The Unshakable Foundation

 

6 years ago we found out that Luelle was a beautiful little girl that had spina bifida. We had a lot of unknowns ahead of us. Many things that I thought I could hold onto were shaken. The year that followed tested us in many ways. As our world seemed to crumble, what sustained us was the one thing that remained unshaken.

I’m so thankful that God cleared the rumble in my soul and took away things that I had leaned on that I never should have. The process of letting go was painful. God loves us enough to chisel away things that ultimately will leave us wanting.

Through the years I had unknowingly started to believe that peace in life comes from health, people, and an easy life. I had started to look to these things for answers, confidence, and stability. When these things were not a given anymore it terrified me, but it also emptied me. This emptying helped me question where peace, stability, and meaning truly come from. It’s not my health, an easy life, or the people around me. It’s Christ and Christ alone.

What incredible joy, peace, and hope I have found in Jesus. Letting him be the only thing I cling to allows me to endure the pain and struggle in this life without terror and hopelessness. Because when health, people, or my circumstances fail me, God alone remains.

Once we find the Source of hope and life we can face whatever the future holds, no matter how painful. This verse comes to mind.

 ^“I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength.” Philippians 4:12-13

The secret is Christ, finding our hope in Him alone. No person, amount of money, physical health, skill, or personal fortitude can bring us lasting joy, hope, and strength. Life reveals this as we go through hardships. When trials come, we will see these things fail us. I’ve seen my hope in the wrong things fail me. I pray that as I continue this journey, I will fight hard to not allow my confidence or hope to ever be in anything but Jesus. Every day I must choose to not let my gaze stray. Sometimes I start to feel confident in my own skills, in my possessions, in my relationships. These things are good and gifts to be enjoyed but not my foundation or hope.

Luelle, our beautiful light, you are such a gift. Your scars, our scars, are such beautiful reminders of the Hope that will never fail us. No matter what tomorrow brings, the Lord is will us and will never leave us.

Above all else, this is what Bobby and I pray for Chale and Lu. As they grow up in a world that clings to countless false foundations, we pray that they would hold fast to Jesus and know His perfect peace.

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From Ugliness to Beauty

4 years ago today, Luelle and I had fetal surgery. Most of you have probably seen me post about this or things related to this often. Our life took a different course 4 years ago with Lu’s spina bifida diagnosis. Initially, it was a course we saw only hardships on. As the years have passed, I realize how much that course has impacted us in ways far beyond fetal surgery and spina bifida.

Honestly, I’m a different person now. Four years ago I thought I had many things in life, faith, and our future figured out. I felt confident in most things and understood God in a way that I was comfortable with.

We went through a season of intense pain, fear, lack of control, a future very unknown, much isolation because of being away from our family and community, and a time of sequestering myself because of feeling so overwhelmed. I experienced a season of PTSD after we returned home. I had near panic attacks and would break down weeping when something randomly triggered a memory. For awhile I didn’t know how to talk to people about what we had been through. It was so much more than fetal surgery. For awhile I felt bitter towards God for all we had experienced.

We saw children die from cancer, premature birth, and other complications. We began deep friendships with families we lived with at Ronald McDonald that are a category of community I have never known before. Our future was impacted and directed in many ways because of what we’d seen and who we’d become. I view the world differently now. I try to look at people and know they have stories and likely deep pains that aren’t seen because I’ve tasted that. I remember buying the first little piece of girl clothing and crying in the store because I didn’t know if she’d live to wear it. I probably just looked like a hormonal, pregnant women but there was so much going on underneath.

I am more confident and less at the same time. I care far less if I’m understood or what others think of me, yet I also realize there is so much I don’t know about people, the world, and God. I guess I’m less confident in myself and desperately confident in the Lord.

Going through something that pushed me to the limit in every way, revealed more about who I am. I’m probably more of a friendly introvert that has lived as an extrovert for years. I have a small plate, meaning my capacity for relationships, activities, commitments, and people is not vast. I like having fewer friends that I go deep with. I’m not a great multi-tasker. I like focusing on one thing, doing it full force, and completing it. I am the opposite of a procrastinator, I hate having things hanging. I am an outward processor, getting my thoughts out in words or in writing is really important for me.

Grief is something I’ve experienced more now because of having to let go of certain dreams, abilities, expectations, and plans. I’ve walked through grief with dear friends who’ve lost children, health, spouses etc. I feel honored and humbled to weep with others and simply be with them in their grief. I used to feel very uncomfortable with deeply hurting people. Now I actually feel more comfortable with hurting people and sometimes unsure of how to be with people in the mundane. This is quite frustrating at times. I don’t want to be insensitive, awkward, or a downer but often I feel this way. I think I’ve lived in heavy things enough that I have to relearn the light and normal.

Speaking the truth all the time is so important to me now and wasn’t as much before. Saying “no” when I don’t want to do something or when someone offers something that really isn’t helpful. Telling others and God the truth about what I’m feeling. If I feel angry and bitter, I tell that to God. I don’t try to say only what sounds nice. Telling myself the truth about myself, meaning that I try to be honest and acknowledge what’s true and dismiss things that aren’t true. I may feel like a bad mom but I’m not. I try to be attentive to when my heart and actions aren’t aligned. I might feel responsible for how someone reacts, but I’m responsible for how I react, I can’t control others reactions. Perhaps this is why I struggle with small talk now, because if you ask “how are you?” I don’t want to say “good” if I’m not but our culture doesn’t really know how to handle that.

Speaking the truth is important to me because I have realized the freedom in living this way. I don’t carry around this guilt anymore. When I was in survival mode the past few years, I didn’t have the capacity to not be honest with people. If I was too fragile to spend time with people I had to tell them I don’t want to be around people right now. If someone offered to help I started to actually tell them “thank you, can you bring me a meal, or help me clean my house, or watch my kids” instead of just saying “thanks I’m okay”. I try to parent with this mindset. I try to always tell my kids the truth and teach them to always tell the truth. It’s so much more than wanting honesty when you ask “did you break that”. I ask them why they respond certain ways. I tell them when I am wrong and react wrongly. I tell them when I’m in pain, angry, tired and when I simply don’t know. I try to tell them the truth about God and the world in a way they can understand but sometimes it frustrates them. I don’t dumb it down and fit it in a neat, little, inaccurate box. I spent a lot of time tearing down the comfortable, inaccurate box I had put around God. I know that I can’t fully grasp who God is but I know He is truth, He is freedom, He is life.

