When I was 7 years old, I was diagnosed with Ectodermal Dysplasia. I vividly remember driving to the University of Texas Health Science Center with my mother and father. I remember them telling my parents the diagnosis and prognosis. The tears rolled down my mother’s cheeks. I was terrified of the new unknown. I was told I had only developed 3 permanent teeth. Period. I began learning to follow my heavenly Father without knowing what the future would hold.
I’ll be honest, this part of my story is hard to tell. There are things about it that are extremely painful. But I want to share it because I see God’s ”palace training” in my life.
The phrase “palace training,” evokes ideas of unfamiliar practices and experiences we are not privy to. Only the elite living in the palace are trained to reflect the honor and respect of their king or queen.
Moses is an example of someone God put into palace training. God had a plan for his people. But to accomplish this, He needed someone with specific training. Moses’ mother placed him in a basket at the river where Pharaoh’s daughter bathed. She trusted that Moses would be part of a greater plan God would bring into motion.
Moses was a Hebrew, being raised in a palace. He was being taught the rules and persuasions of a king who would, one day, free God’s people. God was providing palace training for the man He would use to bring about the Exodus — the leading of His Chosen people to freedom and promise.
Navigating childhood and teenage years with a noticeable disability was difficult. I was accepted into a study program at the National Institutes of Health in Bethesda Maryland. I spent most of my high school years enduring surgeries and procedures so I could have teeth. During the spring of my junior year in high school, I underwent the final surgery. It was excruciating. During my convalescence, I was homeschooled for three months.
Finally, the time came to place my prosthetic teeth. I looked in the mirror and began to cry. My gratitude was overwhelming. The healing was long and painful. As my body healed physically, God was working on a calling in my heart. I had no idea what would come, or where I would serve, but emphatically acknowledged His voice.
I met my husband, Chris, in my junior year of high school. It was just months before my implant surgery. I was still wearing dentures. One night, he picked me up for dinner and a movie.
While we were eating, I realized he had a strange look on his face.
I asked him, “What is wrong?”
He replied,”Uhh….your tooth is gone.’ My front tooth had broken off of my denture and I hadn’t noticed.
I was mortified!
Later on, my husband told me he fell even more in love with me at that very moment. God had sent me a man that loved all of me —because of Whom I loved.
When God takes us through palace training, the outcome is always meant to foster wisdom and courage. You see, God knew Chris and I would, one day, have two children with special needs.
God knew our children would endure countless surgeries, procedures and hospitalizations. God had prepared me, through palace training, to empathize and love these children with a honed personal experience.
It is true. I have wrestled mightily with God over the why of my special needs kids. Ultimately, I accepted the peace God brings in trusting Him even when.
Sometimes God sends a lion into our lives. Rest assured, that if he sends a lion, you will be equipped with the training to fight.
In March 2016, I wrote the poem, The Lion Awaits. It is a testimony to God’s faithfulness in my life. The lions have come. But my Father has taught me well. He has trained me with strength for today and bright hope for tomorrow.
THE LION AWAITS
The soul rejoices, day and night, to the peaceful presence of His strength and might. We hear his voice in the soft still night. “I have blessings untold,” the Messiah invites. The heart beats out, ”the joy of the Lord is My Strength!”
An unknown test is silently delivered swiftly with one blow.
A soul screams, “Why? Have you forsaken me?” The Father says, “I love you child. I let the lion come.” The soul wails, “I will be destroyed!” The Master soothes, “It is for your good.” The soul fights and curses the lion. Emmanuel says, “Stand up and face the lion, for I am with you!” The soul whimpers,” Why, my Lord do you stand far off?” The Creator says, ”Stand firm that I may glory in the power of your endurance.” “I am slain,” wept the soul!
The Redeemer said, “You must endure unbelievable pain to join me someday.” The soul reverently surrenders, and tells the Healer, “When I despaired even of life, a whisper was heard.“
“You will have trouble, but I have overcome the world.”
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 two 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.
It was a quiet morning at the oceanfront hotel where we were staying at Virginia Beach. The breeze off of the Atlantic Ocean gently combed the beach grass. Families of birds chased the retreating waves, their footprints too light to make any impression in the sand. I walked alongside the beach, taking in the overcast grey sky blending into the waves. The beach approached a peninsula, promising a view that would surely not disappoint.
As the beach rounded the corner, another expanse of beach came into view with the same grey watercolor. I kept on walking. The horizon continued to taunt me as I walked closer to the end of this beach segment, followed by another bay of sand to trudge through. I kept my eye on the next corner. But each corner rounded to a similar scene. It seemed to be never-ending. It was beautiful, but it was also the same view no matter the number of steps I took.
This walk felt like my life — a “Groundhog Day” of caring for my disabled daughter. There are beautiful moments. But most days are focused on each step without seeing the view. We are dealing with many of the same issues that we have dealt with for a long time. Only now, we are older. And my daughter is now bigger. It is becoming more physically challenging to keep up. Our patience has grown greater. Our wisdom has grown deeper. But our fatigue has grown more real as well.
On my walk, I was looking for the beauty around the corner. I wanted the AHA! moment that would allow every grain of sand in my shoe to be worth the gritty journey. But each turn of the corner proved to be more of the same.
