Kelley Chose the “Yes” of Faith

As every mom has, I have been faced with some difficult decisions. And with five children, three with special needs, one might say my faith has been flexed. Several early life experiences contributed to my learning to be a caregiver and advocate. One season in my life presented extraordinary challenge to the trust I have in my Savior. 

As the oldest child in my family, I developed a nurturing protective spirit with my siblings. I also grew up with a father who was a veterinarian. He gave me perspective of the emotions and dilemmas I would later face as an adult.

By the time I was ten years old, I was feeding and caring for five orphan dairy calves. I would arrive at the dairy with my father, and the farmer would announce that an orphan calf would cost too much to feed out. This was completely unacceptable to me. So, I would commence pleading with my father to let me care for the calf. Usually, we had a baby calf in the floorboard of my dad’s truck on the trip back to the clinic. My mom would roll her eyes and sigh, “not another one.”

My father would talk to me about anatomy, chemistry, and critical thinking. I remember watching him do exploratory surgery on his patient, working out loud through his process of elimination. This instilled a passion for research and learning. My core values expanded to include a wider view of the world and, by the age of 10, I had simultaneously experienced a spiritual awakening.

I married young at the age of 20. I had my first child a year and half later. We welcomed our second child twenty-one months after that. My husband was working at a wonderful church as a youth pastor. We owned our first home and we all enjoyed good health. I’ve come to appreciate the saying,” health is wealth.” We found out we were, unexpectedly, having another baby.

When our third child, Conley, was born, we immediately knew something was very wrong. He was not breathing. Nurses and doctors worked feverishly to save him. It was almost as if it was happening to someone else. I couldn’t believe it was happening to me. For the first time in my 24 years, I was completely helpless and terrified.

I remember finally going to meet Conley the next day. Tears fell uncontrollably as I stared at this infant with tubes and monitors. I lived at the Dallas Ronald McDonald House for three and a half months, seeing our older children on weekends. I knew my life had forever changed in the blink of an eye. 

Tears fell uncontrollably as I stared at this infant with tubes and monitors.

Conley went on to require frequent hospitalizations and over twenty-five surgeries and procedures. I wrestled hard, asking God “Why?”

I underwent a procedure to ensure our family was complete. However, God had other plans. Almost eight years later, I discovered I was pregnant with our fourth child.

About eighteen weeks into my pregnancy, we learned there were major complications. I was pressed to have an abortion. The influences and morals instilled in me could not justify an abortion. I deeply believed that God, like a maestro, was creatively composing every life event.

Much like during the nightmare of Conley’s birth, our fourth son, Camron’s, birth required the immediate work of a medical team to save his life.

For the next five months, I lived in a hotel in San Antonio across from the hospital. We had moved to Austin a month prior so Conley could attend Texas School for the Deaf. My husband lived in Austin and commuted to work in San Antonio. I stayed at a hotel in San Antonio with our older sons, to allow them to finish their school year. I vividly remember the day I found out Camron’s diagnosis and prognosis. It was grim. He was profoundly deaf and blind with a feeding tube and tracheostomy at age three weeks.

As I left the hospital and approached the bus stop, I sat on the bench watching the buses come and go. I was mapping out my plan to step in front of a bus.

As my spirit warred inside of me I finally acknowledged and grasped the promise of an inherently good God. Just like Job, God blessed the later part of Job’s life more than the first. He said, will you still love me through these circumstances? Job’s response in faith was “Yes.”

I chose “Yes” that day.

I have learned through these experiences that God is the Maestro of my life. Sometimes he calls me to rest. Other times I am called to action. In all things I understand He is the center of every life event, and only He understands the intricacies of my ultimate purpose.

God continues to connect the dots in my life, through advocacy, service, and community. One of my favorite Bible verses, encompasses both my spiritual and world view:

Work willingly at whatever you do, as though you were working for the Lord rather than for people.