4 years ago I felt numb. I remember seeing only pain, struggle, and ugliness ahead. Today, I see how there’s beauty in the struggle, grace in the pain, and countless gifts in the brokenness. I’m grateful for the physical scars Lu and I have as reminders of this journey. May our scars always share a story of hope and light to others.

From Fear to Faith

Three years ago on October 28th we received Luelle’s diagnosis of Spina Bifida.

I would tell my past self this if I could…

“You are about to experience some of your darkest fears and deepest joys. Facing the fears are what will lead to joy. Don’t try to ignore them or hide them. Face them and hold them. The struggles and fears will break you. It’s painful and scary and at times you’ll want to give up. But in your brokenness you’ll have a choice. You can let yourself stay jagged, angry, and hurt. You can even try to fix yourself but I promise you won’t get very far.

There is another option. With tears, doubts, and hurt you can still choose faith. You can ask God to meet you in your brokenness. It will take time and that’s okay. He is patient. You may feel confused and hurt by your anger and fears. It’s okay, he wants you to tell him exactly how you feel because he already knows. You will question and doubt him, that’s okay because he is faithful even when your faith is weak. At times you will want to turn your back on him. That’s okay, because he will never leave you and will pursue you relentlessly because his love for you is perfect.

Slowly, painfully, with many steps forward and back, you will feel the jagged edges of your brokenness starting to smooth in the Lord’s gentle, loving hands. Your pain will become a new awareness of your need for growth. Your fear will lead to glimpses of hope. Your bitterness will lead you to a greater compassion for others. Your sadness will lead you to experience joy in a ways you couldn’t have before. Your doubts will lead you to cling to what is true not what is comfortable. Your faith will become something so dear to you that you can’t get through a moment without it.

You will look back and be amazed. You will look back on moments that you thought you’d never be able to think about without weeping and somehow you will see goodness intertwined with the pain.”

I wanted to share these words for myself and others. Some of you are experiencing pains and hardships that I can’t even imagine. I ache for you and I pray for God to meet you in your darkest moments as he has met me.

We all desire maturity, compassion, joy, and strength but we have to accept that these things only come through suffering. I hate this sometimes but ease doesn’t make us people of faith.

It’s like a potter molding and shaping a lump of clay. It must be twisted, pushed, and worked before it becomes a vessel with a capacity to hold anything. We need to be broken in order to receive, grow, and be used to bless others.

We all face this choice in our struggles. Do we want to stay broken and angry or do we want to be shaped into something beautiful and new? It’s not just one decision in one moment but a decision again and again that we must make. Every fear, every doubt, every pain, we go once again to God and say “I’m hurting and I need you.” God loves that prayer and promises to be near the broken hearted. He will answer us all uniquely because all of our struggles are unique. Sometimes his answers don’t make sense. Sometimes it feels like he doesn’t hear us. Sometimes his ways seem the opposite of what we need. But all his words are faithful and all his works are kind. ALL of them. I don’t know how but that’s what faith is. Clinging to truth even when it doesn’t make sense. Only in truth can fear be cast out, freedom be had, and love be fully experienced.

Though I will never forget the deep pain and fears I faced 3 years ago, I also will never forget the goodness, abundant mercy, friendships, and miracles big and small along the way.

This sweet girl is such a gift that has changed me deeply and I’m forever grateful for her life.

“In solitude, we come to know the Spirit who has already been given to us. The pains and struggles we encounter in our solitude thus become the way to hope, because our hope is not based on something that will happen after our sufferings are over, but on the real presence of God’s healing Spirit in the midst of these sufferings.

The discipline of solitude allows us gradually to come in touch with this hopeful presence of God in our lives, and to allow us also to taste even now the beginnings of the joy and peace which belong to the new heaven and the new earth.”
– Henri J. M. Nouwen

Standing on Promises

After having a steroid injection in my back this past Friday, I had one day of pain relief. The following day the nerve pain started returning. Bobby and I are discouraged and weary. Since the day we met our life seems to barely settle before another crisis hits. Full of frustrations, questions, and tears I spent some time pouring my heart out to God yesterday morning.

The Lord brought me to the Psalms. As I read through quite a few chapters I couldn’t help but notice the dozens of promises scattered through out.

The Lord is my keeper and helper
Our help is in the name of the Lord who made heaven and earth
Those who trust in the Lord are like Mt. Zion which cannot be moved, it abides forever
Those who sow in tears will reap with shouts of joy
Unless the Lord builds the house those who labor will labor in vain
Blessed is everyone who fears the Lord and walks in his ways
Hope in the Lord for with the Lord there is steadfast love and with him plentiful redemption
The Lord will fulfill his purposes for me; your steadfast love, oh Lord, endures forever
Psalm 121- 137 selections

What struck me as I read through these promises is how they point to God’s unchanging character. It doesn’t always detail the solution the author was seeking. As I read, I felt like God was saying to me “boldly ask me to be who I am, but don’t tell me how to do it”. Instead of telling God how to be merciful, I need to confidently ask Him to be merciful in my life trusting He knows best how to do that.

When Luelle was nine months old were were told because of increasing swelling in her ventricles along with others symptoms, she needed to have brain surgery. We were anxious but knew God was with us each step. Before she could get the surgery she needed a sedated MRI. It was winter and she kept getting sick with fevers and respiratory symptoms. Despite quarantining our family for weeks we had to cancel three MRI’s because every time we scheduled one she ended up getting sick again. We were so frustrated. We prayed fervently for the Lord to be merciful and allow her to be healthy enough to have this MRI so she could get the surgery she needed. I didn’t understand why the Lord would not allow her to get well so she could get the MRI. I felt like He was withholding His mercy which didn’t make sense to me.