Chronic suffering is being trapped in a never-ending cycle of the same. We all have a painful thorn in our side that does not let up — an unanswered prayer, a salt-wound relationship that never heals, a broken heart that cannot ever be whole, a dream we must mourn. The reality is this broken world is marred by loss.
I want to thrive in loss. Just survival is not enough for me.
I want a thri-vival.
So how do we answer the deep aching feeling that there must be more?
For the Christian, there is more.
The only way to understand the intersection of a suffering mankind and a good God is to interpret this life through the lens of eternity.
The only way to find purpose in our suffering is to know that our lives exist for more than this world. The more we accept decay — and, for that matter, learn to embrace it — the more we become thrivers rather than just survivors.
Decay is everywhere.
When I was walking this beach with the repetitive view, I finally looked down. Shells, seaweed, and abandoned nettings were peppered amongst the sand. All were carcasses of life that once was. The beach is a battlefield littered with the remains of an ocean ambushing its prey. What is one’s child’s playground is the cemetery of mollusks. What is one woman’s treasured pearl is the oyster’s expulsion of waste. What is one family’s treasured keepsake of vacation, is the skeleton of a conch.
Decay co-exists with beauty.
In fact, decay is required. For the beauty that emerges from decay is richer, more fruitful, and lasts forever. Like the compost that enriches the growth of a garden, decay, disability, and death are the fertilizers of a richer beauty to come. Yet decay occurs at the same time that flowers bloom. Beauty and pain can be enwrapped in the same moment.
There is no better example of this paradox of beauty and pain than the cross. The cross is the intersection of many contrasts — injustice and justice, death and life, hatred and love, grief and celebration. When Jesus died on the cross, He did more than punch a ticket to heaven. Purposeful suffering was exemplified.
Still, living the joy of the cross on a daily basis is not easy. Especially in the mundane everyday struggles of motherhood or caring for the disabled, suffering can feel purposeless and never-ending. We can be deceived into hopelessness if we allow emotions to overshadow truth. The energy needed for everyday surviving makes thriving seem impossible. When the days of survival mode stretch into weeks, months, and years, we must learn how to thrive in the pit. So how do we seek thri-vival?
To thrive means that we change our expectations about decay. Our decay is not unique to our generation and decay will continue until this world belongs to Jesus again. We can certainly point out the decay of others, but we are often unaware of our own decay. We expect progression, not regression. And yet our society, many of our relationships, and our own bodies are fighting the natural decay that comes from the fall of man. We would like to believe that we are always getting better, but in reality, we ourselves are not immune to entropy. As our bodies and minds age, our ability to process our worlds is also dampened. But one day, this decay, too, will lead to eternal beauty. And decay will not exist in heavenly realms.
To thrive means we recognize our need for rescue. Grace covers our sin, for our salvation. But sanctification requires us to embrace pit-dwelling. He gives our feet a place to stand between each rung on the daily climb. This state of dependence is uncomfortable and yet necessary for our trust in God’s goodness to grow. The Gospel is lived daily in our lives when we are in a state of dependence. For our need for a Savior is often when we are at the end of ourselves.
To thrive means we learn to abide in Jesus daily. We rely on His mercies to be new every morning and enough for today’s trials. We humble ourselves to be a servant rather than the source. Abiding in Jesus is trusting Him to fill in the cracks daily. Abiding involves constant connection with our Source of strength. We are emptied continuously so that He can fill us continuously. And we must ask for help. Ask for His wisdom. Ask for eyes to see His care for us. Ask for a heart of praise. And these one-second prayers build our relationship with Jesus and help us see the treasures in each exhausting step. We must sit under the Bible as a servant and not stand over the Bible as a critic. As we learn of God’s plan for the decay of this world, our souls are comforted and reassured that He has an ultimate plan for redemption.
That is thri-vival — where pain and beauty co-exist. It is possible to be a thriver and not only a survivor. To thrive is to abide with Jesus. Because when we look only at ourselves and our circumstances, the decay is discouraging. But when we look at the cross, decay is defeated. It is in the daily struggle of chronic Christian suffering that we learn to abide. We learn to trust in the One who carries us from birth to death to eternal life. God alone sustains us.
Our walk on the beach becomes about Him, not about us nor the view that we think we deserve.
The walk to heaven is more pleasant when we let go of the “should be” and “should not be.” We will stop walking for the purpose of the view. We will walk because we are called to walk. And then we will start to see the treasures in every step. We will expect decay in this world rather than be disappointed by it. And one day, at the vantage point of heaven, we will look down at all of the faded footprints in the sand and we will understand why. The deepest sinking sand will be the sweetest places we thrived as we learned to abide in Christ.
This is the hope of the Christian in chronic suffering: There is more. And for today, He is enough.
Rachelle Keng is a physician practicing Obstetrics & Gynecology in Charlottesville, Virginia, where she lives with her husband Michael and their two daughters. She cares deeply for people and has a passion for writing about her reflections on life and faith. Rachelle’s oldest daughter has Angelman Syndrome. Her experiences as a special needs mom are often the inspiration for her writing.
