Risky Business... What exactly is faith?

Recently I had a couple of different friends approach me about a shower for Vivien. At first I was hesitant, knowing that , after 3 girls, I certainly didn't have a lot of needs from a practical standpoint as far as baby things and clothes. I was also hesitant because truly we don’t know for sure if Vivien will even make it home from the hospital. But my friend insisted that she wanted to be able to celebrate Vivien and so I agreed. We want to plan for her life, not just her death so we moved forward. The girls from my community group at church are planning on a shower for me as well. Once again I feel so incredibly loved and supported by family and friends.

So a few days ago I got to experience a lovely shower with close friends and family. My friends truly blessed me with food, fellowship, prayer, gifts and beauty. They gave me a book with prayer and Scripture for Vivien as well as sweet preemie clothes and gifts. These are women I have known for many years and whose kids have grown up with mine.

One of the sweetest parts was the prayer time. Maggie sat beside me, and as soon as everyone started praying, she began to cry softly into my chest, thinking about the possibility of Vivien dying and really struggling. I love that we are surrounded by friends who love Jesus, and whose children love him too. Their daughters prayed for Maggie with tears, praying for her comfort, and help and peace. There was not a dry eye in the room. I left feeling incredibly blessed and supported not only for myself, but for my girls as well. I love that Maggie has these beautiful lifelong friendships, most of whom she has known since infancy.

That evening though, I had a couple of very strong emotional responses to the day that surprised and actually confused me. First of all, I felt overwhelmed with a deep sense of grief and sorrow. The peace that God has brought hasn’t been manufactured, but real and most of the time I am able to move forward with trust and optimism. It felt odd, that after such a beautiful time, with so much support from friends, that I would feel this way.

The second feeling I was experiencing was also confusing to me. I felt for some reason, incredibly vulnerable. Like I’d been stripped bare and naked in front of a crowd. It was almost a sense of shame. I felt so incredibly open to disappointment and a bit foolish.

Right away I took this to God and began to ask Him what in the world was going on. Why was I feeling this way? It didn’t make any sense after such an amazing day filled with so much love and support from family and friends. When I ask Jesus questions I truly expect to experience answers, both for what I see in my life and my friends’ lives, especially then they make no sense to me.

He didn't disappoint, and the first answer came almost immediately. One of my close friends who had been at the shower had given me a book several months ago called “Beautiful Battlefields” by Bo Stern. She speaks of the fight of faith, and how we will all encounter battlefields. Her husband had been given a terminal diagnosis with ALS or Lou Gehrig’s disease. I was reading it like I pretty much read all books, - propped up on the back of the sink. I never sit down and read a book, but I multitask while doing my hair or getting ready for the day or night. It may take a couple of months, but I go through many books this way. I was praying as I was brushing my teeth and asking Him for an answer, my eyes rested on the book and I began to read. The author made the point that sorrow and loss are often mixed with joy. She writes, “These moments of pure joy must be lived fully because they are the oil that softens the suffering. Joy that shows up in the head of battle is one of the most beautiful things I have ever known. I’m so glad I stopped believing it was impossible. “

At the beginning I felt like Vivien’s diagnosis was all grief, but then God changed my perspective to joy and most of the time, I do feel peace. I can laugh and have these “moments of joy” as she talks about. But then there are the times like this evening, when again I am overwhelmed by grief. The author spoke of this as completely normal, this mixture of joy and sorrow. She writes, “The idea of letting in some real, true joy began warming my sad heart like sunlight streaming through an open window on a winter’s day. I started to embrace the happy moments for what they could bring into my life without letting the sad moments steal away their beauty. At first I almost felt guilty, like the little kid who laughs inappropriately at a funeral. But as I pointed out earlier, I am discovering through the Word and through experience that joy and sorrow are not mutually exclusive emotions. Both are hidden treasures found on the battlefield. I used to think that sorrow eradicated all joy… The Bible however, does not support this idea. Instead it insists that joy and sorrow can comingle in ovely ways, bringing balance to life and hope to our healing.”