After a month of canceled MRI’s, she finally was healthy enough for the test. We met with the neurosurgeon afterwards so we could schedule surgery. We walked into his office and he said he was shocked but that the ventricles in her brain that had been swelling steadily since birth, had not only stabilized but decreased in size. He said she definitely did not need surgery.

I had been asking God to be merciful by making her healthy in order to get the surgery. God revealed His mercy in a different, far greater way by healing her brain so that she didn’t need surgery. I was so humbled as I realized I had never even prayed for that. Instead of just asking God to show us His mercy and trusting Him to, I assumed what His mercy should look like. I struggled much more for faith and peace because I thought I knew how God would work. He was never withholding mercy as I had felt but rather was revealing the depths of His mercy in a far greater way than I imagined.

As I think back on that time it gives me a deeper faith for the future. I want to ask God to work and to reveal His perfect character in situations and trust the timing and the details to Him. I want to be amazed and humbled by God’s hand in my life. I want to live by immovable faith even when the road ahead seems impossible because I know God is trustworthy and will lead us and sustain us. I don’t want what I want but what He wants.

“O Israel, hope in the Lord! For with the Lord there is steadfast love, and with him is plentiful redemption. And he will redeem Israel from all his iniquities.” Psalm 130:7-8 

Breathing

Two years ago we went in for my 18 week ultrasound and I was so caught off guard by what hit us, it took my breath away. We were told our precious daughter had a very severe form of spina bifida and would experience a long list of severe complications.

Most of us have have experienced things that are so overwhelming that you feel like you can barely breathe.

My favorite lecture in all of nursing school was when we discussed that the human body has three types of muscles. We have ones that are voluntary, ones that are involuntary, and ones that are both. We tell our arms to move and our fingers to point because we control their movements. In contrast our heart beats without us every thinking about it and we need not worry about remembering to consciously keep it beating. Our lungs cause us to take in air to breathe without us thinking about it yet we also can take a deep breath if we need to or even hold our breath if we want to. What perfect design and function; the human body amazes me.

When I think about these past two years, in a deeper way than ever before, I was forced to completely depend on the Lord. It was as if I couldn’t take a breath on my own and yet I kept breathing. There have been times in my life I felt confident in my faith and pursued the Lord passionately like taking deep, filling breaths. These past two years I’ve experienced God pursuing, sustaining, and filling me when I had nothing to give in return. There has been much pain, fear, and hardships but joy deeper than I have ever known. The feeling of God filling my spiritual lungs when I could do nothing but keep my eyes on Him is so humbling and beautiful. It has allowed me to experience His power, faithfulness, and love in ways that exploded the small box I had viewed Him in before.

I say this to publicly remind myself and others of a few things.

God loves us, deeply, truly, and unconditionally, so much more than we could ever fathom. Faith is about surrendering our hearts to God because we acknowledge we are in desperate need. We choose to trust God alone. God also meets us where we are and sustains us. Faith is like a voluntary and involuntary muscle. We get to take deep breaths and seek and believe who God is and what He says. God also fills us when we doubt and struggle if we simply keep our eyes on Him.

Whether I like it or not, my faith has been most stretched and impacted through times of pain. When I’m desperate, I look to God and He is able to reveal to me and others more of his power and love through my pain. I’m learning to not fear, get angry, or try to avoid struggles. Instead I try to receive them, come to God, breathe in deeply, invite Him into what I’m experiencing, and ask Him to show me his power and love in this. He will answer those prayers, never how I expect and often in much greater ways than I imagined, but He longs to reveal Himself and loves when we ask Him to.

I feel like I am finally in a season where I am able to take deep breaths again and pursue others and God. I also am much more aware of my need for God to sustain me, to keep my physical and spiritual self breathing. I pray for myself and others to believe and see that God’s love and faithfulness is greater than any struggle we face.

Moving from Fear to Hope

As I look back on things that have happened in my life, my responses are often not what I want them to be. I fight bitterness over things that have felt like more than I can bear. I feel sadness over things that have turned out much differently then I thought they would or should. I carry a sense of mourning over things I’ve lost. I burn with anger thinking about the pain I’ve experienced and watched those I love endure. There is a place of confusion over things that simply don’t make sense to me. Sometimes when I think about the future I’m afraid of the next struggle, the next pain we will endure, the next overwhelming obstacle. Bitterness, sadness, mourning, anger, confusion, fear, what if I stopped there? 

It’s a miserable place and I spend more time there than I would like. To move from there I need to understand something about that place. I create the standards there. If something doesn’t make sense to me it’s bad. If something doesn’t go my way it’s wrong. It may sound positive to define my own standards but the problem is this doesn’t work if I don’t know everything and have selfish, inconsistent motives.

Instead of attempting to create the frameworks I think life should go by, I can look to the one who truly has ultimate power and all knowledge. I believe God is all powerful, all knowing, and perfectly loving. When I let this be the umbrella I view life under my perspective changes dramatically. My pain, loss, emotions, and experiences are just as real and challenging but my responses can be different. Much of the battle for me is accepting that I can be in the midst of hardships and still encompassed by the power and love of God through Jesus. It’s not either or. When things are hard it’s easy to believe the lie that God is not present or loving. The presence of struggle doesn’t mean the absence of God. It may feel true but it’s not. I can choose to believe God is good, faithful, and always with me despite my circumstances being difficult. When I hold Jesus up as the truth I cling to and the basis on which I view everything around me, He becomes an anchor I can depend on. The storm may still rage by I am not trying to control it or explain it. Instead I am holding to Jesus, my anchor, who is in control of the storm and somehow using it for His good purposes and mine.

Believing God is perfectly loving and then looking at things that have happened in my life result in different responses than fear, bitterness, confusion etc. I still feel those things welling up and have to choose to not linger there. As I cling to Jesus, I am able to move from the miserable place of thinking I know best to a place of peace where I believe that God knows best. Often things still are confusing, painful, etc. but there is this almost indescribable feeling of underlying hope knowing God’s ways are best even when I can’t feel it or see it. I hold onto Him without trying to figure out why things happened or what I should do. Sometimes He brings clarity and I see some of the reasons things happened and sometimes I just have to believe He is good when I don’t understand.