Inspiration often comes from unexpected places. Sometimes it comes through friends, family or even strangers. Other times it comes straight from God Himself. That’s the lesson guest-blogger Maureen Pranghofer is sharing on our blog today.
Have you ever created something and then totally forgotten about it? Well, what causes that? It might be that someone destroyed the masterpiece you’ve just painted, written or baked. It might be that there was a pandemic which interrupted everything. And it might be that the thing you created wasn’t born out of your ideas but someone else’s.
That’s what happened to me about 7 years ago. My totally well-meaning step mom kept saying, “You should write a book.” She wouldn’t stop. For some reason she thought growing up legally blind and with a bone disease would make a good story.
Finally, I’d had enough. To get her off my back, I wrote an autobiography of my childhood called Driving in Squares. My step mom and dad made sure that the formatting looked okay, made a cover for it, and coil bound it. When I visited them in Tucson, we gave about 10 copies away to people they both knew.
I said when I got home. “That episode in my life story is done.”
Sometimes, though, when we think we’re done with something God has other ideas.
I recently asked my friend Elizabeth to come over and help clean off some shelves. We sorted through things and threw piles of junk away. She was picking up each book and CD and telling me what it was. As I responded to her descriptions, off each item went into the “keep” or “toss” bin.
“Driving in Squares” she said.
“What?” I asked. I didn’t remember ever buying a book called that. Then I remembered what it was and told Elizabeth I was surprised I had a copy of the book.
“Can I read it?” she asked. “Sure” I said.
When she brought it back six months later I held it and wondered if I should toss it. Then I set it down by my computer.
Six weeks later I got an email from my father who said, “Just to relax, I like reading your book. I’ve read it about four times. When are you going to write the next one?”
“The next one”, I thought. I haven’t ever done anything with this one!
My dad reminded me that at the end of the Driving in Squares book I’d said there would be a sequel.
And somehow, that’s how I’ve found myself in this New Year, consumed with thoughts about writing.
Isn’t it amazing how from just mundane chores like cleaning off a shelf you can find yourself with desires that are new and changed? My writing only because I was bothered by what I perceived as nagging by my stepmom is evolving into something beautiful. And God is the only One who can bring about those surprising events that turn us around to where we find ourselves moving forward.
In 2021, we can be picking up what we had once forgotten. It may take us to new and fresh places we never imagined!
If you’d like to read my little book Driving in Squares, email me at email@example.com. Let me know the name and address where you’d like it shipped. Also let me know if you’d like it in a hard copy or pdf file. Happy New Year!
Maureen was born legally blind and with a rare bone disease. Neither has ever slowed her down. She is a songwriter, author, speaker, music therapist and brailleist who also tests websites for accessibility. Since the mid 90’s, Maureen has run her own business called Braille It where she produces material in Braille for a variety of customers.
Maureen holds a Bachelor of Arts in Music Therapy and has worked as a therapist with terminally ill children, the elderly and those dealing with addiction. She has also done intake work at a rehabilitation center.
Psalm 16:11 You will show me the way of life, granting me the joy of your presence and the pleasures of living with you forever.
I have history with this verse.
My first recall of resonating with Psalm 16:11 goes back to 2009 when I was writing curriculum for a women’s conference where I was to speak four times throughout the weekend. The Lord used my circumstances at that time and my posture with Him during that season to ripen my heart to hear something deeply personal in the promise of Psalm 16:11. Then God grew fruit out of that for the benefit of about 130 other women as we explored the presence and voice of God for two days together. Ever since that time, there has been a spiritual “nostalgia” wrapped into that particular passage for me.
Several scriptures have developed relevance for me in specific seasons of relationships and circumstances throughout my life. For example, I wrote my first worship song around Hebrews 11:1 shortly after I made a personal decision to follow Jesus when I was 14 years old.
I know this is true for many of us. In the ministry work I do, I have had the privilege of hearing hundreds of stories from people around the world about how different scriptures have been personal and powerful for them. It’s common for people of faith to identify with certain verses at memorable moments for poignant reasons that only God could have stirred. After all, scripture is “alive and active” according to Hebrews 4:12.
God will never stop speaking to us through His Word.
John 1:1-5 1 In the beginning the Word already existed. The Word was with God, and the Word was God. 2 He existed in the beginning with God. 3 God created everything through him, and nothing was created except through him. 4 The Word gave life to everything that was created, and his life brought light to everyone. 5 The light shines in the darkness, and the darkness can never extinguish it.
Considering how much personal history can be packed in certain scriptures, that got me reflecting on this year. After all, 2020 was a remarkable year. And there are a handful of scriptures that stand out to me as having met me in remarkable ways this year. In some cases, God just kept threading themes into my conversations with others that would lead me back to related passages. In other times, God’s words came to me in big moments — moments packed with meaning, deep thoughts or large emotions. The intensity of 2020 and the nature of feeling sort of stalled out in time, tended to keep me circling my faith wagons around scriptural places of resonance, insight, comfort, anchoring truth and hope.
These verses reflect recurring landing points or pivotal moments in my life and faith during 2020:
1 Peter 5:9 Stand firm against him, and be strong in your faith. Remember that your family of believers all over the world is going through the same kind of suffering you are.
