Excerpt From A Day in the Life

CHAPTER ONE

A Day in the Life:
Chaos in the Home

A GLIMPSE INSIDE

Recently I received a wonderfully refreshing email from a new neighbor. She and her husband have several young children, and their youngest son has autism. Apparently he loves the outdoors and will occasionally “escape,” ending up in a neighbor’s yard or deck. They wanted the neighborhood to be aware of who their child is and to contact them immediately if we saw their child outside unattended. I appreciated this honest email, as it gave us a glimpse into their home life, making us somewhat aware of their reality. Somewhat.

I have a hunch, though, that this was only a glimpse, a small peek into what this family lives with 24/7. My neighbor’s email spoke of plans to get special locks and alarms for their windows and doors, as well as a medical ID for their child. It’s no small job being vigilant and attentive day in and day out, especially with several other children in their home to love and care for. There must be a high level of exhaustion and weariness that depletes them daily. I’m sure they often experience chaos in their home.

Chaos in the home is too often the reality of our families, especially if we have a child in our home struggling with a mental health disorder. A day in the life of many of our families would never make the cut for a Hallmark movie.

How well I remember those early years. Our son does not have autism, but his growing-up years were marked with chaos. I recently came across a journal from when Kyle was around ten years old. It reminded me of a typical “day in the life” with our son:

Another hard morning. I was up half the night with Kyle, trying to get him back to sleep. When will he ever sleep through the night? Steve and I are exhausted, and this morning was awful. I was cranky and irritable; cross with the kids. Kyle, as usual, was intent on annoying his sister and terrorizing our poor dog. He fought me over what to wear (WHY are these changes of seasons so hard???), he adamantly refused to eat breakfast and he relentlessly demanded he be allowed to walk to school an hour early (I refused, but it sure was tempting).

I was sapped by the time the kids left. As usual, I had a good cry on the way to work. Sometimes I almost wish I had a long commute—it’s about the only time I have a little peace and quiet. This morning was especially rough, and I feel like a failure as a mom. Why was I so crabby? What a horrible way to send the kids into their day. Then, to add salt to the wound, I decided to stop for a donut at the convenience store. On the counter was a koozie that said, “THIS ISN’T THE LIFE I SIGNED UP FOR!” I know it was supposed to be funny, but today, that’s exactly how I feel. Oh Lord, I’m so sorry! What is wrong with me? Help me accept and enjoy this life You’ve given me. I do love my children—each and every one. Help me love them well.

As I look back on those early years, I remember the guilt, the self-condemnation, the grief and the ever-present weariness. Driving most of those emotions was the relentless chaos. Families who have a child with a severe emotional disorder predominantly describe living in chaos. Oftentimes our children are able to hold it together while at school, but then let loose as soon as they get home. Frequently the outside world does not see what it’s really like in our homes. They don’t fully understand the daily challenges of living in such upheaval, never knowing what will set off the next explosion.

I remember having lunch several years ago with a group of moms whose children were reaching the end of their high school years. One mom lamented the passing of her son’s youth, wishing they were back in those early, innocent years. All the other moms agreed with her sentiment, and I suppose I, too, made some vague comment in agreement, lacking the courage to be honest. But in my heart I was screaming, “No! I would never want to go back to those early years!”   

When asked how they would describe the growing-up years with their child, many of the parents interviewed talked about the sheer chaos of those early years. The adjectives given were descriptive of the bedlam and pandemonium often found in their homes. Those years were depicted as stressful, remarkably difficult, beyond hard, extremely traumatic, volatile, scary, frustrating, bewildering. Parents talked of experiencing daily battles and daily strife; having to constantly be on their guard—locking doors and windows, as well as locking away scissors, knives and medicine; walking on eggshells; being hyper-vigilant—always waiting for the next explosion.

How well Liz and Jason understand this life-altering chaos. This young couple, after years of struggling with infertility and the challenges of the adoption process, was thrilled when they were finally able to welcome their daughter, Beth, into her new forever home. Beth was adopted as a toddler from an Eastern Bloc country. Jason and Liz fully expected the transition time to be stressful, but they were pleasantly surprised that initially things were quite calm in their home. They realized their daughter acted younger than her peers and had some unique quirks, but they knew this was not unusual for a child adopted from another country. By age seven, however, their family life was no longer calm or peaceful. Beth had begun displaying some pretty significant behavioral issues, pointing to early signs of mental illness. Liz was quite certain something more than cultural differences or immaturity was going on. She said, “A parent just knows. The experts don’t always catch it.” Over time, Beth was diagnosed with autism spectrum disorder, fetal alcohol syndrome and, later, paranoid schizophrenia.

As Beth progressed into her pre-teen and teenage years, Jason and Liz’s home life was marked by disarray and drama. Beth wanted friends, but she had no idea how to relate to her peers. She began to self-injure, frequently cutting herself. From time to time she would run away. She got into trouble at school. She lied more than she told the truth. She frequently lashed out against her parents.