I struggle with wanting to hold onto challenging things I’ve been through instead of acknowledging them alongside the goodness of God. I don’t want to stay in a miserable place of fear and bitterness but I have to change my perspective if I want to move to a place of hope.

During time with the Lord this past weekend He spoke these words to my heart and they were exactly what I needed to hear.

“Rest in the promise of my goodness. Praise me in all things knowing I am good and always do good. Hope and expect good things from me even when your circumstances are difficult. Cling to me in the midst of this broken world.”

God has done so many great things in my life. I decided to make a list as a reminder to myself of how great and constant He is in both times of joy and hardship. My faith and perspective ebb and flow. God never changes. One of the beautiful things about reflecting on His great works is that it reminds me he is trustworthy and never wavers as I do.

I pray this also is an encouragement to others to remember how God has moved in their lives in great ways. I pray as we all reflect on God’s hand in our stories that it pushes us to cling to Him as our only unwavering anchor of hope amidst the storms of life.

– I have innumerable, fun memories from childhood growing up with eight sisters and one brother and two loving parents. There were beach vacations, ski trips, backyard adventures, forts, sibling sleepovers, crazy carpools, swimming in our backyard pool, holiday traditions, dress up fun, sharing rooms, bed time stories, family movie nights, epic birthday parties, fun pranks and scheming and so much more.

 

 

– There hasn’t been a single day in my life that I didn’t feel and know I was loved by my parents. I believe they would give their lives for any of us kids and they already have in so many ways. I treasure this knowing many people can’t say that of their parents.

– My grandparents are so dear to me and have loved us in so many big and small ways. I love my Grandma Zena’s delicious spaghetti sauce and Peetie Pie’s jokes and laughter. They took us boating, tubing, fishing , crabbing, and filled our childhood with joy and adventure. Holidays with my Grandma Shirley and Pops were always special. They filled the candy jars that we “weren’t allowed” to eat from and decorated beautifully because they knew we loved looking around the house at everything. They wanted us to have fun and feel special. My grandma makes stockings for each grandchild, spouse, and great grandchild (that’s more stockings than your family has I can almost guarantee it). Grandma Shirley and Pops are some of the most generous people I know and they never make a big deal of giving, they just humbly give. I wish they could see the ripple effect of their impact because it’s greater than they could ever imagine.

 

– I grew up in a church where I heard incredible biblical teaching. Even as a young child I remember hearing my pastor teach and just wanting to soak in every word. Knowing the bible at a young age gave me a solid foundation that impacted my life choices. I had solid friendships that encouraged me deeply for years. All growing up I had many loving adults and leaders pour into me patiently again and again. I loved the worship at our church. I felt like I could meet with the Lord in the midst of the music.

– I had the privilege growing up to travel to many incredible places for short term missions trips. I went to China, Russia, Brazil, the Middl East as well as many different areas of the U.S. These trips broadened my view of the world, changed my perspective on life, and deepened my faith in God.

 

– My family and church encouraged me to seriously considered what I believed, to hold fast to the truth, and to be willing to lovingly share my beliefs with others.

– Experiencing health issues at a young age taught me compassion, gratitude, and to let go of my “rights”.

– Having parents that truly cared about how I lived and what I was exposed to likely preventing me from many mistakes and hurts that I would have otherwise encountered.

– The LIPS ladies, my mom’s prayer group, beautiful exemplifies what it looks like to walk with God in community. Since I was young they have prayed for and loved me, and many others, intentionally and sacrificially and still do to this day.

– Through my life the Lord has provided for my needs financially through my parents, scholarships, my jobs, Bobby, friends, strangers, and gifts straight from the Lord. I can recall so many moments where I had faith (often very little) and God provided for my physical needs exactly when I needed.

– I was able to play soccer and run growing up and loved it. What a gift to have this ability and what a joy I have found in it. Running has been a special outlet for me to process, rest, and feel rejuvenated.

– I have been surrounded by loving, not perfect, Christian community most of my life. I’ve had people to turn to when I’ve needed help in big and small ways.

– I felt called to become a nurse in high school. I loved my science courses and my health issues brought interest in the field and compassion for people. I got into a great program and met some of my best friends at JMU. After school I got a job during a hiring freeze as a pediatric nurse onto a floor I was thrilled to work. I loved the position, my coworkers, and my patients. Strangely, I clearly felt God call me to leave after having back surgeries. It was such a struggle at the time to give up what felt like was my dream but I have such a peace about it now whether or not I return to work.

 

– I didn’t really date until I met Bobby. I could see myself getting wrapped up in relationships and getting hurt or hurting others if I had dated more and am thankful that wasn’t the case.

– Bobby is truly a better man than I could have imagined being with. He is perfect for me in ways I didn’t know I needed. We have so much fun together doing mundane or exciting things. We can talk about the smallest things and the biggest things. Each day we have learned more about loving each other sacrificially and receiving love graciously. He is the greatest blessing I have received from the Lord.

– Our first year of marriage, Bobby and I were mentored by our friends Bruce and Donna. They met with us weekly and helped us understand ourselves, each other, and the Lord in a way that has greatly impacted our faith and our marriage. I think the Lord used that time to build such a strong foundation in our marriage that we would need to endure the great trials of the next few years. They continue to be great friends and mentors to this day.

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– The Lord specifically calling Bobby and I to “set captives free” has changed the course of our lives. It has given us a specific purpose to pursue and has been a compass the Lord has used to guide us.

– I have had a number of times in my life where I was forced to be physical still through pain and surgeries. The Lord met me in the stillness in intimate ways that I wouldn’t have experienced otherwise. In my pain I have become smaller and God has become bigger which has been a humbling, beautiful thing.

– Our children, Chale and Luelle, are such sweet gifts. I loved them the moment I saw them and truly feel I get to know them more each day. The challenges that have come with being parents have been great. But knowing that Bobby and I get to love these two more than any one in the world is such a privilege.

