Samuel's Story

Our pregnancy journey began in December, 2013 after years of praying to hear the words: "Congratulations, you're pregnant." The feelings of excitement and joy of finally receiving the desire and prayer of our hearts to start our family can't be put into words. 

The pregnancy started out with the normal exhaustion, occasional puking and hyper-emotions. Each time I ran to the toilet or ended a day completely dead on my feet, thankfulness was always on my lips. Each day was a treasure given to me after so many painful years of waiting, so all of the rough patches of pregnancy seemed like blessings.

By the time we got to our 20 week anatomy ultrasound I was feeling great; I had enough energy to workout consistently again, food started tasting good and the exhaustion was letting up. Not only did we make it to the halfway point, we were going to find out by the end of the week if we were having a boy or a girl. We were told that our baby was healthy and that he (our gender reveal dinner let us know we were having a BOY!) was measuring in the 88th percentile for size, which isn't a surprise since Tim is 6'4" and I'm 5'10". The ultrasound tech said she couldn't get a clear picture of something in the brain and even though she said it was nothing to worry about, she wanted to bring us back in 4 weeks for a follow-up. We didn't think anything of it because we've had friends who have gone through similar appointments. 

We spent the next four weeks doing everything normal first time parents would do. We went shopping for boy clothes, started dreaming about the nursery and Tim started talking about all the things he was going to teach our son. We came back to get another ultrasound when I was 24 weeks, excited to see our little guy on the screen again. He rewarded us with wiggling around the entire time and even sucking his thumb at one point. We were joking and laughing with the tech until a point in the session where she became very serious and focused. Call it either early maternal instinct or years of self-protection, I immediately felt like something was very wrong. She told us she was sending the pictures of what she was looking at to the off-site radiologist and would be right back. I'm laying on the table with tears already streaming down my face while my always- faithful husband is telling me that everything is going to be fine, that buddy is just fine. The tech comes back into the room and tells us that we're going to be put in a room for the doc to speak with us. Those minutes of waiting were harder than the 7 years it took us to get pregnant, the longest of our lives. 

When the doc came to speak to us, the look on her face said it all. She said that part of our son's brain hadn't developed and that he had a rare brain malformation called "Agenesis of the Corpus Callosum." The corpus callosum is a bundle of nerves that connects the left and the right hemispheres of the brain and allows them to communicate. Since this was her first instance of seeing this, she delivered the worst case scenario, that there would be a very good chance he would be severely disabled. I sat in stunned silence, heartbroken, not believing what I was hearing. It was like a bad dream I couldn't wake up from. Through tears and disbelief we left the doc's office and immediately called our church leadership for prayer and a couple of close friends that we wanted to pray for us. We could barely get the words out and at that point didn't want to really share this news with anyone. Our world, in a moment, had been turned upside down.

Thankfully, our doc scheduled a followup 3D ultrasound at Emmanuel hospital with the Maternal Fetal Medicine Clinic and an appt with a genetic counselor the next day. Neither one of us slept that night but I can't imagine what people who have had to wait for a week or two weeks went through. It was honestly the darkest, hardest night of our lives. 

We had our 3D ultrasound and the neonatologist came to speak to us about the results. He confirmed that our son did in fact have complete agenesis of the corpous callosum (ACC) but that it was an isolated condition. He said that was good news because a lot of times with these babies they have other issues: facial deformities, cleft pallet, shortened limbs, heart defects, etc. But at this point our son showed no signs of other issues. He went on to say because this was such a rare disorder that no one could provide an accurate diagnosis of how this would affect our son's quality of life but that the majority of the cases that have an isolated ACC end up on the "mild" end of the spectrum. He also said because it's isolated that more than likely this wasn't a genetic condition but just something that happens sometimes when things don't knit together correctly. The bottom line is that he could have developmental delays  (walking, talking, potty training) and issues with social development. He suggested an MRI on the baby once he's born to rule out any other malformations in the brain but other than that, there's nothing medically that could help us at this point. 

Even though it was devastating to hear the confirmed diagnosis, we left the clinic with hope. That's really all we have left to us.

We are choosing to believe in our God and in the promises of His Word, that ALL things work together for good, that He knows the plans He has for us, not to harm us but to give us hope and a future and that He's knitting Samuel Alan (means "asked of God") together exactly as he should be. However, we are praying with everything we have in us for a miracle. 