Psalm 139:23-24 Search me, O God, and know my heart; test me and know my anxious thoughts. Point out anything in me that offends you, and lead me along the path of everlasting life.
2 Cor 1:8-11 We think you ought to know, dear brothers and sisters, about the trouble we went through in the province of Asia. We were crushed and overwhelmed beyond our ability to endure, and we thought we would never live through it. In fact, we expected to die. But as a result, we stopped relying on ourselves and learned to rely only on God, who raises the dead. And he did rescue us from mortal danger, and he will rescue us again. We have placed our confidence in him, and he will continue to rescue us. And you are helping us by praying for us. Then many people will give thanks because God has graciously answered so many prayers for our safety.
Proverbs 14:10 Each heart knows its own bitterness, and no one else can fully share its joy.
2 Peter 3:9 The Lord isn’t really being slow about his promise, as some people think. No, he is being patient for your sake. He does not want anyone to be destroyed, but wants everyone to repent.
Joshua 5 & 6 (especially 5:15) The commander of the Lord’s army replied, “Take off your sandals, for the place where you are standing is holy.”
Note: I found a model in Joshua for an important reset in my life this year. If you’re interested, you can read that story here.
Luke 1:39-42 Mary hurried to the hill country of Judea, to the townwhere Zechariah lived. She entered the house and greeted Elizabeth.At the sound of Mary’s greeting, Elizabeth’s child leaped within her, and Elizabeth was filled with the Holy Spirit. Elizabeth gave a glad cry and exclaimed to Mary, “God has blessed you above all women, and your child is blessed.
I now have a “history” with these verses that I will carry with me for my lifetime. They reflect intimate lessons God has poured into me. They represent a sort of private dialogue I feel I’ve had with Him during 2020.
I love that about the scriptures! As in any relationship, there are moments shared in a conversation that stick out in our minds and stay treasured in our memories. I’m so grateful to have the kind of relationship with Jesus that produces these kinds of memories and keeps influencing me as a disciple of Christ throughout my life!
I have found it remarkably encouraging, inspiring and forward-pointing for me to reflect on these verses that have marked 2020 for me. The process itself was a powerful reassurance to me of God’s intimate presence, power and goodness in my life, particularly during some dark or complicated days.
I’m excited! I see a new and meaningful tradition starting here. I plan to spend some time every December from here on, asking God to show me those scriptures that defined, repositioned or grew my faith that year.
What scriptures are part of your faith history? What are some intimately memorable ways God has spoken into your life through His words this past year?
LISA JAMIESON is a special needs family advocate and co-founder of Walk Right In Ministries where she serves as a caregiver coach and licensed 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.
In the late spring of 2020 when it started becoming clear that Covid quarantining wasn’t going to end soon, I started realizing a lifestyle reset was in order. It took several months and an untimely accident to shake me to my core and get my soul powered up for the long winter at home parenting an adult child who doesn’t understand why her world has so dramatically changed.
You know how it is when you restart your computer. The process is designed to clear errors and bring the system to normal condition in a controlled manner. My phone reminds me on a weekly basis to restart all of my devices. I’m told that a reset puts less stress on the hardware than power cycling because the power isn’t removed. How interesting!
I would really like my life to be cleared of errors and to feel like it’s working in an orderly manner. And, as this computer metaphor suggests, I would benefit from staying connected to my Power Source in the midst of transitions.
Life sure does benefit from a ‘restart’ now and again. Many of us try to reset our priorities on New Year’s Eve. A new schoolyear and birthdays are seen like fresh starts for many. Spiritually speaking, repentance gives us a chance to begin anew too.
Acts 3:19-20 Now repent of your sins and turn to God, so that your sins may be wiped away. Then times of refreshment will come from the presence of the Lord, and he will again send you Jesus, your appointed Messiah.
2 Corinthians 5:17 Anyone who belongs to Christ has become a new person. The old life is gone; a new life has begun!
I’ve been desperate for refreshing lately while asking God to protect some old stuff I actually did NOT want gone!
My 22-year-old daughter Carly has Angelman Syndrome and lives at home. Her anxiety and difficult behaviors have ebbed and flowed through degrees of troublesome to exhausting throughout the pandemic. She’s confused. She’s lonely. She’s bored. She needs more physical touch — lots more. Like you and me, she’s sick of it all. But she doesn’t have effective coping skills or communication abilities to give voice to her many feelings and needs. She’s destroying clothing (chewing collars and sleeves, literally ripping pajamas off at night and risking damage to her teeth on zippers). She’s having trouble going to sleep at night and staying asleep throughout. She gets agitated during the day without our creatively offering as many choices as possible on laminated photo cards. I fear the poor girls feels like she has no control over her world anymore. Last week she bit me twice — hard. This from the girl who hasn’t bit me more than two or three times in her whole life until now.
In the midst of navigating Carly’s needs, the usual household chores and several pressing work deadlines, my husband and I sat down to finish recording a presentation we were doing for the Wonderfully Made Conference. We wrapped up just before lunch one day back in September and I decided to eat a sandwich on our deck while catching up on a few emails. After that I was going to record another of my personal presentations.