– The Lord has used our experience with fetal surgery to change me in so many ways. I finally feel that I am letting go of being a people pleaser which has been a burden I’ve clung to much of my life. I’m learning to walk with people who are suffering in an understanding way. I felt the lowest I’ve ever felt spiritually and saw God pursue me again and again when I couldn’t pursue him. My view of God has increased, He is greater and more loving than I can comprehend. I’m learning the gifts and sacrifices of being vulnerable about my struggles and victories. I’m learning what it looks like to care for people genuinely and letting God move in them and me as he sees fit instead trying to change others and myself. I am learning to be more honest with people about big and small things. I feel less awkward and more able to speak my mind graciously in relationships.

– I have met people through our time in Philly who have become life long friends and I can’t imagine my life without them. I ache for their struggles and celebrate their victories almost as much as my own. I have learned much from them that I never would have learned on my own.

 

– Because of Luelle, I have entered this sphere of disability that I am learning to understand in a way that I never could have before. I see people differently, I ache for people deeper, and I want to love people that others struggle to love.

– There are many great acts of God around Luelle’s life. Bobby wasn’t going to come with me for my 18 week ultrasound because Chale was sick but we decided last minute he should. The high risk doctor, Dr. Kleeman, who only came to the area we live in once a week, was in the day we had the ultrasound that showed that Lu had a severe form of spina bifida. They thought Lu had Down syndrome, which would have disqualified us from having fetal surgery, but she didn’t. I had never heard of fetal surgery, many doctors don’t know about it and therefore don’t suggest it. Dr. Kleeman knew about it and set the process in motion for us to go to CHOP to be evaluated for fetal surgery. Because Bobby was in seminary and not working full time he was able to be with me during the months in Philly and I would have struggled so much more without him there. The doctors at CHOP said that Lu couldn’t have been in a better position for surgery which is often not the case. I had severe membrane separation at 34 weeks which usually leads to labor quickly but I made it to 36 weeks and 6 days. Lu had a high defect and we were told she may have hydrocephalus and need a shunt, she may be paralyzed from the waist down and not walk, and she may have major bowel and bladder problems. She has no shunt or neuro issues, she has great strength in her legs and is walking well with a walker and will likely not need it eventually, and she has had no bowel or bladder problems. She is a little miracle.

– Bobby and I were clearly called to seminary though it seemed ridiculous to leave great jobs, our families, our house, and our current ministry. The year we prepared for seminary was one of my favorite seasons in life. I heard God clearer than ever before and he encouraged us greatly in specific ways. He miraculously answered every need we had big and small about money, housing, bills, doctors, health issues, renters, and much more.

“As for you, O Lord, you will not restrain your mercy from me; your steadfast love and faithfulness will ever preserve me! …You have multiplied, O Lord my God, your wondrous deeds and your thoughts towards us; none can compare with you! I will proclaim and tell of them, yet they are more than can be told.” Psalm 40:11,5

But this I call to mind and have hope

Last October if someone would have told me what our year was going to be like, I wouldn’t have believed them. There have been so many tears, pains, doubts, and fears. But in the midst of it all, there have been moments of joy, inexplicable peace, abundant blessings, and miracles.

“Difficulty is actually the atmosphere surrounding a miracle, or a miracle in its initial stage. Yet if it is to be a great miracle, the surrounding condition will be not simply a difficultly but an utter impossibility. And it is the clinging hand of his child that makes a desperate situation a delight to God.”
-Streams in the desert

October 28, 2013 was the day we found out that Luelle had open Spina Bifida. I was more afraid and overwhelmed than I’ve ever been. I thought about all the things our daughter may never do and all the struggles before her. I thought about how our future looks drastically different than what I had pictured. I remember every moment of that day. I remember the long list of major complications the doctor listed, the big decisions we had ahead of us, and the countless unknowns. I remember feeling so afraid I couldn’t breathe.

October 28, 2013 was the day we found out our second child was a girl that God had already given us a name for. A few weeks prior I had a dream that Lu was a girl so I already knew. I have wanted to have a daughter my whole life. Now I remember the day my water broke and we got to meet our baby girl. I remember the first time she smiled. I remember the first time I saw her little legs kick and toes wiggle, something I didn’t know if I would ever see. I remember the first time I heard her laugh. Oh my goodness I love her laugh. She laughs so much. I remember the first time Bobby held her and stared in awe. I remember the first time Chale carefully kissed her and smiled so proudly. I remember how special it was the first time the four of us were back in our own apartment. We were finally home together.

Since that day in October almost a year ago, I have not slept through the night. Before Luelle was born I would lay awake for hours crying, fearful, anxious, or simply unable to turn my mind off. After the fetal surgery, the pain was excruciating for a few weeks and I slept little. I also had to take medication every six hours to prevent contractions so we had to set alarms during the night. The end of my pregnancy I was admitted to the hospital for three weeks so frequent monitoring and meds kept me up. Now, Luelle is almost eight months old and has yet to sleep through the night. Bobby and I are so tired.

Bobby and I have shared some of our sweetest moments in the middle of the night this past year. I’ve been awake crying and anxious and he would hold me and pray, talk, or cry with me. I have wept and pleaded with the Lord many times in the early hours of the morning. Many nights I would lay awake calmed by worship music or so often the constant, faithful prayers of family, friends, even strangers who were praying for us. Now, although I’m so tired when I wake up to feed Luelle, I look at her and can’t help but be amazed at the little miracle in my arms we’ve been entrusted with.

Last December 1st we packed up our apartment and drove to Philadelphia. We would either return December 2nd if we didn’t qualify for fetal surgery, or not for six months if we did. We did qualify and December 4th Luelle and I had surgery simultaneously. It was terrifying, extremely painful, and a major risk. The months following surgery were more difficult than I had imagined. Every shooting pain, I wondered if I was going into preterm labor. I was on bed rest for three months. It was so hard to be away from Chale for weeks. We lived out of bags for six months moving around to hotels, the Ronald McDonald house, the hospital, and family and friends houses.