We are going back to Emmanuel today for a follow-up ultrasound and have been praying that God performs a miracle. We want to see that little part of his brain show up on the ultrasound and we are asking God to help it to grow. We understand that "scientifically" it's impossible for this to happen, but with God all things are possible. Even if it's not, we're praying that little Samuel will have a chance at a normal life-that he will walk, talk, learn, love, laugh-all the "small" and basic things parents want for their children. 

Tim and I debated for a long time whether or not we should make this public. Our final decision was based on that we didn't want to hide this under a bushel. We want this struggle to count for something and for God ultimately to get the glory in how He's working in the situation. If there is any good or light that can come from this and bless others, we wanted to take the opportunity to share it. Also, this is about our son and getting as many people praying for him as possible. Nothing else matters.

Here are some things we're asking anyone reading this to keep in mind as to how to help us:

1) Please don't pity us. Pity is probably the worst kind of torture when it comes to these hard issues. Not only that but it minimizes God's sovereignty and strength in the situation, like God made a mistake. But His ways are perfect and He is good ALL the time. 

2) One of the biggest concerns in sharing this with the world is that somehow people will treat our son differently or have a bias against him because of his condition. We are planning on (even if the outcome is more severe than we're expecting) to treat him like a normal kid. He will not use his "disability" as a crutch and we will make sure that he lives as normal of a life as possible-interacting with other kids, going to school, etc. He's not "disabled" until someone treats him like he is. 

3) Most importantly, PLEASE PRAY. PRAY, PRAY, PRAY. We know our God is BIG and is the ultimate healer. We know that He still performs miracles that fly in the face of "science" and we want Him to show his power. 

We'll keep you all updated. 

Much love,

Shanna and Tim

Freedom in Christ

Freedom. It's a word we use frequently in this beautiful country of ours. It took faith, courage and sacrifice for our forefathers to set out on an adventure to start a new life in the wild, unsettled young America. It was dangerous. It was costly. But it was worth it.

Even after all of that, I wonder if we know what being free truly means. We live in a fallen, decaying and broken world and there will always be forces working to destroy the pure and beautiful. The same is true in my own personal walk with Christ. My spirit is from heaven but my body is in the same condition of this world-broken and sinful. The struggle between flesh and spirit, darkness and light, is perfectly stated in Romans 7:15,18-19: "I do not understand what I do. For what I want to do I do not do, but what I hate I do...For I have the desire to do what is good, but I cannot carry it out. For I do not do the good I want to do, but the evil I do not want to do—this I keep on doing."

With such a grim sentence we're living through here on earth, trapped in these bodies that "wage war against the law of God", it almost seems hopeless. And trying to keep the law is hopeless...without Jesus and the Holy Spirit living in us. In fact, it's impossible. Our sinful condition is a terminal disease, never improving by our own efforts. Without the antidote of the salvation of the blood of Jesus, we are not only lost, but will eventually be strangled by our perfectionism and legalism.

The verse that got me thinking about all of this in the first place is II Corinthians 3:17: "Now the Lord is the Spirit, and where the Spirit of the Lord is, there is FREEDOM (emphasis mine)." Previously in the same chapter Paul talks about the "hope" we have in the glory of the ministry of the Spirit. The Mosaic Law had its place and its own glory, but Paul is making the point that the ministry of the Spirit is that much more powerful. It's grace vs. law, righteousness through Christ is it taken away. But whenever anyone turns to the Lord, the veil is taken away."
Christ vs. condemnation: "But their minds were made dull, for to this day the same veil remains when the old covenant is read. It has not been removed, because only

Jesus himself spoke about being slaves to sin in John 8:34-36: "Jesus replied, 'Very truly I tell you, everyone who sins is a slave to sin. Now a slave has no permanent place in the family, but a son belongs to it forever. So if the Son sets you free, you will be free indeed.'" In my own life I often miss this. These are "red letter" words, spoken out of the mouth of Jesus Christ, and still I don't let them become truth to me. They are a promise, a promise for freedom from addiction, from "self", from anger, pride, bitterness, fear...and all the pressure that comes with trying to earn grace or be "good enough."