Colossians 3:23

RELATED: Community Story (Camron’s Birthday)


Kelley Cagle, beautiful woman and writer

Kelley Cagle is a freelance writer and special needs advocate with a passion for mentoring young moms who have children with special needs. Kelley shares from her own experience as the parent of children with disabilities. Kelley has five sons. Two of her children have CHARGE Syndrome, a micro deletion affecting a multiple body systems and organs. Both boys are deaf-blind and on the Autism spectrum. Kelley and her husband Chris have been married over 26 years and live in Texas with their two youngest boys.

Kelley’s husband, Chris, shares a Community Story celebrating life, faith and fellowship.

Tips to Help Deep Thinking Caregivers Find Their Sweet Spots

This is the fourth article in a series exploring what puts family caregivers in their “sweet spots” when supporting a family member with special needs. Today we’re looking at some challenges and opportunities for caregivers who think deeply.

Do you have a thirst for knowledge? Do you have a strong capacity to thoughtfully weigh a variety of options when you’re at a crossroads? Perhaps you’re the one in the family who researches therapy and treatment options. Do you have a helpful critical eye when it comes to reviewing details on your child’s Individualized Education Plan (IEP)? When someone suggests it’s time to start thinking about guardianship or future planning for your loved one with special needs, are you already two steps ahead starting the file with background information?

I’m a thinker so I can appreciate the tension you may live in. Your thoughtful and pragmatic ideas are of great value to your complex family. But you may have trouble sleeping at night!

Deep thinking people have a wonderful coping tool built right into them by God. Their moods and anxiety can be shifted by their thinking process alone. But that means it’s important to stay on guard about the tone and focus of your thought life. A great motto from scripture for the deep thinker is found in Philippians 4:8, which says:

“Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise.”

When you are raising a child with disabilities or caring for a loved one with complex needs, there is always plenty to think about. There are decisions to weigh, strategies to plan, causes to support, and perspectives to consider. It’s wonderful to have someone on the caregiving team who has the capacity for keen observation and analysis. You may even be energized by serving the caregiving team through a role of that nature. But you may also feel prone to anxiety if forced to bear this role alone or under pressures of deadlines.

If you’re someone who spends a lot of time “in your head,” try to have some quiet time alone for positive thinking every day. This may feel impossible for a caregiver whose attention is required without interruption. But if you understand how important those few minutes are toward keeping you in your sweet spot, you will prioritize finding a way.

Explain the significance of your need for this kind of intentional quit time to family and caregiving team members. As for help and creative ideas that will allow you to make it happen. Consider a cooperative exchange with someone who can trade responsible times with you so that each of you has opportunity to re-fuel your soul. Let me give you an example from my house. My husband will wrestle with our daughter for a few minutes or snuggle with her on the couch watching a movie so that I can take a break. Then he will do his workout while I give her a shower.

It can be difficult, at times, for deep thinking people to be at peace with themselves, others and even God. You may have high expectations, particularly of yourself. And you may see things clearly in ways that don’t always line up with how others see them. It may help you to meditate periodically on Psalm 51.

To live in your strengths, you will need to learn to make healthy attitude and behavior adjustments by the power of the Holy Spirit.

To stay in your sweet spot, you will also need to learn to deal constructively with anger. Yelling, screaming, hollering, throwing objects, hitting, being passive-aggressive and burying or denying your anger are all destructive responses.

You may find that one of your strengths is that you have the ability to analyze your way through anger. Once you recognize and admit your feelings, you’re able to think through the situation and come to a decision about how you are going to choose to move forward in a positive way. Be on guard, however. The longer you think about the situation, the more vulnerable you may be to becoming depressed, or growing even angrier. Be careful about isolating yourself when you’re angry. Reaching out to a close trusted friend for prayer and processing can help you avoid a negative spiral.

Friend, give yourself and others the right to be imperfect. Forgive yourself and others for mistakes. And talk through your disappointments with God in prayer. Forgiving doesn’t mean you have to move on like nothing ever happened. But it does mean choosing not to harbor negative feelings. Forgiveness and healing often involve a process of choosing, again and again, to forgive until the negative feelings are genuinely resolved.