As we headed to Philly last year, although we were leaving our community, church, and friends, we were overwhelmed by support. Friends and family from all over the world reached out to us. What a gift to experience the church and community as it’s meant to be. We were covered in prayers, were blessed abundantly with gifts, finances, meals, notes of encouragement, and so many conversations of love and truth. Chale had the time of his life with our families while he was away from us. He was so loved and cared for and has a special relationship with them that otherwise he would have missed out on. We spent such special, sweet time with my sister and her family who live in PA and our families that came up multiple times from VA and MD. During our time at CHOP, we met some incredible people. We had encouraging, meaningful conversations with the staff at the hospital and formed lifelong friendships with families we met in Philadelphia. Many were other families who have children with Spina Bifida. What a gift to meet others who are on such a similar journey. Some were families we met while staying at the Ronald McDonald house. We have been forever changed by their stories of incredible struggle, hope, endurance, and faith. We lived with a family from our church that we barely knew for about a month before we could move back into our apartment on campus. That family continues to be such a blessing to us and are now dear friends that feel like family.

If I’m honest, we’re still really struggling. As I write this, Lu has had over two weeks of diarrhea, was in the ER because she was having 15-20 diarrhea diapers per day, and now has a UTI that we are praying isn’t from bladder and kidney complications of her spina bifida. Her ventricles have slowly swelled since birth and in December she is getting a sedated brain and spine MRI to determine if she needs another major surgery. My back flared up this past week, the worst it has since my spinal fusion in 2011. We are so afraid of my back pain not resolving to the point where I can function and care for the kids.

Often I am angry and bitter about how challenging life has been. Bobby and I went through my first back surgery when we were engaged and we’ve had 6 other surgeries between the two of us since then. We are ready for a break. Often we feel isolated. Some of this is our fault because we have pulled away from a lot of people and activities because we’re exhausted and struggle to connect. I hate that now when I meet people instead of finding similarities in order to connect, I find excuses to pull away. I mentally categorize whether someone’s situation is harder than ours therefore I have no room to share, or easier which means they just wouldn’t understand me.

Another reason that I think I’ve isolated myself is that I didn’t expect to be on the receiving end of support for so long. If I’m completely transparent, it’s because of my pride. We have been given so much from so many people around us. I’m embarrassed at how many meals we’ve received, how many times we’ve needed babysitting, and how many times we’ve had to decline invitations because we were overwhelmed with life. It’s hard for me to accept that I can never reciprocate to the extent we’ve been poured out on. I think sometimes I avoid people because I don’t want them to know how much we are still struggling because I feel like I should be able to handle things by now.

Most days I try to avoid God. I know that’s ridiculous but it’s true. I’m angry with Him. I’m confused. I’m afraid.

I used to think if I “trusted” God, life would be easy and I would get what I wanted. I would never have said that out loud but that’s how I acted. Over the years, God gently has shown me that truly trusting Him means trusting not to avoid struggles but trusting in the midst of them.

Most genuine Christians acknowledge that we don’t believe in a health and wealth gospel meaning we don’t follow Christ to get money, ease, etc. We can be so harsh on churches that push this thinking that life should be peachy if you are a Christian. While this thinking is completely wrong and should be challenged, I confess I often believe a false gospel. I find myself pursuing an emotional health and wealth gospel. I may accept that life is hard and trials will come but I seek Jesus in order to get contentment, peace, joy, etc. not to get Jesus.

I do believe Jesus gives us these things but they are supposed to be a byproduct of walking with Him. Jesus is the prize. I don’t even fully understand it. I think part of it is accepting we will receive His gifts on His terms not ours, which is hard to swallow. Bobby and I were recently talking about contentment. Contentment isn’t a feeling, it’s a choice. I hate that. I want to just feel content but choosing it means choosing it in the midst of hard circumstances. Without Jesus, we won’t be able to choose contentment.

Following Jesus isn’t a one time decision. It’s a daily, hourly choice.
Jesus walks with us and says…
“Will you follow Me today?”
“Will you follow Me even through this?”
“Will you follow Me even if this never happens?”

We have to choose each time to follow Him. So often the path looks bleak and feels impossible and hopeless. He isn’t asking us to understand the journey or even His hand in it. He is asking us to trust Him each step. To simply say yes when He asks us to follow Him.

I have so many questions. I struggle often with anger, fear, and hopelessness. But I do believe God is good. Sometimes I don’t understand it, probably most of the time. But I know He is good whether I understand it or not.

“…so I say, ‘My endurance has perished; so has my hope from the Lord.’
…But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. ‘The Lord is my portion,’ says my soul, ‘therefore I will hope in him.’ The Lord is good to those who wait for him, to the soul who seeks him.”(‭Lamentations‬ ‭3‬:‭18, 21-25‬ ESV)

The Presence

We have been together as a family of four back in our apartment in Massachusetts for almost two weeks. It’s great to be home. We are thankful for Chale having his own space to feel comfortable and goofy again, for soft toilet paper, for space to cuddle, play, and relax as a family, and to be able to walk around the house in our underwear if we so choose.

It’s been hard being back too. We feel like we are starting over here in some ways. It’s overwhelming to have lost all our momentum. Bobby had been doing so well in his classes and had found a rhythm of studying and learning. Because all that halted so abruptly last October, it’s going to be difficult to start again in the fall. We had been so involved in the community here and we’ve missed so much after being away for so long. We struggle knowing how to enter back into life here when we have been dramatically changed. We have seen life and death. Our hearts have been broken and softened in ways I can’t explain. Some things that seemed so important to us before no longer matter. We see people differently. We pray, endure, parent, grieve, and rejoice differently.

How do we share what we’ve experienced the last 6 months when we don’t even understand it?

Luelle is almost 11 weeks old and doing great. In fact, she really couldn’t be doing better. I still struggle with how to handle this. Her initial diagnosis was overwhelming. I’m overjoyed that she has feeling and movement down to her toes and her bladder and brain are functionally completely normally so far. I’m trying to accept and be thankful for how well she is doing but at times feel so afraid of the many issues that can still occur because of her spina bifida or complications from the fetal surgery.

