Even the Darkness is Not Dark to you
Many people wonder about the physical disability of our youngest daughter, Brie. While some feel comfortable asking her about her condition, others do not. However, I want to give glory to God about the amazing way He brought her into our lives, and how He has caused her to be “born again to a living hope.” (I Peter 1:3-4)
If I say, “Surely the darkness will overwhelm me, And the light around me will be night,” Even the darkness is not dark to You, And the night is as bright as the day. Darkness and light are alike to You.
For You formed my inward parts; You wove me in my mother’s womb. I will give thanks to You, for I am fearfully and wonderfully made; Wonderful are Your works, And my soul knows it very well.
My frame was not hidden from You, When I was made in secret, And skillfully wrought in the depths of the earth; How precious to me are your thoughts, O God! How vast is the sum of them!
Tim and I walked into the radiology department with Hannah (8), Bethany (7), Daniel (4) and Carissa (3) each with their backpacks full of activities to keep themselves busy in case the appointment lasted longer than expected.
After I was settled, the children entered the room, and sat very still watching the image on the screen. Tim asked the kids, “Do you see the baby’s head?” or “Do you see the baby’s arms?”. Daniel had been praying for a brother, but the gender could not be detected. I had asked the ultrasound technician several questions, but she was peculiarly silent. She abruptly walked out of the room and then back in again, asking if the children would wait back in the waiting room. I had thought she was bothered by the kids being present, and I was a bit offended by that. However, when she came back in with a box of kleenex and said the radiologist would be in momentarily, I had no idea what was happening.
It had been an unusual pregnancy for me. The first four months had been characterized by fatigue, nausea, and pallor. I just felt sick all the time and slept far too much. I had sensed that something wasn’t right with the baby. I was too small. All the other children had been born 8 1/2 lbs and heavier. I didn’t feel the baby kicking, only slight flutterings and movements. The 10 week visit showed a strong heartbeat, so I couldn’t reconcile my thoughts. I had told my women’s Bible study that I thought something was wrong, but one friend said, “Tina, don’t say such things!”. I had no proof that something was amiss, so I kept quiet. What else could I do, but pray?
The doctor explained that our baby was missing most of her vertebrae (T10 and lower) and spinal cord (below C5). He thought she most likely had Amniotic Band Syndrome which is a broad term for a group of congenital abnormalities that occur when bands of amnion (the inner lining of the amniotic sack or "bag of water") peel away from the sack and attach or wrap around parts of the baby's body, disrupting normal development. The bands, described like “rubber bands” constrict blood flow and affect the areas which they have constricted. You can read more about this here.
At the time the radiologist told us that he thought that parts of the baby’s body had been attached to the amniotic sack by the amnion bands making it impossible for the baby move; thus, explaining why I couldn’t feel much fetal movement during the pregnancy. He then recommended termination of the fetus.
He told us, “Not only will your baby be severely deformed, but will only survive while inside you. Because the spinal cord is not long enough to support the diaphragm, the baby will not be able to breathe independently.”
I Will Give Thanks to You
My head was spinning. It was surreal. My first thought was, “Now I will see how real my Christianity is”. This was by far the hardest trial I had encountered up to that point in my life. I had been rejected (for a time) by family because of my Christianity, I had been even asked to leave the residence at the Catholic College I had been attending for having Bible Studies in my dorm room, but this trial cut to the deepest part of my heart. It was my child. I was sick to my stomach.
Tim and I believed very deeply in the sovereignty of God (and still do). We knew that God doesn’t make mistakes,and that He ordained this particular circumstance in our lives at the perfect time.
Doesn’t Daniel 4:35 say, “But He does according to His will in the host of heaven; And among the inhabitants of earth; And no one can ward off His hand or say to Him, ‘What have You done?”
Or Isaiah 46:10, “Declaring the end from the beginning, and from ancient times the things that are not yet done, saying, My counsel shall stand, and I will do all my pleasure.”
The refiner’s fire was hot during this season of our lives. Tim’s job had been uncertain for months because of down-sizing at his company and two weeks after we found out about our baby, Tim’s grandmother, who had raised him for 8 years, had a stroke and died a month later. These were difficult days.
We sent the ultrasound image to university of San Francisco to see if there was an in-utero surgery that could be done to remedy the baby’s condition. The written answer came back to say, “inconsistent with life”. We knew we needed to pray for God to do something REALLY BIG. People at our church and all over the country had contacted us with prayers for our baby. I received letters from old friends (before social media) saying how they were praying. One said he would wake up in the dark of the night burdened to pray, and so he did. Tim and I understood what people meant when they said, “my heart aches”. There was physical pain in my heart that lasted for weeks.
We waited 8 weeks before we went back to the radiologist. I had felt stronger movement, and I sensed strongly that the baby was not constricted by amniotic bands, but now moving freely. I could feel her head at the top of my belly, and would rub it often and talk to her. Indeed, she wasn’t attached, and God had been answering prayers.