Liz and Jason’s world was rocked when Beth, in a fit of anger, called the police and told them her dad was physically abusing her. That accusation ushered their family into one of the darkest seasons of their life. The stigma followed Jason for months. Liz said they not only struggled with having Jason’s reputation unjustly marred, they also feared having their younger daughter removed from the home because of Beth’s accusations. Jason and Liz acknowledge it took a long time for their family relationships to regain a semblance of normalcy, and even now scars remain.

Liz and Jason’s story is, unfortunately, not unique. Parents who have children with mood disorders and mental illnesses state unequivocally that all too often chaos reigns in their home. A simple parental “no” could set off a rage that lasts for hours. A change in their schedule could cause the day to erupt in upheaval. The wrong pair of socks or a scratchy shirt or a piece of toast unknowingly cut the “wrong way” are all potential minefields.

Kimberly can relate. Her daughter, Skylar, has a diagnosis of RAD—reactive attachment disorder. Kimberly shared, “Life with Skylar was extremely challenging, marked by daily battles. There was always another fire to put out. It was difficult to get even minimal cooperation, and I got so weary of the constant battle for control. It’s sad to admit, but I have almost no good memories of Skylar’s childhood years. Unfortunately, her adult years are off to a rocky start as well.”

Chaos into adulthood

The discord of chaos often follows families as their children enter adulthood, even if the child is no longer living in their home. Most parents who have a son or daughter living with severe, chronic mental illness have discovered this journey to be a marathon, not a sprint. Mental illness and all its issues does not end at age eighteen—not for the child, nor for the parents. The challenges many of our children face as they strive to live and function in the adult world often bring confusion and a whole new set of difficulties.

When asked about what causes the most chaos in their lives now, the parents of adult children who were interviewed openly shared their ongoing frustrations.

Linda struggles with the drama her young adult daughter, Anne, creates around her—especially over social media. “Anne has no filters in place and puts extremely inappropriate stuff online for everyone to read. I cringe when I hear the latest from her friends. I don’t understand why she does that. It’s embarrassing and frustrating. Anne has always been, and continues to be, very moody. I never know from day to day how she’ll respond or react to situations. We walk on eggshells around her.”

More than one parent commented on the squalor their children choose to live in. “Alan’s apartment is a pigsty,” lamented Suzette. “It’s grossly dirty to the point of being a health hazard. We’ve tried to help him keep it somewhat cleaned up, but he refuses to do anything for himself, even though he’s capable. It’s to the point we’ve decided to let it be. I’m making the choice to simply not go over there anymore.”

Many parents, no matter what state they live in, expressed their frustration with the mental health system. Sharon said, “For me, the chaos comes when dealing with the mental health system. There is a constantly changing parade of people who are supposed to be helping Leah. It’s so frustrating. Leah just gets used to one mental health provider and the game changes. It seems like we’re constantly having to make adjustments. Recently Leah’s psychiatrist retired, and the search for a replacement has been difficult. We live in a small state, and good psychiatrists are few and far between. We have so many other things demanding our time and energy, and I find it to be very draining to have to search so hard for adequate mental health care for our daughter. Then there’s the paperwork. Talk about chaos! It’s very cumbersome and time-consuming, and it all falls on me.”

Russ and Leslie shared that their recent chaos comes from the constant fight to get Jillian the treatment she so desperately needs. “It’s been a huge struggle,” said Russ, “to get help for our daughter. We are constantly having to advocate for better care, proper treatment and so forth. To compound the problem, much of the time Jillian refuses to take her meds. She’s unable to connect the dots of what she needs to do, so we find ourselves not only battling the mental health system but battling our daughter as well. Chaotic? Absolutely.”

Ray and Trina say their chaos comes from trying to sort out their son’s finances. “Our son Josh, now in his thirties, is a terrible money manager. His track record for holding down jobs is pretty spotty, so he never has much money. When a little money does come in, he either spends it immediately or someone finagles it away from him. He is constantly coming to us—wanting us to fix his finances, pay his bills or help him out of the latest mess. We struggle to differentiate between what’s enabling him and what is actually helping him. It’s a constant source of frustration for us.”

For other parents, the chaos they feel stems from worrying about their adult children. Meredith confided, “I have such an ongoing concern for Chance’s future. It’s as if there’s always a cloud on the horizon. I wonder if he’ll be able to keep his job, stay out of trouble, experience meaningful relationships and so on.”

Carolyn said much the same thing. “My daughter, Wendy, is always on my mind. Two years ago she walked away from us and now has nothing to do with us. I often find myself wondering where she is, what’s she doing, if she’s okay, etc. Even though the external, day-to-day chaos we used to deal with is gone, my ‘chaos’ now comes from the constant wondering, waiting.”