I don’t want to have that attitude. Why do I expect the Lord to explain everything to me or to work in accordance with my plan or expectations?

What should matter most is to know that He is present with me in the midst of my hardest days and my best. What, why, or how He works really is up to Him. If I believe He is good, just, and loving, then I can trust Him to work however He chooses. Allowing this truth to permeate into my thoughts and emotions each day is what is challenging.

A few weeks ago, my mom and I were talking about Shadrach, Meshach, and Abednego who were thrown into a fiery furnace because they refused to bow down to the king’s idol.

“Shadrach, Meshach, and Abednego answered and said to the king, “O Nebuchadnezzar, we have no need to answer you in this matter. If this be so, our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of your hand, O king. But if not, be it known to you, O king, that we will not serve your gods or worship the golden image that you have set up.” (Daniel 3:16-18 ESV)

The fire was so hot that the king’s men who threw them into the fire were killed. But Shadrach, Meshach, and Abednego were not only unharmed but they didn’t even smell like smoke after the whole ordeal. Something else happened while they were in the furnace. In Daniel 3:25, while watching the men in the furnace, the king says, “But I see four men unbound, walking in the midst of the fire, and they are not hurt; and the appearance of the fourth is like a son of the gods.” Perhaps the real miracle is not the absence of the fire but the presence of Christ in the midst of it. I’d guess that’s what they remembered most from that experience. That Christ in His perfect power and love entered into the fire with them.

As I continue to let truth and faith impact my emotions and experiences, I’m reminded again of the passage of Jesus and the disciples on the boat, (Luke 8:22-25). When Jesus speaks to the disciples in the midst of the storm, He asked them “where is your faith?” That’s the big question. If their faith was in the boat then of course they should be panicking. But if their faith is in Jesus then it doesn’t matter the magnitude of the storm or the stability of the boat. What matters is what they believe about Jesus.

Our circumstances do affect us. We experience real pain and heartache. God grieves with us over suffering. But our circumstances don’t need to define us. What defines us is who we put our faith in.

Jesus presence changes things. It not only changes us in our trials but determines our outcome. If Christ is with us, whether we are rescued from the fire or consumed by the the storm we will not be overcome. As followers of Christ we may be rescued in this life or delivered into eternity with the Lord. This is our hope. That with Christ we are secure no matter what.

“Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword? …No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.” (Romans 8:35, 37-39 ESV)

We all have known or unknown trials ahead of us. My back has been bothering me lately. After having two major spine surgeries it’s really hard not to be anxious about the possibility of major issues. Bobby still needs one possibly two shoulder surgeries. Luelle has more important follow ups this year and for life will have to be aware of possible complications of her condition. But focusing on all these obstacles is like putting all our energy in preventing the fiery furnace or fortifying the boat. We need to put our energy into knowing and being with the One who is with us in the fire and the storms. The closer we are to Christ the more we are overwhelmed by His power and love and not the magnitude of the trials before us.

His love in time past forbids me to think
He’ll leave me at last, in trouble to sink;
Each sweet Ebenezer I have in review
Confirms his good pleasure to bring me quite through.
-John Newton

For I know that the Lord is great, and that our Lord is above all gods. Whatever the Lord pleases, he does, in heaven and on earth, in the seas and all deeps. He it is who makes the clouds rise at the end of the earth, who makes lightnings for the rain and brings forth the wind from his storehouses. (Psalm 135:5-7 ESV)

Then Job arose and tore his robe and shaved his head and fell on the ground and worshiped. And he said, “Naked I came from my mother’s womb, and naked shall I return. The Lord gave, and the Lord has taken away; blessed be the name of the Lord.” (Job 1:20, 21 ESV)

Abundant Life

Luelle is a little over one month old. What a journey it’s been from her diagnosis, to fetal surgery, to her birth. I continue to experience such a range of emotions; joy, anger, hope, bitterness, fear, awe, thankfulness, etc.

Luelle is truly a miracle. Over and over again the doctors have said how impressed and surprised they are at how well she is doing. A few have questioned the extent of her spine defect but we have MRI’s showing the severity of it. She shouldn’t be doing this well but God has chosen otherwise.

Initially, when we started getting all this positive news about Luelle, I responded quite poorly. I convinced myself that the bad news was coming. Instead of being thankful I felt bitter. I thought about all we have been through with Lu and our other health issues and I was angry. I chose to be fearful of the future anticipating what bad things would happen. I felt guilty and heartbroken for all our friends at Ronald McDonald house whose children aren’t doing as well as Lu.

How am I to rejoice over our miracle when others are experiencing such heartache?

I don’t really know the answer to this but the Lord continues to speak into our lives. I have been reading and thinking through John 9.

“And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.” (John 9:2, 3 ESV)

Our trials are not about our sin or our goodness. They are about the work of God being displayed through our lives. The fact that Lu is doing so well has nothing to do with us. We did nothing right or wrong to earn this. God saw fit to bless her. The fact that we and others struggle has nothing to do with us. God sees fit to give us trials and refinement in order to reveal Himself through it. It may be easy to talk about this theoretically but it’s not easy to live. Life is hard and full of pain. Pain beyond what we can imagine. I never in my wildest dreams thought that our family would experience the amount of pain, surgeries, hospitalizations, procedures, and medical issues that we have. Sometimes it is really hard not to be bitter.

I also think of dear friends who are experiencing hardships beyond what they ever dreamed. What I strive to remember is that God’s heart is to show us His miracles. God often works miracles in the darkest of places. I guess that’s what makes something a miracle, it surpasses all human or natural reason. If it were simple, easy, or rational it wouldn’t be a miracle. Experiencing these miracles mean seasons of darkness but without the darkness we can’t experience His glorious light.

I believe that God wants to personally intervene in all of our lives. Perhaps we miss the miracles all around us because we need to change our definition of miracle. God’s miracles in our lives are unique and personal to each of us. It could be healing, perseverance, peace in the midst of pain, hope despite desperate circumstances, or joy in the face of hardships. All of these are miracles.