TAP YOUR CAREGIVING STRENGTHS BY REMEMBERING, OFTEN, THE FAITHFUL WAYS OF GOD

If you tend to think deeply

  • Seek a role on the caregiving team where your keen observation and analytical skills are needed
  • Work toward an adequate balance of work, exercise, diet and relaxation
  • Learn to keep your mind more present in the activities and relationships of the moment (less on past and future)
  • Express appreciation to others frequently and specifically
  • Resist analysis and criticism that can feel discouraging to others
  • Release others and yourself from unreasonable expectations
  • Allow flexibility to work at your own pace whenever possible
  • Learn to slow down, letting your moods and thinking patterns rest with Jesus

Here are some tips if you are someone who tends to be pragmatic and well-reasoned in your thinking

  • Serve your family and caregiving team by contributing to conversations that involve decision-making and strategy planning (e.g., education/vocation transitions, guardianship roles, long term care)
  • Optimize your role as mediator and consensus builder in team discussions
  • Recognize that your passions for “the cause” may become a source of pride or inflexibility
  • Respect the rights, feelings, thoughts and plans of others
  • Help give voice to the value of varied perspectives
  • Learn to rely on Jesus to guide your own values, reasoning and humility

The Bible offers an abundance of help and encouragement for thoughtful people:

Philippians 4:8
Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise.

Galatians 5:16
So I say, let the Holy Spirit guide your lives. Then you won’t be doing what your sinful nature craves.

Psalm 94:19
When doubts filled my mind, your comfort gave me renewed hope and cheer.

Proverbs 14:10
Each heart knows its own bitterness, and no one else can fully share its joy.

1 Corinthians 13:12
Now we see things imperfectly, like puzzling reflections in a mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely.

1 Thessalonians 5:16
Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.

2 Corinthians 10:3-5
We are human, but we don’t wage war as humans do. We use God’s mighty weapons, not worldly weapons, to knock down the strongholds of human reasoning and to destroy false arguments. We destroy every proud obstacle that keeps people from knowing God. We capture their rebellious thoughts and teach them to obey Christ.

Proverbs 3:6
Seek his will in all you do, and he will show you which path to take.

Lord Jesus, take my mind to a quiet and content place with you. Make a way for me to have a daily routine that includes quiet time to let you fill my mind with truth and encouragement. When my thoughts are racing and my passions are strong, remind me of Your faithfulness. I am tremendously capable of the assignments you give me, only because your Holy Spirit fills me with power and wisdom. Yet I am easily discouraged and often stubborn. Show me how to live. Show me how to serve my family well. Teach me to have reasonable expectations of myself and others. My hope is best placed in You alone. Amen

Feel free to share the “Tap Your Caregiving Strengths” graphics in this article on your social media to encourage others. You can follow the entire “sweet spots” series here.

Tell us in the comments what helps you and your caring family!


Lisa Jamieson

Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Together, the Jamiesons founded Walk Right In Ministries in 2008, a non-profit organization building faith and community with special needs families. Lisa is the primary contributor on the www.WalkRightIn.org blog sharing practical and spiritual encouragement for parents and other family members caring for children with health and developmental challenges. She also serves on the Key Ministry writing team where she contributes monthly articles for special needs parents and church leaders. Her personal blog www.lisajamieson.org also provides encouragement for people who find themselves in challenging places.


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Tap Your Caregiver Strengths

I am a full-time caregiving mom for an adult daughter with severe-profound developmental disabilities and complex health issues. Family caregivers like me understand that self-care can feel daunting, even impossible much of the time. A nap is rare for most. A pedicure, while offering a sweet pampering pick-me-up, doesn’t have far-reaching impact.

I get up every day with more than an aching back and sore forearms. I start each day like every other parent caring for a loved one who has disabilities or mental health concerns. Those caring for an aging parent our spouse understand too. We all have desperate needs to keep up our energy, feel competent, provide safe and efficient care, remain loving and compassionate, fight fears, feel a sense of control over our circumstances, get satisfying socialization, balance attention to each loved one in our lives, do adequate self-care and generally stay encouraged.

Caregivers don’t need to live at the end of their rope! There is a way to stay energized and effective.