When we finished the 28 week ultrasound, the doctor was very pessimistic about her survival. He even suggested I have a vaginal delivery so that “nature could decide if she would make it”. I was so angry that I did not speak. Praise God that Tim was there to tell him about God in such a kind way. “The Lord gives and the Lord takes away. Blessed be the name of the Lord” (Job 1:21). He told him, “We will give her the same opportunity as any other child”. So we had planned a C-section on June 27th, 2001 with specific medical orders to be followed.
My Soul Knows It Very Well
So much happened during those weeks. I spent each day systematically pouring over the Psalms recounting the goodness of the Lord. There were good days, and there were very hard days. I memorized Psalm 27 during those 20 weeks because I needed to renew my mind with the truth of God.
The Lord is my light and my salvation; Whom shall I fear?
The Lord is the defense of my life; Whom shall I dread?
For in the day of trouble He will conceal me in His tabernacle;
In the secret place of His tent He will hide me; He will lift me up on a rock.
Hear, O Lord, when I cry with my voice, And be gracious to me and answer me.
When You said, “Seek My face,” my heart said to You, “Your face, O Lord, I shall seek.”
Do not hide Your face from me,
Do not turn Your servant away in anger; You have been my help;
Do not abandon me nor forsake me, O God of my salvation!
For my father and my mother have forsaken me, But the Lord will take me up.
Teach me Your way, O Lord, And lead me in a level path Because of my foes.
I would have despaired unless I had believed that I would see the goodness of the Lord In the land of the living.
Wait for the Lord;
Be strong and let your heart take courage; Yes, wait for the Lord.
I had called on June 25th to find out about burial arrangements. I was back to crying that day. I had also received a quilt from a friend who had hand-made it for the baby’s service in case she did not live. On the night of June 26th, 2001, some elders from our church came to our house to lay hands on me and pray for our family. Truly, I needed to hear their spiritual strength through their deep trust in our great and sovereign God. I think I cried the whole time that everyone prayed. The only reason I slept that night was because I had been so tired from crying.
The next morning we were at the hospital at 6am for the scheduled C-section. Tim asked the unbelieving OB/GYN if he could pray aloud for her and for us. She agreed.
I was still crying. I just couldn’t seem to stop the tears. In previous weeks I had asked the Lord to not allow the baby’s face to be deformed whether she lived or died. Because if she died then if would make it possible for the children could see her and say, “goodbye”. If the baby lived then people would have an easier time accepting her. I realized how awkward people feel around disabled people, but if she had a beautiful face and happy smile, it would make it so much easier for us to strike up a conversation about her and give God all the glory for His amazing miracle.
With a medical team standing by in the NICU, baby Gabrielle Hope was born at 5lbs, 6oz. I couldn’t see her at first, but Tim could.
The first thing I asked, “Is she okay?”
“Yes”, Tim said. Then I heard her crying. What a sweet, sweet sound.
Through the tears I asked, “What about her face?"
“She’s so beautiful, Tina.”
“What about her body?” came the next question.
“Her legs are crossed like she’s sitting indian style" came the next answer.
She was breathing on her own (miracle #1) without the help of any machines and her face, and upper body not deformed (miracle #2). She was whisked away to the NICU while I was stitched up. Tim went with Brie. Tim said she cried the whole time she was in NICU. I don’t remember how long it was before they wheeled me down, but there she was under the heat lamp still crying. I put my hand on her head and talked to her and immediately she recognized my voice and stopped crying! My sweet little girl. It was my turn to cry.
The medical team ran tests upon tests, but apart from her physical deformity, she was faring marvelously and released her 48 hours after she was born. The doctors in Boise had never seen anyone born with her condition. All unchartered territory with no explanations.
One neurologist said, “I can’t explain why she is breathing with such a short spinal cord. It seems that there are nerves helping her diaphragm function on its own.”
“You don’t need to have an answer. I already know it is God sustaining her for His purposes.” I replied.
Skillfully Wrought in the Depths of the Earth
Caudal Regression Syndrome
Caudal Regression Syndrome is a broad term for a rare complex disorder characterized by abnormal development of the lower (caudal) end of the spine. The spine consists of many small bones (vertebrae) that collectively form the spinal column.
The spinal column is generally broken down into three segments:
the cervical spine, consisting of the vertebrae just below the skull;
the thoracic spine, consisting of the vertebrae in the chest region;
and the lumbar spine, consisting of the vertebrae of the lower back
A triangularly-shaped bony structure called the sacrum joins the lumbar portion of spine to the pelvis. The sacrum consists of five vertebrae fused together. At the end of the sacrum is the tailbone (coccyx). A wide range of abnormalities may potentially occur in infants with caudal regression syndrome including abnormal development (agenesis) of the sacrum and coccyx and abnormalities of the lumbar spine. More severe malformations may occur in some cases. Abnormalities of the lower spine can cause a variety of additional complications including:
disruption or damage of the end of the spinal cord may occur, potentially causing urinary incontinence
additional anomalies of the gastrointestinal tract, kidneys, heart, respiratory system, upper limbs and upper portions of the spine can also occur
The exact cause of caudal regression syndrome is unknown. Both environmental and genetic factors are suspected to play a role in the development of the disorder.