The enemy’s goal is to steal the joy we can have in these miracles. He wants us to turn to fear, doubt, and anxiousness instead of choosing in the moment to see whatever miracle God is showing us.

My heart is for God to reveal His power, His miracles in all our lives. My prayer is that my friends who are hurting, even in the midst of their worst pain, that God would show them miracles.

I want to share our miracles. Not to brag or take any credit but to honor the incredible work God is doing. I want to give others hope that they can trust God in the darkest times because His light always shines brighter.

“The thief comes only in order to steal and kill and destroy. I [Jesus] came that they may have and enjoy life, and have it in abundance (to the full, till it overflows).” (John 10:10 AMP)

Praising in the Chaos

I’m 36 weeks today. I’m quite surprised to have made it this far after undergoing fetal surgery. Time may have flown by for those watching but it has not gone very quickly for us. I have so many mixed emotions (and I’m sure crazy pregnancy hormones) that have been overwhelming lately.

When I think about what I would like to do in order to prepare our family, home, and life for another baby, our current situation is not exactly what I had in mind. We have been living out of bags for three months. Most of our belongings are packed in storage or our car. Chale has been back and forth from VA to PA and we have not been together as a family for much of this season. I haven’t been able to do anything physical since December 3. We have eaten terribly, and feel the effects, due to limited options of hospital food, take out, and poor self control. I have no stock of frozen crockpot meals and no cute girly nursery decor. It’s extremely frustrating to have hours to work on puzzles wishing I could use that time to do something productive to prepare for this new baby.

I am so excited to have a baby girl but feel so overwhelmed already. I had a breakdown yesterday thinking not only how unprepared I am for a newborn but a newborn with an unknown degree of issues. I feel defeated and we haven’t even started yet. There has been so much put into this pregnancy and surgery but the outcome isn’t that everything is now okay. Spina bifida varies extensively. Nothing is definitive. They will do baseline tests when she is born and then regularly throughout her life. Even if many of these tests are normal at birth, often these kids need shunts, surgeries, catheterization, castings, etc. as things progress. We can’t predict what her abilities and limitations will be and have to deal with issues as they arise.

Sometimes I’m able to not think about the future and to just focus on the present but ultimately that doesn’t take away the fear surrounding the unknown path ahead of us.

In the midst of my tears the Lord brought Gideon to mind. God came to him and said,“…The Lord is with you, you mighty man of [fearless] courage, (Judges 6:12 AMP). God told Gideon that he was going to save Israel from the Midianites. Gideon quickly reminded God that he was the least in his father’s house and was from the weakest clan. He was unqualified and unprepared. God’s response was “But I will be with you, and you shall strike the Midianites as one man,” (Judges 6:16 ESV). Further into the story, “The Lord said to Gideon, The people who are with you are too many for Me to give the Midianites into their hands, lest Israel boast about themselves against Me, saying, My own hand has delivered me,” (Judges 7:2 AMP). There were 32,000 Israelites with Gideon preparing to fight Midian. Gideon sent a large number of them home and then there were 10,000. God said there were still too many. God instructed Gideon to decrease the number of men again until there were only 300 Israelites. 300 Israelites versus several hundred thousand Midianites seems like a pretty terrible battle strategy. Why did Gideon go along with this seemingly ridiculous plan?

God called Gideon a mighty man of courage. God told Gideon that He would be with him. God wanted to give Midian into Israel’s hands in such a way that it was clearly God’s doing, not theirs. Gideon believed God despite appearing to be ill equipped and he moved forward boldly into a situation that seemed foolish. God was faithful. He delivered Midian into their hands.

God’s glory is what matters. Often the more desperate the situation the clearer God is seen in it. The less equipped and prepared I am for this next step, the more room I have in my hands, heart, and mind for God. I have to accept that things may be unpredictable, untimely, and unconventional. I have to trust that in the chaos God is able to do so much more than my simple strategies ever could.

So often I despise the unpredictable. I want to keep my 32,000 men, make my detailed, strategic battle plans, and go into the fight as prepared as possible. Why is this? I don’t want to confess my pride and relinquish my attempts at controlling my life. For Gideon, or me, to be okay with the crazy battle plan of only 300 men we must choose faith.

“Now faith is the assurance of things hoped for, the conviction of things not seen,”(Hebrews 11:1 ESV). Having faith in God means that me are assured of His faithfulness and promises even when they are not seen. Sometimes I say that I have faith in God but I still want to see his detailed outline of the next steps. That’s not faith. Faith is believing that God is good, powerful, and present even when I can’t see it, when things don’t make sense, or when things seem be crumbling around me.

After the Lord revealed to Gideon His plan to overcome Midian, Gideon “…worshiped. And he returned to the camp of Israel and said, “Arise, for the Lord has given the host of Midian into your hand,” (Judges 7:15). Gideon was so confident that God would do what He promised, that Gideon stopped and worshipped Him BEFORE the battle was won. That is the kind of faith I want. To be utterly convinced of God’s character that I can praise Him before I see His actions.

Gideon also proclaimed to others what God would do before it happened. That’s how we share our faith. We speak and live in such a way with others that we boldly proclaim God’s character regardless of our circumstances.

When I prayed and asked the Lord how to have this kind of faith, His answer wasn’t try harder, read more, or get your act together. To have this kind of faith, God simply wants us to be with Him. When we know Him intimately, we experience His character and deep faith is the natural outcome. When we daily walk with God through joy and pain, we learn how to live in faith.

Instead of being fearful and anxious about how unprepared we are for this new baby and this unknown journey we are about to embark on, my prayer is to stand in awe in God’s presence confident of His faithfulness to us. My hope is not in my plans or strategies but in His character that has never failed us.

 

With you all as my witnesses, I praise God now for our baby girl. I praise God for her life, no matter her limitations. I praise God for providing for our needs in His timing and ways. I praise God for being constantly present with our family even when things are chaotic. I praise God for the incredible things He will do in our lives not because of anything we have done but because He is great and He has called us.