It was in that moment of sunshine when our already sideways world turned completely upside down.
I spilled a full glass of orange juice on my laptop. Let’s just say that the past four weeks since that day have been deeply disappointing, stretching and eye-opening. The irony of the situation was not lost on me. The conference presentation I was going to record after lunch that day was titled, “RESET: A Seasonal Necessity for Special Needs Families.”
My original inspiration for the subject was the pandemic. Now I was living a metaphor that had me squirming deeply. It took me to my knees day after day while we waited for the data recovery specialist to bring news that my badly damaged hard drive was restored. A couple of weeks went by and the conference organizers were graciously waiting on me. But their window of flexibility was quickly narrowing. Other concerns and timelines were looming too.
One morning, I had a caregiver staffed with Carly for the day so I could get back to regrouping and trying to record my presentation from memory — without my notes or PowerPoint slides. I was tempted to throw down breakfast and head straight into the battle before me. I longed to take a cup of tea and my Bible to our deck as the warm fall days will soon be past. But that felt indulgent on a day when opportunity to “take the hill” was in front of me and I had help with Carly for a limited time.
Reluctantly taking a lesson from myself and many past talks I’ve given to countless others, I leaned into Jesus’ prompting to carry His lighter burden and go to the deck anyway. Against all my task-oriented leanings and self-reliant ways, I tried to yield to that still small voice that wooed me, “be still, Lisa.” One of the original verses I had planned to reference in the RESET talk was ringing in my ears, “Come to me…find rest for your soul.” (Matthew 11:28-29)
I sat down wondering where to open my Bible but got distracted. My mind wandered to Joshua 3 and 4. Those are favorite passages that inspired the naming of Walk Right In Ministries back in 2008. And they continue to be reminder and inspiration to me about walking in faith, one step at a time, and trusting God to show each next step as I trust Him and obey Him.
For a moment I got curious. What, specifically, happened right after the Israelites crossed over the Jordan River to the Promised Land? I could specifically recall. I knew that their lives of slavery and then wandering in the desert were followed by a period of many victories in battles that seemed insurmountable. But I couldn’t remember whether the Bible gave any specifics about the transition period between marking the Gilgal spot with a pile of rocks and then heading into that first battle.
Immediately, I had a sense that there could be clues in Joshua 5 or a powerful example of a God-style, God-sized, power-packed reset. What I found there was, in fact, a gold mine. Within about 15 minutes time, I had a roadmap and encouragement to step back into my life with peace and a renewed sense of empowerment. My fear was gone and my frustration was released. The sense of pressure I felt to dig into my projects no longer had a grip on me or my blood pressure. I felt like the soldiers walking quietly and patiently around Jericho simply waiting for the final blast of the horn. I wondered what walls God was planning to throw down when I had the chance to shout praise for His perfect timing and process on the road to my Promised Land.
That was a holy moment in my life. Reading Joshua 5 and 6 with a deep personal need and new perspective was just what I needed. I was no longer stuck and my process for a course correction was clear.
As a bonus, I had a brand new (and much better) outline for my presentation. What would have taken me a couple of days to rebuild, had been reestablished with fresh perspective and new fire (passion) in just minutes. Once again, the Divine irony.
Here is the Joshua reset model God showed me.
REAFFIRM IDENTITY — Joshua 5:2-7
Remembering WHO and WHOSE they were was essential to claiming the promises and hope ahead. The only reason that circumcision mattered was because there was a promise on the other side.
We tend to let disability start to define us as individuals and a family. We can tend to give disability too much power over our grief, logistics, attitudes towards caregiving, etc.When one of our daughters once exclaimed in frustration many years ago, “We’re so high maintenance!” I knew we needed to review how we thought about disability in our family.
Romans 2:29 True circumcision is not merely obeying the letter of the law; rather, it is a change of heart produced by the Spirit.
REST — Joshua 5:8
Before heading straight into battle, the Israelites spent time recovering and regrouping from everything behind them.
Getting adequate self-care feels impossible for many caregivers. We need to have compassion for ourselves in weakness and trust God while we fight for refreshment in mind, body and spirit. I fight as hard for sleep, respite, vacations, staycations and deep connections with loved ones as I ever did for Carly’s IEPs, quality medical care, therapies and healing.
CELEBRATE — Joshua 5:9-10
God told them to roll away the shame of their slavery in Egypt. He knew that the Passover Feast (a celebration of God’s faithfulness) would restore their confidence in Him, boost their morale and bond them as an army of warriors for the battle ahead.
Our investment in celebrating birthdays, anniversaries, holidays and family reunions — despite how difficult that can be to make happen — is a way to cultivate appreciation and grace for each other while developing relational bonds. Those bonds will be valuable to us and our children’s future in ways we probably can’t fully understand now.
FUEL UP — Joshua 5:11-12
The Israelites stopped eating the manna of the past and starting nourishing on the crops of Canaan (the Promised Land).
Ecclesiastes 7:10 Don’t long for the “good old days,” for you don’t know whether they were any better than today.