Sheer chaos. Daily battles. Overwhelming difficulties. When our world is darkened by the swirling chaos of mental illness and emotional challenges, how do we function? Is there hope for our families?

GAZING UP

Is it possible to find peace in the chaos?

Many hurting parents said it was precisely in this very darkness where they finally learned what it meant to trust and rely on the Lord. Their search for true and lasting peace, in the midst of overwhelming chaos, brought them to the heart of Jesus.

Marcy admits there still are times she struggles with feeling resentful about the constant turmoil brought on by their son, Jacob. “I’m so often exhausted, fearful for our other kids, fearful for Jacob. But because of Jacob’s severe emotional challenges, my husband, Travis, and I have learned what it really means to trust God. Jacob’s issues have prompted Travis and me to pray together more often. I’ve spent a lot of time searching and studying Scripture. I’ve seen and experienced how the Holy Spirit has given me wisdom and specific words in various situations with Jacob, as well as with our other kids. The Spirit helps me through each day. He is truly my encourager.”

Colleen said that even though their daughter, Maya, is no longer in their home, she’s aware that a new crisis is always just a phone call away. Colleen shared, though, that her relationship with God has grown much deeper and more intimate because of all they’ve gone through with Maya. “I find myself listening to Him and talking with Him often. I’m learning to intentionally allow Him to be in control. I don’t sleep a lot at night, so I use those quiet hours as my ‘God time.’ He is always faithful to give me what I need for each new day. He always seems to give me the right thing at just the right time.”

God is always faithful, even in the midst of turmoil. God gave me a beautiful image when our family was going through a very stormy season. We had recently experienced the traumatic death of my dad, and Kyle, who had been close to his grandpa, was struggling with extreme instability. One day, as I was quietly meditating on Scripture and spending time in prayer, God gave me a picture in my mind, reminding me He is always at work, even in the storms of life.

In my mind’s eye, I saw a tree, bent over and battered in a storm. The wind was raging and the rain lashing down. I came to realize I was that tree and the storm was a symbol of the tumultuous chaos our family was currently living in. But I was aware that even though the tree was being pummeled and was on the verge of toppling over, it was still standing. The trunk was not broken and the roots were secure, anchoring the tree solidly in place.

Jesus reminded me this storm was serving to make my roots grow stronger…deeper. Then He whispered that He would not allow this stormy season to destroy me. He reassured me that when the time was right, He would say to the storm, “Peace! Be still!”

When our outer world is being rocked and we are spinning in the chaos, it’s important to quiet our inner world. Jesus longs for us to sit in His presence and allow Him to calm us. He is here, even in the raging turmoil. He might not immediately calm the storm of our circumstances, but He will gently speak peace to our hearts. As a beautiful praise song expressed so well, “Sometimes He calms the storm, and other times He calms His child.”[i] Invite Jesus into your chaos and allow Him to calm you. He is not panicked or intimidated by the raging storm.

“Be still and know that I am God” (Psalm 46:10, NIV).

Additional Scripture to meditate on

Remember who created you…? Who shaped you…? See, you have nothing to fear. I, who made you, will take you back. I have chosen you, named you as My own. When you face stormy seas I will be there with you with endurance and calm; you will not be engulfed in raging rivers. If it seems like you’re walking through fire with flames licking at your limbs, keep going; you won’t be burned. Because I, the Eternal One, am your God. I am the Holy One of Israel, and I will save you. You are special to Me and I love you. (Isaiah 43:1-4a, VOICE)


Now may the Lord of peace Himself grant you His peace at all times and in every way [that peace and spiritual well-being that comes to those who walk with Him, regardless of life’s circumstances]. The Lord be with you all. (2 Thess. 3:16, AMP)


Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. (Phil. 4:6-7, NIV)

A prayer for those living in chaos

Lord Jesus, we sit in Your arms, breathe deeply and invite You to come calm our souls. Today, chaos is swirling all around and it feels like life is out of control. Tempers are hot, patience is thin and darkness threatens to gain the upper hand. It feels as if we are being slammed against the rocks—the waves are crashing over us and we can scarcely catch our breath. So, Lord, we ask You to climb into the boat with us now and take over the helm. Please calm the storm, as only You can. And Jesus, calm us, as well. We pray for Your perfect peace to wash over us, quieting the turmoil. Thank You for loving us so completely and letting us know how special we are to You. We pray in the Name of the One who still calms the storms. Amen.

GOING DEEPER—GETTING PERSONAL

1. Can you identify with the words, “This is not the life I signed up for!” Why or why not?

2. Taking into account your child’s age and diagnosis, what causes the most chaos in your life today? Or are you experiencing a season of calm?

3. Can you recall a time or an incident in your life when you clearly felt the peace of Christ calm your storm?


[i] “Sometimes He Calms the Storm,” recorded by Scott Krippayne, written by Kevin Stokes and Tony Wood, 1995, Universal Music.

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