It was no surprise to God that after a day of joy, I should experience some waves of grief at the same time. This is ok, this is normal and I felt His assurance to let myself feel it, trusting Him with both the grateful happiness I’d felt earlier and the sorrow I was feeling at that moment. Vivien’s diagnosis is not “good”, it is not joyful or happy and it is ok and right to sorrow over this.

While we know that God works all things together for good, we need to be careful to not call something “good” that God doesn’t declare good. Sin and sickness have always been part of the curse. Vivien’s condition is not “good” but I can trust God that He is going to redeem what is not good. (Rom 8:28) I can thank God, not that Vivien has T-18 necessarily, but for the good that He is going to do through this. I’m glad that we are to give thanks in all circumstances, but we don’t have to be thankful for all things (I Thess 5:18). We have the ability to give thanks in all circumstances simply because of the amazing and beautiful character of our good God. Our thankfulness has to do with what He is going to do in us, or in our circumstances and how He is going to redeem one, the other or both. We don’t have to be thankful for what is evil or call it “good” or a “blessing”. (Is 5:20) Matthew 5 talks about how we are blessed (or happy) when things like poverty of spirit, mourning, want, and persecution come. Jesus doesn’t call these blessings, but He does say that the result of these things is blessing for us.

We sometimes see evil as coming from God and confuse this with His sovereignty. The enemy of our souls comes to steal, kill and destroy (Jn 10:10) – but for those who love God, He works it out for our good and truly gives us life. If God allows evil in our life, He will work things together for good. We can trust Him in this. This is faith – both in His character and in His ability to redeem all things.  The emotions and grief I was feeling are a part of my journey. Joy and grief will come together and it is ok to experience both with Jesus.

With the second emotion - the sense of vulnerability and shame, which was truly the most confusing to me - I kept asking.  The more I thought about it the more I felt like the Holy Spirit spoke to me about faith. Todd and I want to be realistic about the possibility that Vivien could pass away even before she is born. We have heard many stories of those whose babies with T-18 pass away in the final weeks of pregnancy. Todd has even visited a funeral home just to be prepared. While we know all this is true, both Todd and I have had a sense that she will make it past birth. My mother has felt the same thing. Sometimes I almost forget that her death in the womb is still a possibility, because I see her as living through birth. I truly don’t know if this is faith from God, or just a feeling we have all had, but there is sort of an expectation that she will live for a while. We are not sure exactly what that “while” is, but we want to plan for her life, not just her death and take seriously the long term implications of Vivien surviving and living as a special needs child.

But for some reason, after the shower I had the fleeting thought. “What if she dies before she is even born? I have all these gifts and support from friends and it would just be so weird. I would feel so foolish.” Even though intellectually, I know that my friends would understand, would not think I was presumptuous to have had the shower, for some reason, the shower itself made the future – whatever it is – more real to me and the sense of shame and vulnerability felt so strong.

As I was thinking about this, I asked Jesus if we were being presumptuous in this expectation that Vivien is going to live. In the past I have thought and philosophized and prayed so much about both the seeming tension between Sovereignty of God in a person’s life, and the exercise of faith – not just about God, but faith in Him actually doing good things in the future. About praying and asking for specific things in faith, not just a general faith in God. But it is no longer just philosophizing about what God does in other people’s lives. This hits home. My faith and trust in God is strong, but to have faith that Vivien will live is much more risky. To actually hope is scary. And what does it look like to truly have faith for Vivien to live, while at the same time, holding her with an open hand to God, saying “we trust You” whether she lives or is healed or not?

He brought me back to the definition of faith found in Hebrews 11:1 “Now faith is the assurance of things hoped for, the conviction of things not seen.” That word “hope” by implication has to mean something good. You don’t hope for something that is bad. The very essence of hope is something that you want or wish for. And faith takes hope a step further. It is the assurance of what you hope for. For me, it is much less risky to say that I know that God is in control whether she lives or dies, than to actually move forward with the expectation that Vivien will live. And even if that expectation is in my head and heart, it is another thing to actually let my friends buy her gifts, clothes, a new baby monitor etc. The sense of vulnerability I was feeling, I realized, came from the thought that maybe it is somehow wrong or foolish to have this expectation that she will live, or to plan and move forward practically in that direction, even going so far as to receive this from my friends.