We have to keep saturating our minds with God’s promises, our future hope. There is too much temptation to dwell on life’s ease before disability or fantasies about what the future would look like without it. Fueling up on gratitude and God’s promises helps me keep my goals and priorities in perspective. Effective soul care keeps me energized too. Our family has used Christian temperament therapy for almost 25 years to understand how God uniquely created each one of us. And that helps us learn to optimize our strengths, recognize our weaknesses and vulnerabilities, and teaches us how to tap our full potential by leaning into the power of the Holy Spirit within us.
WALK IN ATTENTIVENESS TO GOD — Joshua 5:13 to Joshua 6:21
The Israelites needed to pay attention to God every step of the way. As he walked toward his battlefield, Joshua asked God, “What do you want your servant to do? (Joshua 5:14-15) As God’s army of chosen people asked for His leadership, trusted His strategy, obeyed methodically and responded thoroughly, God made them strong.
Seeking God for guidance and help as a lifestyle impacts how we put supports in place and build teams (respite staff, volunteer helpers, medical providers, supports planners, church, IEPs, guardianship and wills, etc.). God is ready to help us handle crisis (illness/hospitalization, pandemic) and approach transitions (education, caregiving team, jobs) too.
Joshua and the Israelite army did not rush but walked methodically in faith and obedience (Joshua 6:3-5) trusting for the promise (Joshua 6:2). They had to be thorough in their obedient follow-through by destroying everything and not taking anything with them. All of the plunder was to be an offering to the Lord. (Joshua 6:17-21).
This day and this situation is not just about WHAT and WHOSE battles we fight but HOW we fight them.
Matthew 11:28-29Then Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you…and you will find rest for your souls.
I’m still unpacking the full meaning of Joshua’s reset model for my own march toward the promises of God. And I’m excited. I’m no longer stuck in regrets about the past or lamenting what is lacking yet today. I’ve captured the vision of my Israelite ancestors and I’m walking in freedom, anticipating the surprises of God’s love.
What can this look like for YOU? What are your next steps toward the promises God has for you and your family? What is on the other side of COVID, our marriage storm or disability? What is on the other side of anything that is disabling you or your family?
Like Joshua, let’s stop right now and pray, “What do you want me to do?” and then worship God. Joshua worshipped by taking off his sandals and recognizing the holiness of that moment on the edge of promise (Joshua 5:15).
Recognize YOUR Holy Moment! Walk closely with your God and let Him pave your way to His love.
LISA JAMIESON is a special needs family advocate and co-founder of Walk Right In Ministries where she serves as a caregiver coach and licensed 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.
I’m not a trail mix fan. Never have been. I still only tolerate raisins and just started showing enthusiasm for dried fruit a couple of years ago. I prefer my snacks separated into their own bowls. But the last 22 years are a trail mix of emotions and memories for me. And for all the ways and times my mind, body and spirit have been thrown into chaos since Carly was born on this day in 1998, I’m profoundly grateful for the rich texture and depth of flavor she brings to our collective lives.
Carly is a woman who will test the limits of your wits and then move in to give the most generous and satisfying hug you’ve ever received. Her smile lights up a room. Her grin assures you there is much on her mind. Her laughter is infectious. Her high-decibel scream warrants ear protection. When she’s hurting, she’s a puzzle to help. When she’s aggravated, she’s strong as a horse. When she has energy to burn, she’ll use every inch of her small frame to knock you down and wrestle on the rug. When there’s food around, her arms seem many and long. Forever curious, even nosey at times, she’s been affectionately called a “seizer of opportunity!” She’s a sneaky rascal and fiercely stubborn. That curiosity and energy serve her well. A dance party with Carly finishes out any day perfectly. She pours music and praise from her soul. I have huge respect for her perseverance. She’s exploded my own faith and expectations on a number of occasions. For all the times we have to ask her to “just wait” while using a full body block to keep her from tearing into something or knocking something down, I don’t know anyone who would be so patient as she is.
We’re celebrating Carly’s 22nd birthday today. Larry and I were married at 22 so this number throws another few layers of nostalgia and emotion to all the feels. We had an epic dance party that night. We’re going to have another one tonight with all three of our incredible daughters and a bunch of other loved ones. They will join us virtually on something called Zoom. Yes, it’s an epic year, isn’t it?
When I shake the bowl of my feelings today, the ones that quickly rise to the surface are pride, gratitude, hope and joy.
Happy birthday, Carly! We’ll try to give you gifts you love. But, truly, YOU ARE THE GIFT.
1 Thessalonians 3:9 How we thank God for you! Because of you we have great joy as we enter God’s presence.
NOTE: Carly’s oldest sister is the one helping Carly make trail mix in the featured photo. Rest assured, that is a sweet moment I was happy to watch them have together. But I had no interest at all in eating the snack with them. Even without the raisins, I’m not interested, thanks. 🙂
You can watch Lisa’s Real Talk livestream above. The article below highlights the spirit of her message on caring for each other by remembering well.
National leaders have been talking a lot about caring for each other these days.We’ve talked about things we can do to help protect each other during the coronavirus pandemic:
Wash hands Cover your mouth Keep physical distance Stay home
Today I was listening to the news and hearing compassionate guidance for families grieving the death of loved ones during this time exceptional time of loss. My own aunt passed away last weekend. My heart aches for her siblings (including my dad), my uncle and cousins who couldn’t be present with each other through her last weeks and hours. Nor can they say remember her within the fellowship of loving community the way people typically grieve (at least for now). My cousin’s wife is a funeral director. Like so many working in funeral homes, she is wrestling to help families when there are so many new protocols and limitations on our rituals.