REFUEL

Caregivers must explore with great intention how we get energized right down to our soul. Many popular self-care tips are little more than “Band-Aids” with relatively short-term effect on a person’s capacity to serve sacrificially, let alone for the long haul. Caregivers with sustained, long-term energy pay attention to nourishing themselves in body, mind and spirit. Psalm 139 is a wonderful reminder that each of us is complex and unique, beautifully woven by the hand and heart of Almighty God. Christian temperament therapy has been one of the most valuable and transformative tools God has used to help my own family understand and appreciate God’s imprint on us. Caregivers can learn to fuel their souls in very personal, targeted and efficient ways. The process of fueling up helps us optimize our strengths, recognize areas of weakness and vulnerability, identify ways to cooperate with others and ultimately lean into the power of Jesus.

REASSESS

Caregivers are spurred on by having a vision. Do you have a sense of why God has called you to such a situation? God’s Word is rich with truth about His sovereign goodness in disability and reasons for asking us to take care of each other. We benefit from understanding our role on a team that includes God and others. We also need a well-fitting “yoke” and we need to wear it right alongside our Supreme Apprentice — Jesus. A prayerful look at Matthew 11:28-29 gives clues about how to walk in our strengths as caregivers:

Am I really carrying the “burdens” that are meant for me?

Am I carrying these responsibilities in the way that God means for me to carry them?

REPENT

Sin creates a sense of burden and fatigue. No caregiver needs any extra weight! I love the promise of Acts 3:19-20 that offers me a refreshing when I repent of my sin. Every caregiver has his/her own habits and hang-ups that hinder our connection with God and the fruitful potential of our life. I’ll be the first to admit that my caregiver stress can make me vulnerable to sinning. I am not my best self when I don’t pay attention to fueling my soul in godly ways. Psalm 139:23-24 reminds me to take an honest assessment of myself. Second Corinthians 12:9 reassures me that God’s strength is perfect, enough for me and fully accessible to me.

REORIENT

A strong and fruitful caregiver organizes time and priorities around God’s values, their own sweet spots (gifts, talents, experience and temperament strengths) and God’s calling (His unique design and purpose for each of us). Verses like Exodus 14:14, John 15, Acts 17:25 and 1 Corinthians 6:19-20 assure us that God wants to take care of caregivers. We must keep circling our wagons (or wheelchairs, walkers and adapted bikes) around Jesus Christ.

Learning to find our strengths as caregivers is a process. Learning to stay in a sustained groove of energy, effectiveness and sense of purpose is a life-long commitment. We are works-in-progress, after all. The opportunity in that process is to develop a precious intimacy with God and others. God is patient with us and delights in the adventure of our “growing up” with Him. We need to have compassion and patience with ourselves. We must also develop compassion and patience with others around us who are trying to learn their own sweet spots on the team.

Here are some ways to tap your strengths if you are someone who gets energy from doing tasks and thinking about ways to be efficient…

Check out several other practical tips for caregivers who want to optimize their role and stay energized on the caregiving team. (Click the download button below.) Use this downloadable file as a springboard for discussion with your family about how to keep each other energized and satisfied.

One of my conference presentations on this subject is also available to watch on YouTube here.

If you are a strained caregiver, let me assure you that there is hope. There are opportunities and great purposes in what you do. You will be imperfect but God redeems sins and weakness while empowering us with His Holy Spirit. He is able to create much out of nothing. He will remain trustworthy in our atypical lives even when we are doubting. Your mustard seed of faith is enough for Him. God wants you to experience peace — body, mind and spirit — and He will meet you with power right now and forever.

Psalm 73:25-26
Whom have I in heaven but you?
I desire you more than anything on earth.
My health may fail, and my spirit may grow weak,
but God remains the strength of my heart;
He is mine forever.


Walk Right In Ministries can help you or someone you care about to tap their caregiving potential.

  • Read the multi-part series on Tips for Caregivers by searching “sweet spots” on this blog.
  • Learn about God’s imprint on you, your needs and your purpose with a temperament therapist who is certified through the National Christian Counselors Association (NCCA) or the Sarasota Academy of Christian Counseling (SACC). WRIM’s own Lisa Jamieson is certified with SACC and a licensed pastoral counsellor.
  • Work with a licensed pastoral counselor to help your family understand areas of unique strength, weakness and vulnerability. We can help you identify causes of things like anxiety, anger, exhaustion, depression, fear and resentment through scripture, prayer and tools that help explain God’s unique role and purpose for you.
  • Get involved in our peer support group for family caregivers.
  • Explore practical strategies (e.g., ways to build your “tribe” of support, growing as God’s disciple). Reach out for WRIM’s caregiver consulting services.