In addition to this, several years ago, God spoke to me about the concept of receiving. Both giving and receiving are important. Giving is better, but we need to receive both from God and others, in order to give. Sometimes being the giver feels safer and less vulnerable than receiving. I can serve and love others, but receiving can at times, be humbling because it shows that you actually need something, rather than just being the strong one. Yet receiving needs to be a part of our lives. I had received much that afternoon, and while yes, I was incredibly grateful, it was also humbling and vulnerable to receive so much.

The more I talked with God about these emotions, the more I felt like God was speaking to me again through Heb 11 that while I can trust Him and hold Vivien with an open hand, it is actually an exercise of faith to plan for her life. He was bringing me back to celebrating, expecting and hoping and having faith for LIFE for Vivien rather than death. It is not wrong to believe this way. It is wrong to be presumptive or to try to manipulate Him, but as long as my hand is open, I can have faith for her to live without needing to feel ashamed or foolish. I felt like He was saying “it is good to hope and believe and have faith for life for her.” Regardless of what happens, I need to have that expectation and belief, whether I end up looking or feeling foolish or not.

I am so grateful that whether I am feeling joy or sorrow, whether I am struggling with the risks of faith, or standing strong in trusting Jesus regardless of how foolish I may feel– He is right there, willing to answer and speak truth and love me through it. I love that He is encouraging me once again, in faith and in believing and celebrating Vivien’s life, both in and out of the womb.

Interview About Vivien on Christianity Today's Womens Blog

My friend Celeste Gracey interviewed me for Christianity Today's Women's blog.  So grateful that Jesus is using Vivien's story to show his love for ALL life and for special needs kids.  Be sure to read all three pages and feel free to share it with others!
Click on this link: Christianity Today - Her-meneutics

Well I didn't expect to hear that.... When the Holy Spirit speaks

A few weeks ago, I had the privilege of listening to one of my favorite authors and speakers, Lisa Bevere. I went to a conference a few years ago and there, God spoke to my heart to make her a mentor in my life, to listen to her, read her books and learn from her. I took Him seriously and have followed her over the years. Although there are some “open handed” doctrinal differences from the church we attend now, God has always used her to speak into my life at exactly the right time and blessed me through her teaching.

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He has also done something special with regard to each one of my girls. The first time I heard Lisa, God spoke to me quite a bit specifically about Maggie, and how to love and parent her well, in some very practical ways.

In addition to this, at that conference, I stood for prayer and Lisa came down into the audience (of about 500 or so at the time) and laid hands on my stomach and prayed for me. She had no idea that I’d had a miscarriage a few months before, or that exactly one year from the day she prayed for me, laying her hands on my womb, I would go into labor with Lucie. The conference was on “Nurture” and I knew that God’s hand was in the timing, especially when all of my babies came early but Lucie was 9 days late. Coincidence? No. Just Jesus.

When I was pregnant with Iva, God showed His sense of humor. Todd and I had decided on her first name, but not a middle name. Since God had used Lisa as a mentor in many ways in my life, I told Todd I was interested in finding out Lisa’s middle name to see if it would work for Iva’s middle name. Todd hesitated, telling me that he wanted it to be a “J” name with one syllable like Maggie June and Lucie Joy. You can imagine my surprise and delight when I found out that Lisa’s middle name was “Jo” (coincidence again?) and asked Todd about it without telling him (at first) that it was Lisa’s middle name. He went for it and we loved the meaning behind it – Jehovah increases. Thus, Iva Jo was christened.

So you can imagine that after finding out about Vivien, I was looking forward with some expectancy to hearing what God had to say through Lisa when I found out that she was speaking up in Arlington a few weeks ago.

First of all, Lisa talked about how we are entering a season as believers, where we need to ask Jesus questions about things that we don’t know anything about. She talked about needing the Holy Spirit’s direction like we never have before. We don’t know what is in store, but we do know that the Holy Spirit has the answers and that when we ask for wisdom, God will give it to us (Jas 1:5). This spoke to me about Vivien and all of the medical needs she will have that we truly know nothing about. We can research and study, we can ask doctors, but Jesus knows her little body more than we do and we can trust Him to reveal to us what needs to happen.

