What does it look like for our family to live biblically? My husband, Wayne, and I have two sons: A 15-year old named Gabe and a 19-year old named Micah. Our oldest son, Micah, has Tuberous Sclerosis Complex, a neurological disorder he was diagnosed with at 5 months of age. He is non-verbal, cognitively around 3-4 years old, and has some significant behavioral issues.
We have always tried to maintain as normal a life as possible (whatever that means) amidst the challenges of having a child with special needs. Other than being able to feed himself and being physically mobile, Micah requires care in every other area of his life. He has struggled with sleep intermittently throughout his life, but the last few weeks have been quite difficult. After a semi-annual doctor visit, his medications were adjusted, and those changes proved to do more harm than good. He has had more behavior challenges and great difficulty sleeping. He sleeps around 3-4 hours each night and had only one full night of sleep in the past three weeks. He cannot be left unattended, so my husband and I take turns being up with him for a few hours at a time. He roams around, watches preschool videos on his iPad, collects items, and sometimes gets into cabinets if we haven’t made provisions so that he can’t. Sometimes he is noisy, irritable or aggressive, other times he is very sweet and loving.
What I’ve learned is that it is ok to ask honest questions of God and to voice prayers of frustration and doubt.
So, how do we maintain a Christ-like attitude in the midst of having a young adult child with significant behavior issues and sleepless nights? Honestly, it isn’t easy, even though we know and believe that God is our provider. We don’t understand why He doesn’t answer a simple prayer for our son to sleep through the night. What I’ve learned is that it is ok to ask honest questions of God and to voice prayers of frustration and doubt. We see this all throughout Scripture. Psalms alone is filled with pleas of many crying out for God to hear, while also having the confidence and assurance that He does. I can be honest with God and plead with Him to help. Psalm 42:8 says, “The LORD will send His faithful love by day; His song will be with me in the night–a prayer to the God of my life.” (HCSB). Verse 11 adds, “Why am I so depressed? Why this turmoil within me? Put your hope in God, for I will still praise Him, my Savior and my God.” I believe that I can express my exasperation to God, but eventually I must come to the point of having hope and trust in Him.
Our younger son also has to deal with the challenges in our family, but he handles it well. Thankfully, he sleeps through all of the activity in the wee hours of the morning when his brother is awake. Gabe has grown up having to be a little more attentive than many others his age, and he is protective of his brother. We are striving to be intentional in teaching him how to study the Word of God, serve others willingly, and be compassionate toward others. I have seen him learn to be more empathetic just because he lives with a brother who is disabled.
Wayne and I are not living where we thought we would when we first married, nor doing what we thought we would be. We believed we were called to serve overseas in an area with little access to the gospel. Everything changed with our son’s diagnosis so many years ago. While we aren’t serving internationally, we do our best to live missionally as we serve in different roles with our local church.
I am grateful for the partnership my husband and I share and the support we give each other. Many years ago, we developed a rhythm of taking turns going to events and activities that our younger son was involved in, whether it was school functions or baseball and basketball games. There are a few wonderful people who watch Micah, so we can attend the worship service at our church, and then we take turns each week going to Bible study while the other goes home with him.
We have often told others we know God could heal Micah in an instant if He chose to. Though we have some tough times, we also have lots of joy and laughter with Micah. We continue to pray for him, for us to have patience and compassion, and that his life and ours would glorify God. The best way we can live biblically is to not lose heart in the tough moments and hours but to remember that God promises to never leave us.