So what does this all mean? Our relationship with God requires the same steps of faith and courage that our forefathers took to obtain freedom, but the sacrifice has already been provided by our Lord Jesus Christ. His death and the power of His blood paid the ultimate price for our freedom from sin and death. I don't know about you, but I'm tired of coming back to the same old chains, deliberately putting them on and sitting in a prison cell that's already been broken open. I'm free to go; I’m no longer in bondage, and no longer subject to a yoke of slavery! There is no power that exists that can keep me from the love of God and the lengths He has already gone to set me free. All I have to do is take a step into the Light.

Letter from God

My darling daughter,

I know you’re hurting right now but I can’t understand why you aren’t coming to me and talking to me about it. Each day I wait expectantly for your face to lift to me, for your knees to bend, but instead you choose to let the black cloud that surrounds your mind have the last word. I am waiting just outside of it.

It saddens me to know that you don’t have any idea how much I love you. That you taking the time to talk with me brings me the joy only a daughter speaking to her Father can bring. I long to hear what you have to say about things: how your day went, what emotions you’re feeling, your thoughts on life, your joys, your hurts, your prayers, your requests and your praises.

I crave your companionship and long to give you the desires of your heart, yet above all I want you to want only Me. I want to be first in your heart, for you to feel the pull of My love, for you to hear My whispers despite the noise from the ever-failing earth you live in. I am Real. I am Truth. I am Love. And I am all you can or will ever need. I am the only One that can give you true rest and true freedom.

Please give Me a chance to show you. Open your heart to Me; let Me in. I already know every fiber of your being-what makes you laugh and cry, how many hairs you have on your head-and since I am already living inside you, it should be an natural thing to do. I think about you more than you think about yourself…and My thoughts of you number more than the grains of sand on all the seashores of the world. I want to bring you freedom where there is bondage, to be the healing salve on the wounds you’ve endured from this world. I want to lead you towards my will: to shape you, change you, and mold you into the design I had in mind from the beginning, before you were ever a project on my workman’s table. I loved you so much that I died for you. I wanted you to see that I couldn’t bear the thought of being away from you for eternity, and that the only way you could be with Me is for My blood to be shed on a cross, defeating sin and death in one single blow. I bore all the shame, guilt, disease, and darkness of your sin for you.

My grace hangs heavy and full above you, ready to be poured out, waiting on your upturned face and heart. All you have to do is accept it. Let its sweetness drip down into the blackest recesses of your heart, lighting it up with gold, the thick richness of it smothering the weeds of fear, insecurity and lies as it goes. I want it to fill all of you so that you can truly know what it is to take My yolk upon you. All I ask of you is that you walk with Me and let Me lead you. I have such amazing things in store for you. Please trust Me. Please accept all of the gifts I want to give you. Let Me take the fear, anger, rage, bitterness, hurt, betrayal, perfectionism and all that you struggle with off of your shoulders. You were never meant to bear that kind of load, and I’ve already paid the ultimate price for it. You are My daughter and My princess, an heir to My kingdom. And I am your ever-loving, everlasting Father who adores you.

GOD

30 Days of Praise Day 30 James 2:14

What good is it, my brothers, if a man claims to have faith but has no deeds? Can such faith save him?”

James 2:14

We’ve been studying the book of James at church recently and the topic yesterday was faith. It was thought provoking, inspiring and convicting.

As most of my friends know, we’ve been trying to get pregnant going on almost 6 years. The heavy emotions that accompany infertility are impossible to explain, and like other trials, we question God’s intentions for allowing us to go through suffering. If we’re not careful, the roots of bitterness and anger can quickly take hold of our hearts and lives, rendering us useless for the kingdom of God and choking out growth.

Throughout the first chapter, James speaks of suffering and how we should rejoice when we experience trials of many kinds. And then in chapter 2, discusses how crucial it is to have “faith that works.” As I was sitting in church yesterday, that concept was that much more confirmed in my heart.

If I claim to believe God-that He is perfect, without sin, loving, caring, kind, with plans for my life, knows the number of hairs on my head, that his thoughts of me are more than the sands of the seashores-than the “work” of that belief or faith is trust. It’s knowing that although I don’t understand what He’s doing in my life, He has a plan. He has it all worked out. He has never let me down before, He has never intentionally hurt me, He is my Father, Savior, and the Lover of my Soul. And if I believe that is true, then His plan is PERFECT. And I want to rest in that peace. I want to live that peace. I want to close my eyes and lie down in my Savior’s arms and have him carry me in the direction He would have me go. I want my faith to be strong enough to endure the flames of trials without crumbling to ash at the first sign of heat. I want my faith to be not only evident to those around me; I want it to SHINE with the glory of God.