It’s funny how Holy Spirit doesn’t always work in ways we expect, and while I did expect to hear from Him about Vivien, it was a little different than I thought. It is hard for me to put into words in a way that won’t be misunderstood, but I will do my best. The Holy Spirit spoke to me to be careful to not make my life consumed by the difficulties, and work of Vivien’s care but instead to make her a part of our family life and the community and ministry we already have. I know that it is going to take an astounding amount of work to find a new normal if Vivien lives. I also know that at the beginning it will probably be an all-consuming task and that our life will be put on hold for a little while. And while we are definitely planning to focus on her care, I could see how it would be easy to become consumed in the tasks of caring for Vivien in a way that is unhealthy.

I felt like the Holy Spirit spoke to me that there was danger in defining our family and life by Vivien’s handicaps, instead of bringing her into our family and community, letting her be loved and cared for and a part of who we already are. I could see how my heart could be so wrapped up in her that I don’t make my other children, my husband or my community a priority. I could see how that would look almost noble and right – and yet, it would not be. I could also see how fear of missing something medically, or doing something wrong might make me crazy. It could make me feel like if I let go of control for a minute, something terrible might happen. Fear could connect me to Vivien in an unhealthy way. It could also define our family’s life. It would be easy to withdraw and become completely focused on our own family and almost use Vivien as an excuse to not be involved in life and ministry and community. I understand that my family and Vivien are a part of ministry. Loving and serving my family and Vivien are of course a way that I minister, but I could see how my focus could become myopic where Vivien and our family could become all I see instead of having a broader vision.

I started asking Jesus what this would look like practically - to still follow His calling and ministry in community and care for Vivien well at the same time. How could we practically care for her medically doing all we can to support her life, being vigilant to be her advocate – while at the same time not making her care be borderline idolatrous and all consuming?

After going to the conference I wrote in my journal. “Lord – I am just asking You for supernatural help to love her well and in balance and in a right way, where You are first, where I don’t grasp for control, don’t live in fear, while at the same time, am not lazy or irresponsible.”

Both Todd and I have been very involved in community, leading Bible Studies and serving at our church. We love that this is part of our purpose and calling. While we know that our time with Vivien could be very short, we also know that we need to look at possible years of long term, involved care for Vivien. In thinking about this, both of us have been asking God what ministry and service look like. We have always had a burning desire to be used by God for His work and glory. Our time and our life is not our own. If we are supposed to take good care of Vivien how does that work? Since this has all happened, does ministry and service outside of our family become impossible?

In hearing the Holy Spirit say to still be involved in community and ministry, I felt a bit overwhelmed. I sometimes feel like life is already exhausting enough. Thinking about caring for Vivien, while still being engaged outside of our family just felt like a huge mountain to climb. Even as I asked this, I felt like Jesus spoke to my heart that if He is asking us to do this, He will give us the grace to do it still and ensure that she is well cared for. He loves her more than we do, and if we listen to Him, we will not neglect her. Since then He reminded me of a verse that He gave me years ago. Deut 30:11 “For this commandment that I command you today is not too difficult for you, nor is it out of reach.” What Jesus asks us to do will not be too difficult. His yoke is easy and that His burden is light (Mt 11:30). It is truly possible in the right way, to be absolutely committed to Vivien, while still being able to serve others well.

As Lisa spoke, she talked about how what seems like opposition (from the enemy) God actually turns around and begins to use in our life for His glory. Yes, Vivien’s 3rd chromosome was not God’s original plan because sin came into the world and the curse appeared. But again, Jesus has redeemed us from the curse. I actually began to see how Jesus can use what happens in Vivien’s life to glorify Himself by, matching it with our purpose and calling in ministering and serving others. How amazing is that that Jesus can make beautiful and redeem what the enemy means for evil? We will get to enjoy her and love her and STILL carry out His plan in by blessing other people with our journey. What an incredible tapestry Jesus weaves for us. I felt like I caught a vision for what He could do through Vivien’s life, no matter how long or short. I’ve even wondered if this blog will be a small part of putting that together. Wondered if all of you who are reading it will join us on our journey and be ministered to, in the same way we are being ministered to by Jesus.