It got me thinking about what we’ll remember most about this pandemic thing.
I hope we remember this season in ways that are honorable.
honorable to people who lived through it or died during it
helpful to those who come after it
and pleasing to the God who walked through far worse for us.
How do we do this? How do we honor those who are lost or the ones who are sacrificing so much in during this time?
I think we might best honor this season by how we remember it. And how we remember this time starts with what we do with it now.
What kind of memories are we creating during this shelter-in-place experience? I’ve been thinking about this. I’ve been praying that God would show me how to be attentive to Him in how I spend this opportunity. Yes, something is getting spent here in this surreal way of living. I’m not trying to lay a guilt trip. I’m hoping to cast a vision. Because I’ve caught a vision. I believe God starting planting it in Larry and me years before this isolation season was thrust on the rest of the world. Because, you see, special needs families like ours already know some things about the shelter-in-place lifestyle that the rest of the world is just starting to learn.
We raised our family trying to be intentional about creating good memories. Disability was so consuming of our life. And the risk was great that Carly’s needs would flavor our life in such a significant way. Larry and I didn’t want our challenges with Carly to be what our other children remembered most about growing up a Jamieson. We understood that the challenges would bring them some helpful lessons and memories too. We just didn’t want those challenges to have inappropriate or disproportional weight or influence. So, now and then we tried to dream up some remarkable things that would stand out in their memories alongside the blessings and challenges of being a special needs family. For example, our vacations opportunities were rare and challenging but we did what we could to make some happen. Sometimes that even meant planning an epic staycation. But we also tried to make special things out of everday stuff. The phrase “power fold” is packed with nostalgic meaning for our family. That story is for another day.
In a similar way, I think we have a need and opportunity to be intentional about creating memories of this time too. I’m been thinking: how can we honor and care for each other beyond the handwashing and social distancing — especially to honor those who will live on and those who gave everything for us?
We can work with great intention NOW to make sure that the lasting message of this season — the legacy of this time — is a helpful one. We can do this for the sake of those who gave so much, for the sake of our children and for the sake of future generations. We can work with intention to care well for each other — not just in protecting each other’s physical bodies from harm of the virus but also by caring for each other’s souls (our minds and spirits). We can remember God. We can share hope. We can lead in faith. As special needs parents, we can feed our own souls and find others who will lead us well so that we can, in turn, lead our families well.
God has been telling us to “remember well” since the earliest days of mankind. He showed us how to throw feasts and gave specific instructions about what to celebrate at those feasts. God knows our need to focus our minds rightly. The Old Testament feasts helped our ancestors do that. Practicing things like communion and Christian holiday worship services help us remember and enjoy God’s presence and power among us. When people looked back on their memories with a focus on regret or longing for the former times, God warned them. He said there was a better way.
God knows our need to focus our minds rightly.
At Walk Right In Ministries, one of our favorite examples of God showing his people how to remember well happened at the Jordan River at the brink of the Promised Land. The story is told in Joshua, chapters 3 and 4. That experience inspired the name of this ministry. You can read about it here.
Now, because it is Good Friday, I got thinking about Jesus’ sacrifice and how we remember that. Do you see the “rabbit trail” I’m on here?
What does it look like for me to remember and honor Jesus’ sacrifice well?
Today especially, I want to acknowledge my depravity and self-centeredness
I’m trying to express deeper and more frequent gratitude for what He gave up for me
I want to own my faith story and live it well so that others will see that God is faithful
1 Peter 3:15 Instead, you must worship Christ as Lord of your life. And if someone asks about your hope as a believer, always be ready to explain it.
So what do you think the legacy of this pandemic will be? There are a lot of people speculating about that.
Today, I want to suggest that we NOT PASSIVELY WONDER.
I want to suggest that we start today BEING INTENTIONAL about creating memories.
This doesn’t need to be a big or complicated master plan. I think the power lies in a combination of two things:
Being attentive to God’s prompting in simple moments during the day or week.
Thinking creatively about a few grand gestures.
Some of my most treasured simple moments so far have been learning how to sign the message of “Happy Easter” with Carly, baking cookies six times more often than usual, playing Family Farkle on Zoom with extended family, sharing goofy Marco Polo chats with our daughter across the country and having daily conversations with my husband about our fears, frustrations or hopes. When it comes to the grander gestures that will likely flavor the way we remember this time, a couple of things that come to my mind are two birthdays we celebrated during the pandemic, the tremendous sacrifice Carly’s caregivers made to help us through (and that are allowing me to share with you like this right now) and a special Easter egg hunt we created for a couple of neighbor kids.
What I want to help others remember most about this pandemic experience is three things:
This was a time when we learned to enjoy each other much more meaningfully.
This was a time when we learned to experience God more intimately.
This was a time when we learned to share God’s love with others in ways that were both profoundly satisfying for their souls and highly honoring to God.
