I am brave because God is within me.
(For all of the posts regarding our 5th baby, please click here.)
This is the phrase I’m choosing to proclaim over my life, over each day, over each hour. I’m full of hope, and I will not live in fear over our baby boy’s diagnosis of Spina Bifida. Nor will I doubt the goodness that is yet to come.
When I feel fear come near, I think of Joshua 1:1–9 when God commanded Moses’ successor, Joshua, to be the next leader of Isreal. This was not an easy role, and the LORD knew Joshua needed to be brave. Three times in this passage God told Joshua to “be strong and courageous.”
And that is exactly what I am hearing God speak over me. “Be strong and courageous Maggie, for I am with you.”
We are treating this pregnancy the same as we did our other four pregnancies: with elation, trusting the LORD to do a mighty work through this child’s life. Truly, I share with you the only way I am able to breathe right now is because I know the LORD is walking before me.
I have since bought a couple of BOY newborn outfits, a washable puppy-dog “lovie,” and two new swaddling blankets. We are living bravely because God is with us. We will soon set up our oval crib and matching changing table.
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Allow me to be honest: when I don’t keep a Christocentric focus on my life, I am very fearful of the future.
I hear the enemy tell me so many scary things about my future, and I know they are false. God does not speak fear over me, He speaks LIFE and TRUTH.
I hear the enemy tell me I have to solve (on my own) the many details regarding the future, and that is false, too.
Three verses come to mind:
2 Timothy 1:7 –
“…for God gave us a spirit not of fear but of power and love and self-control.”
Psalm 4:8 –
“In peace I will both lie down and sleep; for you alone, O Lord, make me dwell in safety.”
Psalm 23:5 –
“You prepare a table before me in the presence of my enemies; you anoint my head with oil; my cup overflows.”
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I slept a total of 90 minutes Sunday, February 19th, the night before our big morning of appointments in Ann Arbor, MI. Our Airbnb was small, but our worship that evening was grand. Zack had set multiple alarms (haha) for the morning because we didn’t want to oversleep. All night long, while I was supposed to be sleeping, I kept wondering, “God, what are you going to do tomorrow?” The ways in which He chooses to work remain a mystery, though He reveals Himself to me when I draw near to Him (James 4:8).
We woke at 5am and expected God to show up in special ways at the Women’s Hospital.
Throughout my morning appointments, He did show up, though you can believe I also cried many times that day. It wasn’t until later that afternoon that I grabbed ahold of my mind (once again) and began to re-write the things I want to believe.
I am brave because God is within me.
I am strong and courageous, for the LORD is with me.
Our baby is wonderfully made. We will receive with rejoicing the knowledge God has given mankind so we can help one another.
First, my 90-minute ultrasound is still showing signs of Spina Bifida on our baby. BUT, we have a very active baby boy growing in my womb :) We saw some things that were unexpected, but we also saw a lot of health, and that brought encouragement. I will rejoice over all that God has done, and has yet to do, with this baby!
We then met with our Maternal Fetal Medicine (MFM) specialist, reviewing even more specifics of what is showing up on the ultrasounds. We discussed at great length what surgery will look like, along with my after care, and the success rate with prenatal surgery regarding the areas of concern. I can’t believe this may be my future, but I accept it if that’s where God wants to lead us. We are praying that baby and I qualify for surgery in 6 weeks (24 weeks gestation).
Third, we met with a genetic counselor to give family history and discuss the details of having an amniocentesis. Friends, I am AMAZED at the insight doctors have as they learn about the way God creates life.
Our God is a God of order, intentionality, purpose, love, and miracles. Every single child formed is a miracle. The LORD shows Himself to us in the unique way each person is formed. We have ultrasound photos from 11 weeks, 15 weeks, and 18 weeks, and just within that time frame our baby boy is growing and reflecting his Creator. It’s miraculous.
I know I write of my tears and fears, but I’m also filled with much rejoicing. I have much to be thankful for, and I recognize that. I have chosen Christ, and because of that, I have nothing to fear.
Our last appointment was an amniocentesis, a prerequisite for prenatal surgery to even be considered. Zack and I had multiple weeks to weigh the pros and cons of this procedure; we did not take it lightly. In the end, I decided to say yes to an amnio (my first amniocentesis ever), and I will be very honest, a portion of me was afraid. There is risk every day, in every choice we make, though usually the risk is immeasurable or not even considered.
But this decision had a different type of risk. I had to evaluate what I felt God was calling me to do as the mother HE made me to be. I took this having procedure very seriously, so please be kind as you process what I went through.