Jesus confirmed what He had spoken through a couple of ways. First of all, I did get to have a chance to talk with Lisa while there. She was so sweet when she heard my story. She spent time talking with me, praying for Vivien and for Todd and for our ministry together. When I told her what Jesus was impressing on me about serving Him and others well while still caring for Vivien and how I was a bit overwhelmed and scared about what that would look like and the work it would take, her confident response was, “It will be organic.” I loved how she put it and felt so encouraged that He is going to use Vivien’s life to glorify Himself while loving and caring for her through us. Ministry will include Vivien, our family and others in a way that He will naturally blend together.

The second way was through Todd. When I went home and told him some of the things that the Holy Spirit was saying to me, he told me that God had been telling him the same thing. He had been convicting him about sometimes thinking, “With all that we are going through, it’s OK to pull back from others and from caring well for them.” We both understand that our life is going to look very different, and that especially at the beginning we may need to cut some things out and find our new normal. But it doesn't mean that we cannot be involved in family, in community and in doing life and ministry together, loving and serving those around us and caring for our children in a balanced way as well.

Both of us felt like Jesus was showing us how He can be glorified, and we can still have joy in loving and serving Vivien well, while at the same time being fully involved in the calling and purpose He has for us. It was a powerful reminder that He is in control and that he is already planning and infusing Vivien’s life with the life we already have – in a way that will be organic and beautiful.

I wasn’t expecting to hear this from the Holy Spirit. I thought it would be more specifically about Vivien’s care, or maybe even more of how He wants me to deal with everything spiritually and emotionally – not necessarily about ministry. But I love that He spoke. There is nothing quite like hearing from the Holy Spirit and then knowing that He will empower us to follow His leading in what He says. I am so grateful that He continues to speak to both Todd and I on this journey.

Prayer List for Vivien

This is a long and detailed list, but feel free to pray only 

what is highlighted, or a small amount each day.

1. Praise Jesus that He has given us a perspective not just of grief, but one of LIFE. Vivien’s name means “alive” or “life”. Praise Him with us that we can celebrate Vivien’s life, no matter how long she lives.

2. We ask Jesus for complete and miraculous healing of Vivien,
We pray for her to be healthy, well and whole - body, soul and spirit. We submit to God’s will, whatever He has for her, but we do want to ask in faith for healing.

3. Pray for protection for Molly from pregnancy complications.
Preeclampsia, high blood pressure and excessive amniotic fluid are all fairly common in T 18 mothers. Pray that Molly will continue to have a healthy pregnancy.

4. We ask for a healthy delivery with no complications and for Vivien to be born alive and breathing well.
At this point we have decided to go into labor naturally, and proceed with a natural birth, while at the same time asking for the doctors not to hesitate to do a C-section if she shows any kind of distress. Please pray that if we need to do an elective C-section, God will show us. Sometimes contractions can be too much for babies with T-18 and we need wisdom in this decision. Pray also that she would not be born early to give her the best chance.  The perfect scenario would be a natural delivery but we are open to whatever Vivien needs.

5. Pray that any complications from T-18 in her body will be unusually minor. Pray that the current VSD (hole in her heart) will close on its own and her overriding aorta will be healed.
There are a multitude of complications common to babies with T-18. As of now we know she does have a hole in her heart along with an overriding aorta. It is possible for this to close on its own. Pray specifically that all of her organs – her lungs, liver, stomach heart etc. will all be in good working order. Pray for a good birth weight.

6. Pray that we will get doctors, nurses and health professionals who will be completely up front with us about all her physical issues, her treatment and that they will be supportive of our choices.
It is common for many in the medical profession to call babies with T-18 untreatable. The group of doctors we are going with at Swedish have told us that they believe in minimizing treatment for babies with T-18 but they are willing to work with us and treat her according to our wishes. They have been open to our requests for more aggressive care for Vivien (as opposed to comfort care) and have been very supportive. Pray that those who have Vivien under their care will be willing to treat her in the ways that we ask and that we will fully understand what needs to be done to support her life.

