If you cling to your life you will lose it; but if you give it up for me, you will find it.
– Matthew 10:39
Jesus calls us to abandon our own agendas, what we have deemed will please and fulfill us, so that we can embrace the kind of quality of life that only he gives. This is not about adding Jesus to the life we are living. This is about making Jesus our life. This is about putting our plans for our life to death so that the abundant life he offers has room to take root and grow. And death is always painful…. If you cling to your own plans and desires, you will never discover the freedom and joy found in losing your life for Jesus.
– The Book of HOPE by Nancy Guthrie
Yesterday we sat in the ultrasound room for a second time waiting for the results of the scan of Baby Mercy. I won’t share every detail of the appointment, but it was a long and hard. The results were discouraging. The doctors believe that Baby Mercy has Partial Agenesis of the Corpus Callosum meaning the fibers that connect and communicate between the two hemispheres of the brain didn’t completely form. This affects about 1 in 4000 babies, is congenital, and aside from God, cannot be healed. (More about possible implications at the bottom if you are interested) To say I was devastated is an understatement. Partially because I initially misinterpreted what the doctor said to us. She said, “Your results were clear.” I was so focused on the ultrasound that I thought she was saying that our baby’s corpus callosum was whole. The “clear results” were actually blood work results that I wasn’t really expecting to have this soon (and wasn’t really concerned about, as I expected them to be clear.) Anyway, I went from very high to very low in the matter of a minute.
I wish I could say I immediately remembered and clung to the truth that I had been telling myself for the past couple weeks. I didn’t. We drove home, and I felt numb. My mind raced trying to process the possible implications. I got frustrated at a dear friend who tried to encourage me towards truth. I got frustrated at my sweet mom who tried to get me to hope for the best. I got frustrated at my clingy children that needed a little more attention that I felt I could give. I felt overwhelmed.
Today I have a better perspective, thankfully; not that I feel equipped for what may lie ahead (I don’t), but I feel less fearful. No matter the outcome, God is/will use this to help us die to our own plans and place them on the altar, so that we can have more of Him, and have the better life that he has planned for us.
I found this hymn while reading and listening to music today. It reflects my heart more beautifully than anything else I could say.
We ask that you continue to pray for baby Mercy. I believe that God can continue to heal this part of her brain.
– Pray for healing (I go back in 6 weeks for another anatomy scan).
– Pray that no other birth defects would come up. As of now, this is isolated and that is very positive!
– Pray that we will not be anxious for the future, and that our hope and trust will remain in God’s love and care for us and for Mercy.
– Pray that Clayton and I will draw closer to God and rely on Him together.
– Pray that God will direct our steps in the next months and years as we make decisions about care for Mercy.
– Pray that Mercy will be a little girl who loves God with all her heart and finds her identity in Him.
– Pray that she will love and touch others lives.
– Pray that Haven and Titus will have a deep empathy for Mercy (and others b/c of Mercy) and that they will have a close-knit relationship to her.
– Pray that Haven and Titus will feel the love and attention they need, even in times of concern and stress.
The Best Encouragement
Thank you to everyone who had reached out to express love towards us and towards Mercy. Your thoughtfulness has been healing to my heart. These are some of the things that encourage me most.
– A simple, “I’m so sorry/I love you/I’m here for you”
– Text, call, email, write, say you are praying
– Verses that have spoken to you in hard time.
– Music that encourages you (music is one thing that encourages me deeply)
– Your testimonies of how God has brought you through a hard time.
The implications of this disorder are a wide spectrum and something that can not be predicted. It’s a “wait and see” kind of thing. Every child with this birth defect is different. Effects could be subtle to severe. The not knowing is one of the hardest parts.
The following is from the website for The National Organization for Disorders of the Corpus Callosum:
• What are the common developmental problems that may occur with disorders of the corpus callosum?
Behaviorally individuals with DCC may fall behind their peers in social and problem solving skills in elementary school or as they approach adolescence. In typical development, the fibers of the corpus callosum become more efficient as children approach adolescence. At that point children with an intact corpus callosum show rapid gains in abstract reasoning, problem solving, and social comprehension. Although a child with DCC may have kept up with his or her peers until this age, as the peer-group begins to make use of an increasingly efficient corpus callosum, the child with DCC falls behind in mental and social functioning. In this way, the behavioral challenges for individuals with DCC may become more evident as they grow into adolescence and young adulthood.
• Behavioral Characteristics Related to DCC
This is an overview of the behavioral characteristics which are often evident in individuals with DCC.
- Delays in attaining developmental milestones (for example, walking, talking,reading). Delays may range from very subtle to highly significant.
- Clumsiness and poor motor coordination, particularly on skills that require coordination of left and right hands and feet (for example, swimming, bike riding, tying shoes, driving).
- Atypical sensitivity to particular sensory cues (for example, food textures, certain types of touch) but often with a high tolerance to pain.
- Difficulties on multidimensional tasks, such as using language in social situations (for example, jokes, metaphors), appropriate motor responses to visual information (for example, stepping on others’ toes, handwriting runs off the page), and the use of complex reasoning, creativity and problem solving (for example, coping with math and science requirements in middle school and high school, budgeting).
- Challenges with social interactions due to difficulty imagining potential consequences of behavior, being insensitive to the thoughts and feelings of others, and misunderstanding social cues (for example, being vulnerable to suggestion, gullible, and not recognizing emotions communicated by tone of voice).
- Mental and social processing problems become more apparent with age, with problems particularly evident from junior high school into adulthood.
- Limited insight into their own behavior, social problems, and mental challenges.
These symptoms occur in various combinations and severity. In many cases, they are attributed incorrectly to one or more of the following: personality traits, poor parenting, ADHD, Asperger’s Syndrome, Nonverbal Learning Disability, specific learning disabilities, or psychiatric disorders. It is critical to note that these alternative conditions are diagnosed through behavioral observation. In contrast, DCC is a definite structural abnormality of the brain diagnosed by an MRI. These alternative behavioral diagnoses may, in some cases, represent a reasonable description of the behavior of a person with DCC. However, they misrepresent the cause of the behavior.
Few more possible implications
Other characteristics sometimes associated with callosal disorders include seizures, spasticity, early feeding difficulties and/or gastric reflux, hearing impairments, abnormal head and facial features, and a mental handicap.