As I wrote earlier in this post, God has spoken a very clear message over my life.
I am brave because God is within me.
We went back to the ultrasound room. The tension I felt inside my body was strong, but it was a choice. I could live fearfully or I could live with reflection over Who owns my life. I was honest with my MFM specialist as she and the ultrasound tech prepared for another scan. I told her I was afraid of having an amniocentesis. (As if she couldn’t already tell, snort.)
Here is another example of how God showed up in a very special way. After I told my doctor of my fear she paused and said to me, “Does it help to know I am not nervous?”
Oh, yes, yes, absolutely!
I cried during the procedure. I cried over the pain. I cried over needing to be still and calm. I cried as I recognized my smallness when compared to the kind, loving, big God I serve. Zack held my left hand as the needle went through my uterus. My doctor spoke truth and assurance over me the entire time.
Afterward, once my belly was cleaned up, I was reflecting on what we’ve experienced. Of all the conversations we have had with doctors and nurses and counselors. We were reminded of the type of care I have to practice for the next 24 hours, and I signed my name on the line.
The doctor was saying her goodbyes, reiterating what was next for our plan to care for our baby and me.
Before she left the room I told her, of course with a broken-up voice, “Thank you for being so gentle with me today.”
She paused, her posture visibly buckled in my presence. She grabbed my foot and said, “Of course.”
I truly believe that is exactly the way God responds to us when we give Him our thanks. He see’s our hurts, our concerns, the tiny details that make up our lives. When we invite Him in and show Him our gratitude for all He’s done, why would He not respond with tenderness?
I am past the 24-hour “watch” for any adverse side effects. I am praising God for carrying our baby boy through without concern!
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My God showed up for me in three really special ways on Monday.
Thank you so much for joining me and my family in prayer. Please continue to lift us up, and please – if you don’t yet know your Creator, invite Him into your life by recognizing the joy He brings as He walks alongside you and renews your steps. Ask Him to save you from yourself, to be your Savior.
He will bring you under His pinion as He goes behind, beside, and before you.
John 3:16 ❤️
– – –
What is Spina Bifida?
Spina Bifida (SB) is an exposure of the spinal cord and fluid. This can occur anywhere on the baby’s back, and it’s exact location can cause a variety of side effects, including paralysis, motor function, and bladder/bowel control. SB cannot be reversed, but there are surgical options for improving the baby’s health and life.
What are the expected benefits of prenatal surgery on babies with Spina Bifida?
Many benefits abound:
- Improves motor function
- Improves cognitive function
- Decreases chance of infection at spinal cord exposure site
- Protection over injury of spinal cord during delivery
- May improve bladder & bowel control
- May improve ambulatory (ability to walk)
Your faith and openness is beautiful, Maggie. You don’t have to share any of these details, and yet you do and I know that God is using you to encourage so many! I am praying for you and your newest little one.
Oh Lauren, thank you. For two weeks I kept a lot of this to myself, I didn’t know how to process it and we were still waiting for more details. But once I wrote on my blog a huge burden was lifted. I am in awe of the prayer support. It’s so beautiful. Please keep praying, especially for housing while I’m healing near the hospital (which is 4 hours from our home). Please pray for a door to open so the financial burden isn’t high. xoxo
Dearest Maggie and Zack, I am so not surprised at the beautiful way that you are sharing this incredible journey with this precious child along with the strength that carries you through each day. You are a truly gifted writer along with so many other wonderful qualities. I too have been granted the peace from God that truly surpasses our understanding, there is simply no other way to describe it, what a gift as we wait in hopeful anticipation of the great things God has in store for your family and this baby boy. Gods got this!!! Mom Whitley xoxoxo
We are in agreement with you, mom! Please keep praying (I know you won’t cease), especially for housing while I’m healing near the hospital. Please pray for a door to open so the financial burden isn’t high. xoxo
Wow! I just clung onto every word of this post, it was so encouraging & inspiring! baby boy’s life is already helping others see God move & work!
Courtney friend, thank you for your prayers and kind words. Please keep praying, especially for housing while I’m healing near the hospital (which is 4 hours from our home). Please pray for a door to open so the financial burden isn’t high or a stressor while we wait. xoxo
Thank you for sharing your heart and your family with us. Prayers and Hugs.
Thank you, dear Angie. xoxo
Oh girl, I am absolutely sobbing after reading this. It breaks my heart that you are making such scary and hard choices. I’ve read your blog off and on since before you ever had kids and I appreciate how much you share about your faith while being honest about fear and not knowing what Gods plan is. I’ll be praying for you and your family.