In the first few months, I dealt with a sadness, a sense of loss for what my daughter would never be able to experience in her life. Two other baby girls were born within a week of Brie. Would I be sad when they began to crawl? I would be sad all over again when they took their first steps? A time of mourning accompanied with much prayer defined those first few months. It seemed that one morning I woke up and God lifted the sadness never to return. From the time Brie could understand, Tim would tell her, “God knit you just right! You are just how God wanted, made perfectly, with no mistakes”. He would tell her Psalm 139 often.
Within 4-6 months, Brie was sitting up, by one year she was talking and making friends at the grocery store with her bright eyes, big smile and beautiful face. God would always receive the glory for the miracle of Brie’s life. But even more importantly, God would receive the glory for the work He was doing in her heart to cause her to be born again.
How precious to me are your thoughts, O God! How vast is the sum of them!
In 2008, around the age of 7, Brie came to saving faith in our Lord, Jesus Christ. In 2009, she underwent public water baptism. Here is her testimony of the Spirit’s work in her life:
I am 8 years old and I have been raised in a Christian home. From the time I was little, my Dad read to me Bible stories or from the Bible when I was old enough. I learned that God alone is the all powerful, Creator, King who must be obeyed. I also learned that ALL have sinned deserving the punishment of hell. I learned that Jesus Christ will judge his enemies and save his friends through his death on the cross and resurrection from the dead. I knew that all must repent from their sins believe in Christ to be saved. This was the gospel outline that my dad taught to our family.
I didn't really believe or have faith. I knew that if I didn't believe I would go to Hell! In fact, I was really afraid I would go to Hell. My life before Christ was miserable. I would lie to my parents and get angry and say unkind words especially to my brother and sisters.
One day my sister said she thought that I was saved but I wasn't sure so I asked my mom if I were a Christian. She said, "How do you know if you're Christian? I said I'm not sure. So my mom told me to repeat the gospel outline that I had learned. My mom asked me if I had truly turned from my sin and asked Jesus to forgive me. I said I had not but I wanted to have faith and believe that Jesus Christ died for me. So I prayed for Jesus to forgive me of all my sins and my rebellion against him.
God has changed my life in so many ways. I have prayed so much lately that the Lord would bring me through my surgeries. He has help me through all of them. Now I am reading his word without being asked by my parents because I want to. I am also meditating and memorizing the Scriptures. This will help me to share the gospel with other people and these verses that I memorizing to tell people the verses so they can understand God's word better the Lord has blessed me with faith, love, and kindness he has blessed me my whole entire life and I can't wait to see him in heaven so I can praise him forever.
Brie had experienced some medical trials several months after her profession of faith. After a procedure to help close up an open wound, she contracted Methicillin-resistant Staphylococcus aureus (MRSA) which is a type of staph bacteria that has become resistant to many of the antibiotics used to treat ordinary staph infections. Seven days after the out-patient surgery, she was admitted and received the strongest anti-biotics possible. The flesh-eating bacteria had stripped away the flesh clear down to her bone, requiring almost two months in the isolation ward. Those were tough days. Brie has often looked to that time as a testing of her faith. Yet, she saw her increase of trust during very painful and scary procedures. God revealed His faithfulness as He sent members from our church body to pray with her, play games with her, and witness to the nursing staff.
In 2019, Brie graduated Burbank High School where she was a witness for Christ after 9 years of being home-schooled. She is confident in the power of the gospel not only to save her, but sanctify her as she walks faithfully with her Savior. As a family, we pray regularly for her opportunities to share the hope she has in Christ with others. Small group discipleship with other girls her age is an important aspect of her spiritual growth along with daily Bible reading and prayer. She also serves in an outreach at a local rehabilitation center that is located next to Calvary Bible Church. Her desire to love Jesus is such an encouragement in my life and to others.
In closing I feel it necessary to say that Brie's siblings have been a vital part of who she is today. Many people have commented to me, "Brie is so comfortable in her own skin". This is, in large, to the impact and influence of her brother and sisters in her day to day life. God knew that Brie should be the caboose on this Carns Train! She has been treated as normal as a paralyzed kid can be treated. She has been thrown around on the trampoline, teased, tickled, and told to push her own dinner plate to the kitchen. They have also modeled to her a love for the Lord and a desire to serve the local church. She is so blessed to have Hannah and Michael (left), Bethany and John (center), Daniel (upper right), and Carissa (lower right) in her life.
When I first heard the news that I would have a physically challenged daughter, I couldn't imagine how life would be for our family. Now, 18 years later, I testify of God's utter goodness upon our family: He is a wise and loving God who is conforming each of us to the image of His dear Son, Jesus Christ.