. I can’t fix her, so why would I want to try? I want the One who can to have her completely. So daily, hourly, minutely, I hand her over to God and trust in Him to take care of her. The peace he gives in return is a great blessing.
There’s more. There are probably hundreds of little lessons here and there that I have taken away from this experience. But I hope that in sharing a few with you this morning that you have been encouraged or reminded of something relevant to your own lives as followers of Christ. This has been the first chapter of this story. In 35 days, on March 23, we will induce labor and Clara will be born, a child of God. Chapter Two will begin then as we all stand by her and encourage her to fight for her life. I’m sure a whole new set of lessons will be learned then. But I hope I will carry these with me.
We thank you for your prayers. We are not able to respond to every single phone call, email, letter, or card that we receive, but each one touches us deeply and encourages and sustains us more than you can imagine. We appreciate your continued prayers in the weeks and months ahead and ask you to join us in asking for and expecting miracles. We serve a mighty God. May all the Glory be His.