Katie friend, thank you for your thoughtful comment. I give all of this to Christ because I am nothing without Him. Thank you for your prayers. A specific request we have is for housing during the 3-4 months I’m recovering from surgery. We are on a waitlist with Ronald McDonald house and are trying to use these five weeks before surgery to get a few things squared away. Thank you again for your comment and kindness. xoxo
I will absolutely be praying for housing. ❤️
Dear Maggie, my heart felt every word of this post. I do not the right words at this moment but I do know that we serve a mighty God who never leaves us. I am thankful for the gift of faith he has sewn into your heart and soul. Please know that I will be praying daily for you and Zack and the upcoming procedure. Your courage and bravery is inspiring, and sharing your fears with us gives me specific things to pray for. My son Jonathan’s heaven date is coming up (11 years on March 1st) so I am praying constantly for the strength to keep going. Sending you so much love….always
Oh Diane. Any time your name pops up I feel a spark of connection with you. I know you have shared many tender, precious details with me and I do not take that lightly. Thank you for showing up in such kind ways. I am blessed by you. And thank you for your prayers. A specific request we have is for housing during the 3-4 months I’m recovering from surgery. We are on a waitlist with Ronald McDonald house. There are many things to figure out before surgery, though I trust God has a good plan for us. xoxo
A friend sent me your post. I have a beautiful 5 year old daughter with Spina Bifida and we had fetal surgery in 2017. If you’d like to connect, I would be happy to share our story and walk this road with you. I want you to know that you’re in the darkest part of the journey and there is light ahead. If you’d prefer not to connect directly, i journaled on CaringBridge and would love if those words brought you comfort. There are also fantastic Facebook groups for parents for whatever repair option you may choose or qualify for. You’ve joined one of the fiercest tribes you never asked to be a part of – mama of a Spina Bifida warrior. You’re not alone. ❤️
Sara friend, thank you for your kind comment. I am amazed at the number of mothers who have reached out with a similar story. One of the things I’ve noticed they have in common is the joy they have over their life. That is so encouraging, so Christ-honoring. You are certainly a blessing. xoxo
Dear Maggie my heart goes out to .Youhave so much on you mind and heart and walking through it with Jesus so beautifully. What an example to others you are! I am asking the Lord to continue to bless and encourage you on this journey! I will be praying for housing. Love you so much Grandma
Oh Grandma, thank you for your kindness and encouragement and prayers. We feel them! You are a mighty prayer warrior, we are blessed to have you as a Saint on our side. We love you!
Maggie! A friend of mine posted your link, and I wanted to share with you a girl I followed through her son’s journey with the same thing – Lexie Thiery. He is now a happy and healthy little boy and doing all the things they said he never would!
Kelsey, yes! and Thank you! I have recently connected with Lexie and wow, such encouragement she has through God working in her life. xoxo
Thank you for sharing your heart and being vulnerable. I hope God will use your story and others that are going through something similar will be encouraged through your faith and testimony. Love and prayers from the Hubbels!
Brittany friend, it is always a delight to see your name and encouraging words. Thank you for the prayers. We have a few big requests right now. One is that I’d be approved for surgery in early April. The second is we’d find housing for the 3-4 months I’m recovering. We are on a wait list with Ronald McDonald house. God will work out all the details… I believe that! How can I pray for your precious family? xoxo
My brother and sister in law walked through this exact diagnosis 2 years ago with their second boy. My sister in law had the surgery at 24 weeks in Philadelphia and was on bed rest the remainder of her pregnancy, all through Covid. My sweet nephew John was born in January 2021. He is thriving now and a perfect example of God’s grace. I was and still am astounded by my brother and sister in law’s faith through their diagnosis, surgery, recovery, and his birth. I pray you feel peace and strength only God can give ❤️
Thank you, Sarah friend! God certainly has made a way for us during these last 9 weeks. He’s increased our hope, encouragement, love, and gentleness. Thank you for your thoughtful comment and for your prayers! xoxo
You are a blessing Maggie. Have followed you since I think before your first baby was born. Praying for you and baby boy often. Love from Tennessee
Oh Sarah, thank you so very much. Is there anything I can pray for for you/your family? xoxo
Hello! Our 3rd child, Kayla, was born with Spina Bifida. She is now 18 years old. I remember hearing the news of her diagnosis like it was yesterday. I felt so overwhelmed and scared and had so many questions for God. He was so gracious and kind to carry me through that season, when I felt my world had collapsed and I had no clue what the future would hold. We enrolled in a medical study back then to determine if post-birth or in utero surgery had better outcomes for Spina Bifida. At that time, we could not elect to have the in utero surgery. I was randomized to the post group, so Kayla had surgery to close the opening in her spine (L4) within 12 hours of birth. I struggled for awhile when we couldn’t have the in utero option but also found rest knowing that while it was a randomized study, it was not random to God.