7. Pray that we would reach out and work well with all that we come into contact with in the medical profession.
We would love to be a witness to all that work with Vivien. Pray that we would be given many who share our desire to support Vivien’s life. Pray that we would have loving, patient hearts toward any who do not have the same philosophy of supporting her life and that we would be wise in how we get along with them, reaching out to them while standing strong in doing all we can to help fight for Vivien’s care.

8. Pray that we would not be led by fear when it comes to making life or death decisions with Vivien, but that we would be led by the Holy Spirit.
Pray that we would take responsibility, but at the same time, know that the result is up to Jesus and not feel a heavy burden that it is all on us. Pray that we would just be obedient and leave the results in His hands.

9. Pray for wisdom right after she is born, to know what tests to have her undergo, that any issues will come to light and be revealed and not be found out after the fact.
Pray that Vivien would be strong. Pray that we will have wisdom as we ask the Holy Spirit to show us and the doctors what she needs. Medicine is truly a “practice” not a sure thing and we want to fully understand Vivien’s needs. Pray against errors in diagnosis and treatment. If surgery is required, pray for wisdom to know if it is best for her little body, if she is strong enough to make it through surgery and how to go about this. Pray that the doctors would give wise counsel.

10. Pray for strength, stamina and joy in the days following her birth.
If there is an extended hospital stay, pray that we will be able to get the rest we need while caring for Vivien well. Praise Jesus for all of the loving family and friends who we know are ready to support us. Pray for their stamina and joy as well. Pray for the Grandparents who will be involved with caring for our kids as we care for Vivien. Pray for joy and strength for them.

11. Pray that Vivien would be able to nurse and eat well.
It is very unusual for a baby with T-18 to nurse. If she is not able to do that, pray that pumping would go well and that we would be able to give her the best nutrition possible, whether through breastfeeding, bottle or feeding tube.

12. Pray for our children. Pray for their emotional and spiritual health as they deal with what is to come.
Pray that they would have an unusual, supernatural peace from Jesus as their life may change drastically for a time. Pray for joy for them. Pray that they would feel loved by us and not neglected. Pray that we would have wisdom if we need to divide our time between home and the hospital and the details of how to go about this.

13. Pray against infection, colds, sicknesses etc. in us, in our children, in the Grandparents and all involved in Vivien’s care.
No one can go into the NICU with sickness. Pray this especially for our kids who often catch cold.

14. Pray that God would continue to bless us financially when it comes to medical bills.
So far we have had some big bills, but have very good insurance that covers most of the costs. Praise God with us for good insurance and pray that we would continue to have good coverage. We have spent some hours already on the phone with providers and the insurance company but so far have had fairly good results. Pray that there would continue to be no complications or problems with claims.

15. Pray that we would eventually be able to bring Vivien home and that she will live long.
If she dies prematurely, pray that we would see Jesus in her life and that we would even see some joy in her before she goes. This has been a specific prayer of Todd’s. He wants to see joy in Vivian. If she does live long, pray that she would not suffer greatly and that we would be alert and wise to understanding her needs.

16. Pray for unity for our marriage and unity as we make decisions about Vivien’s care.
Pray that if she lives long enough to make significant decisions about surgery and more aggressive treatment that we would hear from the Holy Spirit together and see eye-to-eye on the decisions that need to be made.

17. Pray that if Vivien does live a long time, that we will have strength and stamina to give her the care she needs, that we would not live in fear and that our house would be permeated by peace and joy.

Is 66:9-10 Shall I bring to the point of birth and not cause to bring forth?” says the Lord;“shall I, who cause to bring forth, shut the womb?” says your God. “Rejoice with Jerusalem, and be glad for her, all you who love her; rejoice with her in joy, all you who mourn over her;

Deut 30:19b-20a Now choose life, so that you and your children may live and that you may love the LORD your God, listen to his voice, and hold fast to him. For the LORD is your life…