It has been sixty-one days since I heard the words that shook my world. Sitting in a surgical waiting room at a children’s hospital, my husband and I sat huddled together on the waiting room sofa. Our daughter’s neurosurgeon sat across from us. Elizabeth’s pre-op brain MRI revealed more issues than we originally anticipated. In addition to the hydrocephalus (an excessive build-up of spinal fluid in her brain), she was also dealing with some additional brain abnormalities. The corpus callosum which connects the two hemispheres of the brain was completely missing. It apparently never developed in utero. There was less white matter in her brain than what is considered normal and she also has some spinal and rib deformities.
Just dealing with the hydrocephalus (which is a life-long chronic condition) felt overwhelming. Then, to have a neurosurgeon explain that your daughter was also missing part of her brain felt like more than I could handle in that moment. My heart dropped. A thousand questions ran through my mind, but there wasn’t time for answers. Our little girl was waiting for the surgeon in the operating room.
We were left to wait. I squeezed my husband’s hand. I stared at the wall. I sat in shock for a moment.
What would this mean for her? For us? Would she be able to function normally? Would she be able to grow up, go to school, get a job, raise a family of her own? Would she be able to live independently or will we need to take care of her for the rest of her life? In that split second, all of my plans and expectations for the future came to a screeching halt.
This is not the future I had in mind for my little girl when I saw those two little lines on that pregnancy test. I had to table thoughts of tea parties, prom dresses, and wedding planning. What seemed like a bright future suddenly felt very dark. In that moment, we didn’t know what else to do but pray. We thanked God for our daughter and prayed that God would give us the wisdom and strength and peace that we would need in the days ahead. We prayed that God would watch over her while she was undergoing brain surgery. That God would use this situation to enable us to minister to others.
I’ve probably started and stopped blog posts half a dozen times over the last two months. I just never could bring myself to hit “publish.” What could I say? My baby is missing part of her brain. It feels big and scary and hard. I don’t have all of the answers.
Because, to be honest, this whole situation feels overwhelming at times. There are days where just the smell of coffee makes me tear up. There are other days where my heart races and my mind imagines all of the possible worst-case scenarios. There are days when it feels like the anxiety and the fear may overtake me. There are times when I just want to curl up with a roll of cookie dough and a Hallmark Channel movie.
But for Jesus.
Every step of the way he has been with us. Over and over again he has whispered, “Trust me.”
Faith feels easy when it’s just a matter of showing up to church on a Sunday morning. Faith feels harder in the trenches. When you’re sitting next to a baby in a hospital room. When you listen to doctors list off possible outcomes, and some of them are frightening. Faith is harder when you have to reconcile the fact that just because God CAN heal doesn’t mean that he will.
Scripture has become to me an anchor. Whenever I feel myself start to drift over into depths of fear and anxiety, I HAVE to make the conscious choice to redirect my mind. I turn on worship music. I read the Psalms. I put on a Bible Podcast or a video Bible Study – not because I’m some sort of super-spiritual person, but because I’m desperate for peace, and it’s the only place I can find it. Jesus does not disappoint. His word provides peace when my world feels unsteady.
Because the truth is, God is still good even when our situation is not.
The night before her surgery, I pulled out a small notebook. I wrote down every scripture that people shared with me. I wrote out my prayers and my fears. I pleaded with God to heal my little girl, but I also prayed for His will to be done. Those are scary words for a mother to say.
I know that God has a purpose and plan. I know that there is glory hidden in the gory mess of snot and tears and sleepless nights.
This is the path He has chosen for us. Because He is Good, because He is Love, I can trust him. That doesn’t mean He’ll do what I want Him to do. He’s not some cosmic genie waiting to grant our wishes if we follow some specific ritual or recite some magic words. He has a plan and purpose bigger than what we can currently see.
He’s not out to hurt us, but to help us and to help those around us find hope in Him too.
