It has been awhile since my last blog. The last few weeks have been difficult. Our son, Zach, had an MRI of his brain done to rule out a brain tumor that might have been causing problems with his eyes. While we were thrilled there was no brain tumor, what they found, or didn’t find, sent us to our knees. We learned that Zach never developed an important connective pathway in the brain called the corpus callosum. It is a thick structure composed of over 200 million nerve fibers and is responsible for the communication between the right and left hemispheres of the brain. Since it never developed while he was in my womb, it is literally absent. That means Zach has a rare condition called agenesis of the corpus callosum (ACC). We have learned a great deal about this condition in the past few weeks and you can click here or here to learn more. God created our brains with an amazing ability to compensate, so there is an extremely broad spectrum of manifestations for this particular condition. Some children born with this are severely mentally retarded, while others have no problems at all. However, many kids with ACC have difficulties with social development and that is our primary concern with Zach. Though he has no academic or motor developmental delays, he does show some immaturity socially compared to his peers. He seems to have a lack of self awareness and difficulty understanding the perceptions of others; knowing this diagnosis helps to explain much of that.
One of the most concerning things for us is that the social challenges may become more problematic as he gets older. When I first learned of the abnormality, it hit me like a ton of bricks. Instead of running to the word of God as I should have, I ran to the internet. I read things like “they fall behind their peers in social and mental functioning as they approach adolescence”, and “they have challenges with peer interactions and relationships that increase with age and complexity of the social situations”, and “becomes more evident with age.” …..and I sobbed and sobbed. All I could think about was all the things Zach might miss out on. All the “what ifs” were endlessly reeling in my mind. What if he doesn't have any friends? What if he never gets married? What if he experiences the emotional pain of not fitting in? What if he can never truly come to a saving knowledge of Jesus Christ? For those first few days, every time I looked at Zach, I cried over the loss of the normalcy I had hoped for his future. I remember swallowing back tears as I read bedtime stories to my children with a lump in my throat. I would stifle the tears until the kids were all tucked in bed and then have one of those guttural cries in the arms of my husband.
Since then, God has spoken to my heart and changed my perspective in an amazing way. The Lord has faithfully used the healing balm of His word and the koinonia of the body of Christ to speak truth over me. I realize this affliction is nothing compared to what others have to bear, but for me it has been another valley in which the lovingkindness of the Lord has been magnified. He has shown me so much through this trial and I must speak of His faithfulness.
You have turned for me my mourning into dancing;
You have loosed my sackcloth and girded me with gladness,
That my soul may sing praise to You and not be silent.
O LORD my God, I will give thanks to you forever.
Psalm 30:11-12
I will sing of the lovingkindness of the LORD forever; To all generations I will make known your faithfulness with my mouth. Psalm 89:1-2
I am blessed to be married to a godly man. As he dries my tears, Dave faithfully reminds me that this life is but a vapor, and that we are blessed to have this new struggle to endure - that it will draw us closer to one another and closer to the Lord. He reminds me to have an eternal perspective, not a worldly one. If we view this circumstance through the lens of a follower of Christ, we have reason to rejoice.
Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing. James 1:3-4
I would be lying if I said I no longer slip into the sin of worry and unbelief, but the Lord has literally turned my tears into laughter and my fear into trust. Now, instead of looking at Zach and thinking “what if ”, I more often think “what a miracle, thank you Lord.” Instead of snapping at Zach in anger and impatience when he misbehaves, I more often stop and calmly respond to him. Though it has helped me to be a better mommy and to love Zach in a way I might not have otherwise, the greater lesson has been faith growing as it has caused me to consider what it is I put my hope in. Where is it that my treasure truly lies and what do I hold most precious? I have imagined the worst case scenarios with Zach, but it has caused me to remember that my hope is not in health or even happiness. My hope is in Christ alone, who is far more concerned about my holiness than my happiness. It is not because Zach has hope for a normal life that God is good. Even he faces a life time of social challenges, God is still good and His grace is still sufficient. How many believers are faced with the struggle of a severely disabled child or even the death of a child? Is God not still gracious and faithful then? Though the grace of God is demonstrated in this world, the greater grace is demonstrated in the sacrifice of His only Son, whom He sent to die in my place, paying the ransom due for my sin, so that I might have eternal life and know Him.
But God demonstrates His own love in that Christ died for us while we were yet sinners.
Romans 5:8
Yes, our little Zach is a walking miracle. Things could have been much worse. They could have found a brain tumor, he could have been severely mentally disabled, but the worst thing would have been going through this trial without knowing Christ. The mother of an infant daughter battling cancer put it much better than I ever could:
“The worst thing possible, however, would be if we didn't have a personal relationship with the Lord Jesus Christ. There would be no point or purpose for this trial. There would be no growth or peace or protection. God is good. He makes no mistakes and He only does things that will help us grow in our walk with Him. We are continually singing His praises as He works in us.”
For those of you wondering if we told Zach, we did. We used as few details as possible, but told him that God made his brain a little different and very special. To which he replied,
"Okay... is the French toast ready yet?"