It is quite the journey, filled with ups and downs. He is SO faithful to walk with us, each and every step. Our daughter is a joy to us and so many others. She’s graduating from high school this May, has a part-time job, volunteers in Sunday school and loves church. Yes, she has challenges but she’s so much more than Spina Bifida.
God’s grace truly is sufficient for each and every day. May you be overwhelmed by His goodness in the day, months and years ahead. Blessings!
Christine, friend. Thank you for all that you shared. Thank you for your honesty, gratitude, and sharing your faith in God. He really is all that we need. I believe that with all my heart. Is there anything I can pray for for your family? xoxo
My name is Ashley. My daughter Carter is 6 years old. She has Spina Bifida. We were also diagnosed ineutero. Those were some of the scariest months of our lives but let me tell you, she is such a light to everyone around her. She went in a year ago just before turning 5 for a huge surgery and the staff asked if she had a favorite song they could play as she fell asleep in the OR. Her favorite song is Waymaker. So an entire OR of surgeons and nurses got to hear of God’s goodness. Praying for you as you take the next steps
Ashley! What joy it has brought me to read a portion of your story. Thank you for sharing. And WOW I love that she requested Waymaker for her song. YES! xoxo
Thank you for this update, Maggie! Still praying.
I believe it! Thank you, Katie. xoxo
Thank you for sharing and please know I’m incredibly grateful to be able to pray with you and please know you inspire a deepening of my faith too. We’re with you and your husband and baby boy
All glory & honor to Him. Thank you, Kendra friend. xoxo
Maggie thank you for the letter of prayer you sent and know that I am thinking of and praying for you, baby and family…prayer has helped me in so many situations.
Amazing how you are still helping others when going thru so much yourself, stay strong ❤️
Thank you, Lisa friend. xoxo
Love you, Mags. xoxo
Maggie, thank you for sharing this with us. Because of your bravery, the family of God is surrounding you in prayer, interceding on your behalf. God will continue to remind you of that in the forthcoming days. Much love!
Thank you, Caroline. I would be a puddle of a mother without God’s provision and lovingkindness. xoxo
An English martyr, Hugh Latimer, when he was being martyred alongside his brother in Christ Nicholas Ridley, said this:
“Play the man, Master Ridley; we shall this day light such a candle, by God’s grace, in England, as I trust shall never be put out.”
The cross we’re bearing this summer is not martyrdom, but it’s heavy nonetheless. We were promised, when we joined Christ, that we would face hardship and I am happy we find ourselves spiritually prepared.
I am inspired, in times of trial, when those close to God are faithful through their fear – “playing the man” – knowing that God’s plan is greater than any of ours.
I love your courage, your love, your faith, Queen.
Thank you for sharing all of this, champ :)
Oh, Maggie, you don’t have to share this with us but thank you for welcoming us in so we can pray specifically for you and your family. I so don’t want to do the “well, I know this story…” but your words bring to mind 20+ years ago when friends received this same diagnosis. They traveled from NC to Vanderbilt for the first in utero surgery ever for spina bifida. That sweet baby girl is a very healthy adult now. ONLY GOD knows your family’s story. You guys are the best parents for this baby boy. Praying for you all!
Thank you for your kind words, Kristin. I am deeply encouraged by all the women who have shared their stories, or connected me with someone who has experienced this. Please keep praying for our family! xoxo
Thank you for sharing the most intimate details of GODS WIRK within you and your family. Your feelings are so acknowledged and the bravery that GOD gives you is more than life itself. We will be praying for your continued bravery th rough the journey of a lifetime. We know that GOD does not want us to fear as we are ALL his children and he does not want us to suffer. We will put our faith in JESUS that our trillant community will find a great home away from home for you and your family dURING these times. Stay tuned AND STRONG for GODS abundant answers!
Yes — amen! We are praying boldly for these same things. I am so encouraged by others who have shared or connected me with a friend who went through this same diagnosis. It’s really God’s lovingkindness to bring us together in this way. Please keep praying for our family! xoxo