And if nothing else during this trial and this time of waiting, I want to be an example to those around me, a message of hope and the enduring truth that God is in control. Just because our finite minds think or our foolish lips speak otherwise, HE IS GOD. That never changes. He is absolute, indefinite, and eternal and my insignificant little life with all of its baggage and hurts and joys is not too much for him.

Although it might mean that the end result won’t be what I’m expecting, I’m pushing aside the paralyzing fear of being vulnerable (which is ironic since He already so utterly consumes me and knows me better than I know myself), I’m opening up my heart, stripping my soul bare and allowing His will to be done in my life. I am jumping off the cliff, knowing that His arms will catch me.

I’m choosing to live my faith.

30 Days of Praise Day 29 Joyful in Affliction

To say that life is a struggle is an understatement. Everything from small annoyances like imperfections in our bodies or sickness to devastating, life-changing losses can sometimes bury us under layer after layer of pain, sadness and just plain weariness.

I've been thinking lately on how easy it is as we get older to allow bitterness to get the best of us. It's sort of the human condition (one of the flesh of course, and not of the Spirit); we get hurt enough times or things go wrong enough and we pick up our "self-pity" mortar and "stay-away-from-me" bricks and build impenetrable walls around our hearts, locking our true selves away in the highest tower. Nothing gets in, we are protected; but that also means nothing gets out and our lives become stagnant. Somehow we slog through each day, battling the real and sometimes would-be threats that surround us...and it always feels like we're on the defensive.

This is a problem on a number of levels, but the most important question the Christian has to ask is Why? Why am I allowing this world to conquer me? Why am I not bringing this pile of hurts: the betrayal of a friend, the loss of a loved one, a hope deferred, or even just the everyday annoyances that can leave us exhausted- to the foot of the cross? Didn't Jesus tell us to come to Him "all who are weary and burdened?"(Matthew 11:28). Then why don't we do it? In my recent soul-searching, I've decided that I'm going to work on two things to overcome this issue.

1) Infuse every aspect of my life with the power of Jesus Christ: through reading His word every single day (it wasn't meant to be read once a week or every once in a while. Its power is most effective in frequent doses, i.e. our "Daily Bread" in Matthew 6:11), time in prayer and close fellowship with other Christians.

2) Praise Him for everything in my life, including my struggles. When the thought came to me it seemed a little self-masochistic. Why would I be THANKFUL for pain and for the trials I'm going through? The answer can be found in a little book called James: "Consider it pure joy, my brothers, whenever you experience trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, lacking nothing." (James 1:2-3). And the same message appears again in Philippians 4:4 "Rejoice in the Lord always, I will say it again: Rejoice!" So not only are we to rejoice in our suffering, but we are to consider it “pure joy.”

Wouldn't our lives emit such a sweeter fragrance to our Savior and to those around us if we were truly "joyful in hope, patient in affliction, faithful in prayer"(Romans 12:12) instead of bitter, angry and grumpy?

I’ve probably mentioned this is another post, but I have a recurring thought (I believe it was from the Lord) about how I represent myself in the midst of trials. What reward can there be when we’re under pressure or suffering from something the Lord has allowed in our lives, and we’re pouting like toddlers? That is, until things go our way, or we get the thing we’re asking for, or we feel the refining kiln fires cooling off and then we’re more than happy to give thanks and be joyfully praising God. Isn’t it about time we grew up a little bit? Do we really want to act like spoiled children?

I for one want to look back at the path that I've carved through the wilderness and know that with every step, God was given not only the glory, but the praise. That the tears that stream down my face are tears of deep thankfulness for all the blessings God has showered me with, even if it’s not exactly what I’m hoping for. That the hands I lift high in praise are to a benevolent, powerful, all-knowing God, even above the heavy aching of my heart. That my eyes aren’t focused on the problems in front of me, but on the ever-loving face of Jesus. And that I was glad when I endured this suffering because I am anchored to the hope promised to me by the Lord Jesus Christ in His Word: the faithfulness of a God that has a plan and a future for me, full of blessing and life and light.