This morning, Elizabeth and I attended a Priscilla Shirer Simulcast at a local church. It was one of those things where the Holy Spirit made his point abundantly clear, to the point where you wonder if the speaker has been sneaking peeks at your diary (and also makes you glad that you opted to wear waterproof mascara that morning):
Priscilla discussed the passage from 2 Kings 5, where a captive Israeli servant girl tells her captor how he can be healed of his deadly skin disease. This young girl probably never anticipated that she would be captured and spend her life in service to a Gentile far away from her home, but had she not been there, had she not spoken, then Namaan would not have been healed. A miracle would not have taken place. His leprosy would have killed him. Instead, this official and all those with him were able to see the power of God at work.
“You’ve not been cheated. You’ve been chosen.”
God has allowed these particular circumstances into my life for a reason, for his Glory, and for my ultimate good. I’m not “missing out” on some great opportunity because my daughter has a brain deformity. God has given me everything I need to fulfill my purpose and everything Elizabeth needs to fulfill hers. Maybe our story will bring Hope to someone else facing challenges that seem insurmountable.
Elizabeth’s deformities are not a surprise to God. They have been allowed for a reason. She’s here for a reason. While it’s hard to wrestle with why God “allows” bad things to happen to innocent people, it’s easier when you understand the character and nature of God. The world we live in is broken and imperfect, because of that, bad things happen, and yet God does not delight in our harm. He does not delight in our destruction. He does not seek to “steal, kill, and destroy.” The enemy does that.
He has come that we might have abundant life. He is our help. He is our strength. In those moments of weakness and overwhelm, He steps in and sustains. The saying that “He doesn’t give us more than we can handle” isn’t true. There are plenty of things that are too big for me to handle in my own strength, but with Him, I can. With Him, no situation is too difficult or insurmountable.
The enemy wants us to give up hope. He wants us to become angry with God, to grumble, and be consumed with fear of the future.
God is asking “Will you trust me with this? I will never leave you or forsake you. My plans are not your plans. My thoughts are not your thoughts. All authority in heaven and on earth has been given to me. I will fight your battles. I will provide for your needs. Let me be the source of our strength. Let me be the anchor of your hope. My plans for you are good because you are dearly loved by me.”
Who knows. God may still choose to step in and heal Elizabeth. He can do that sort of thing – either through the wisdom of medical professionals or through flat out “we can’t explain this” miraculous activity. That’s my prayer a dozen times a day, that he would restore and protect her mind, that she would be able to live a full and abundant life and not be hindered by her birth defects.
This whole situation is bigger than us.
It’s not the way I would have written our story. I’m not sure if we’ll have a “happily ever after” this side of heaven, but that’s OK. Because this life is temporary. Heaven is eternal. So that is where we’ll fix our eyes. We’ll continue to trust and wait and hope because what God plans God will accomplish, it doesn’t matter what the odds or statistics or medical prognosis says.
We do appreciate your continued prayers for our family and for our little girl. We’ll be traveling back to the hospital in a week for more doctors appointments, another MRI, and additional testing.
We continue to pray that her MRI reveals positive changes and that she won’t require any additional brain surgeries, and yet in all this, we choose to trust not in our own plans, but in His.
Thank you to all who have prayed for our family over these last few months. I can personally tell such a difference in terms of the peace and provision we’ve experienced. I feel confident that God hears our prayers on her behalf. Now the waiting continues to see what He will do.
Amen sweet sister. There is going to be a God surprise in this somewhere and sometime. I can see you are in priest training. Remember, we are going to be priests and kings unto our LORD.
What a beautiful testimony of the faithfulness of our mighty God, Sarah. Learning to walk by faith is such an important and life-changing lesson. “Without faith, it is impossible to please God.” Thank God for that lesson, and thank God that with faith, all things are possible. If not here, then in heaven one day, there will be complete and perfect healing. Praise God for that promise and for His constant presence this side of heaven to walk us through every circumstance. Praying for you, sweet girl.
Praying for you Sarah and your sweet family. It’s all in Gods hands and He will lift you up. Thank you for your words in this blog. Love to you all.
God has given you such a gift of words. You are an inspiration to me. Your knowledge of God’s word and ability to share it is a true gift. I pray for your family as you continue on.