Write us at info@walkrightin.org or fill out our online Interest Form.


LISA JAMIESON is a special needs family advocate and co-founder of Walk Right In Ministries where she serves as a caregiver coach and pastoral counsellor. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Lisa’s books and Bible studies include Finding Glory in the Thorns and the picture book Jesus, Let’s Talk.

Resource Corner: An Insightful Surprise and Two Delights for Kids

Claire Krantz is back this month to share a new Resource Corner. She’s offering reviews, ideas and recommendations about books, music and movies of interest to special needs families. Claire recently pulled some books from Walk Right In Ministries’ Lending Library and found some surprises for herself and the Church as well as a couple of favorites for kids.

Follow @readingwithcb on Instagram.

Mental Health and the Church

As I’ve been reflecting on this book and thumbing through the borrowed pages, I am struck by the enormous dream Dr. Grcevich invites us to envision with him. In being trained in general and child psychiatry, Dr. Grcevich stands in the gap for the families he treats as well as the church he serves.

I thought the medical jargon and statistics would be too much for me but they complemented each other nicely and seemed much less intimidating since they were spread throughout each chapter. While sharing but not focusing on those things, Dr. Grcevich shows his heart and longing for what the Kingdom could look like on this side of Heaven.

Mental Health and the Church is a book to learn more about serving a community on both the large scale of the church but also a small scale in our homes as well. There were many things I could share with you but with the fear of becoming too long winded, I will leave you with this striking quote:

“Who might Jesus bring to faith if the people in your church resolve to work together to remove whatever obstacles are getting in the way for many of your friends and neighbors who need to experience Jesus?”

Dr. Stephen Grcevich, Mental Health and the Church

God’s Very Good Idea

Lisa recently bought this book for Carly at an Usborne Books online party and shared it with me. We were both intrigued and expectant by the premise — that all people are created by God with celebrated purpose. We assumed the story would represent people of different kinds and colors and hoped it would also represent people with special needs.

I just say, this book is so sweet! Trillia J. Newbell essentially shares the gospel through colorful and representative artwork. God’s Very Good Idea always comes true when He creates his children. Each and every one with purpose, on purpose.

My one thought upon finishing it was that I wish there was as much inclusive language as there was illustration. It would be easy enough though, while you’re reading with a child, to add your own narrative about more people God wants in His family. Adding specific diagnosis or characteristics would be a fun way to engage young and young at heart people.

The Jesus Storybook Bible

I’ll be the first to say that I tend to complicate the gospel but each and every story in this book is condensed and still has the depth and clarity of my own NIV bible. One of my favorite things that makes this bible different is that Jesus is the center and ending every time. Sally Lloyd-Jones has written The Jesus Storybook Bible to be simple.

Occasionally the pages are oriented from left to right but other require you to flip the book sideways. Small differences like that have kept me engaged and it is so fun to flip through. I sometimes get lost in the history and sheer length of the Old Testament but circling the story back around to God and the Rescue Plan makes things less daunting and much easier to understand.

Referencing this special book has been helpful to me when it’s my turn to share the Club Talk (devotions) as a leader with Young Life Capernaum. No matter what actual or developmental age a person may be, this Bible helps us all see Jesus’ presence throughout history, from the very beginning to the end of time.

Image of the Jesus Storybook Bible

Claire Krantz is a blogger, reader, hiker, camper, game-player, puzzle nut, music fan and general lover-of-people. She speaks in exclamations points — which is her friends’ way of saying she exudes cheer, encouragement, hope and fun. She grew up and lives in the Midwest where she is personally and professionally dedicated to living among friends of all abilities and celebrating God’s unique and purposeful design of every person. 

Follow more of Claire’s reading adventures on Instagram @readingwithcb.