As my tears flow, I am so thankful that we have a God who is bigger than we are. I can empathize with you in some small way because I have a son who was born with minimal brain damage and a grandson with that problem, too. But , you and BJ are going through so much more. Yes, I, too, believe that God can heal miraculously. But we, also, know that He may have something in store for Elizabeth and your family that will glorify Him so much more. I do know that by you sharing your struggles and God’s unfailing love, gives me strength and peace in my own life.
Please know that I lift you and your family in prayer every day, asking
God to supply your needs and to use this sweet little girl , and you ,to touch other lives who are, also , struggling. I pray for God’s will to be done as He knows best. I hope that you know that you and your family are loved and prayed for every day by many, many people. May God’s blessings shine upon you.
Sarah, this is Ann Abbott, a friend of your grandparents, D.L. and Alice Lowrie. I am a mom, and my husband the dad of a young man who has Down syndrome. When he was born, we were on the mission field, and by God’s grace, we still are, although spending much time in Texas. I want you to know that we’re walking in faith with you. No one can predict or explain what you will face nor Elizabeth. All you wrote is true. Please friend me on Facebook and read the post I just did by Plough, a devotional. The Lord is with you and He has a plan, beyond all of us.
Sara, your Dad and I have known each other for years. And your mom is such a wonderful lady. I can imagine the fear. You mentioned “but for Jesus.” In those dark times in my life I have held on by a thread to two words that change my world. BUT GOD. Her situation may be serious BUT God. You may be terrified, but God, you may have to alter your plans, dreams, hopes and visions of the future, BUT God. There are literally thousands of people praying for you, your husband and that precious little girl. I have learned in the bleakest of circumstances to remember, Life is difficult and frought with peril, BUT God loves to show up and show out. We are waiting for one of His greatest performances in the life of that beautiful little girl.
Sarah:
Your dad and I graduated from ETBC together. My wife and your mom were in a Christian singing group together. When I first heard about your precious little angel, I first thought about your parents and their strongholds of faith. I thought about you and your husband and the feelings you must be experiencing. But then, I thought of your precious daughter, such a beautiful little girl, and the testimony she already has to share. Each morning, on my way to work, I pray for your daughter and your family and will continue to do so. Thank you for the power of your post. We serve a MIGHTY God !
David Kinney
“I know that there is glory hidden in the gory mess of snot and tears and sleepless nights.” What a powerful sentence… Cannot read it without crying, but they are tears from deep peace and joy at the reminder of the promise of God’s achieving His perfect plan and purpose in our lives in the midst of life’s greatest heartaches.
Thank you for this deeply meaningful post. Please know that you, your husband, precious Elizabeth and all your family are in my prayers.
You are a blessing. Thanks for your transparency.
Wonderful writing peace. I am sure your words are full of serenity and love also faith. I felt weak with no words to say. But you know where your power Is.
Sarah, your blog really spoke to me this morning. I have prayed for your sweet family and will continue to do so. Its abundantly clear God has sustained you and your family thus far and that you know He will continue to do so. Just know you are making such a difference with your testimony. Thanks for blessing me today.
Praying for your precious gift from God, Elizabeth. It sounds like the Holy Spirit is giving you peace and comfort, even tho I know some days, hours, minutes or seconds are very challenging. I pray God give you guidance and security as you make majors decision on her behalf.
Thank you for opening up in your blog. I’m sure it will help many others that are walking through desperate times with their babies and children.
God bless you!
Your words ministered to me today, not that I can relate, empathize or feel what you are feeling and facing. But, I too pray for things, people, healing and I too struggle with God’s will, the bigger picture verses my wants, my desires. I’ve been trying to get out of the way in my prayer life and quit asking selfishly for what I assume is best. I think you expressed it beautifully, but you’re human and our understanding of humanity is so different from God’s purpose. I think God is so compassionate that sometimes when we pray, He must say ok, for just a little while I’ll give you your way. I want His best and your words showed me that His best is a baby that is different from what we would have formed. His best is a mom and dad struggling to make sense of a baby’s future, falling on their knees fully submitting to His will. How beautiful is that picture of you fully in tune to God, every minute, needing His strength and knowing you need it. You have been chosen! He thought you were worthy just as God found Mary worthy to carry His child. Thank you for your story, Keep writing.