Joshua 4:21-22, 24 Then Joshua said to the Israelites, “in the future, your children will ask, “What do these stones mean?” Then you can tell them…”He did this so that all the nations of the earth might know the power of the Lord, and that you might fear the Lord your God forever.”
Psalm 27:13-14 Yet I am confident that I will see the Lord’s goodness while I am here in the land of the living. Wait patiently for the Lord. Be brave and courageous. Yes, wait patiently for the Lord.
John 14: 12 “I (Jesus) tell you the truth, anyone who believes in me will do the same works I have done, and even greater works, because I am going to be with the Father.”
Would you like to connect in a private small group setting to dig deeper into God’s word and grow with others who are caring for a loved one with disabilities?
I’m so excited to invite you to join me and other special needs family members for a new weekly Zoom video conference called Real Talk Multiply! We love shared stories at Walk Right In Ministries — especially when they bring encouragement and/or Christ-pointing insight within community.
Real Talk Multiply also offers a private Facebook group for ongoing discussion outside of the video conference gatherings. We simply ask that you keep those conversations confidential, respectful and spam free.
The Real Talk Multiply community begins April 14th, 2020 and will continue every Tuesdayfrom 2:00 pmuntil 3:00 pm (Central). Holiday and vacation exceptions will be announced in the private “Real Talk Multiply” Facebook group.
Join us whenever you can!
Lisa Jamieson is an international speaker, author, caregiver advocate and licensed pastoral counsellor. Her passion is spurring special needs families toward growing intimacy with Jesus and thriving relationships with each other. She is co-founder and executive director of Walk Right In Ministries and leads the Minnesota Disability Ministry Connection. Lisa is a member of the Sarasota Academy of Christian Counseling certified in Christian temperament therapy. Her books and Bible studies include Jesus, Let’s Talk which was inspired by her daughter, Carly, who has Angelman Syndrome. Lisa and her husband, Larry, have been married for 31 years and have three grown daughters.
Life challenges can take many forms — disability, chronic illness, caregiving for an aging parent or special needs child, strained or broken relationships, divorce, addiction, depression, unemployment, the loss of a loved one, and financial struggles. Issues can be complex and the journey may be long. Many experience confusion, anger, doubt, fear, or loneliness. Meanwhile, our society compels us to “muscle” through challenges but often leaves us feeling generally alone or overwhelmed.
Despite life’s painful seasons you can discover an adventure, right in the midst of adversity.
Thriving in challenges is possible with Christ-centered community and one-to-one friendships as well as personal study of the Bible and prayer. And while a strong and tenacious support system is critical, a personal relationship with Jesus Christ is essential. READ MORE about this essential foundation.
Walk Right In Ministries considers it one of life’s blessed privileges to come alongside struggling people who are wanting to grow and thrive on their journeys toward solutions, strength, contentment and joy. We want to help you identify resources and build connection strategies that fit your personal circumstances and unique temperament needs.
CONNECT THROUGH COMMUNITY
Walk Right In Ministries helps people find and bepart of fruitfully supportive communities. There are supportive communities for virtually any type of life challenge. Links to some wonderful opportunities are included throughout this article.
It is important to remain active in a Bible-believing church where you can be regularly involved with others who will “rejoice with you when you rejoice and mourn with you when you mourn” (see Romans 12:15). However, we understand that the Church does not always know how to effectively support families experiencing disability and other kinds of crisis. We are thankful for a growing number of organizations making it a priority to learn about how to help in this important and complex area of ministry.
We hope you are already experiencing fruitful and grace-filled connection in a church home. Unfortunately, many churches are still learning how to help families with special needs experience belonging. If this is the case for you or your family, we want to encourage you to be patiently persistent in helping educate your church about including people with diverse backgrounds and various abilities.
If, however, you are struggling in this area, and feel it may be time to look for a new church home, please pray and reach out for help. Our friends at Joni & Friends as well as Key Ministry are working hard and fruitfully to help people in situations like yours to find supportive churches. Walk Right In Ministries is ready to pray with you and do what we can to help you initiate a search process. We want to encourage you in developing a more effective spiritual community.
Support Groups are another way to get connected and grow. Biblically-based support group resources are available with a variety of themes so you can find one that fits your own particular need. If you are experiencing any of these concerns, consider some resources we can recommend:
Finding Glory Groups are a valued resource for those needing a guide to follow for their support group. Whether you know a church small group, book club or group of special needs moms, dads, couples, or siblings who want to explore life challenges together, utilizing the Finding Glory Group Discussion Guide is a bible-based curriculum that is flexible for these kinds of gatherings. The six-session format is easily self led and offers a variety of discussion questions so that groups can reconvene and repeat a cycle of sessions after the first round, if they desire to do so. If you are someone who wants to understand God’s answers to tough questions, know you have value in the Divine Plan, be encouraged on your journey and grow with others along the way, then a Finding Glory Group is for you! Learn more about Finding Glory Groups HERE.
CONNECT IN ONE-TO-ONE DISCIPLESHIP
Be encouraged to develop friendships where you can share joys and struggles safely, be inspired and challenged, and experience the power of prayer.
WALKING PARTNERS— We encourage you to cultivate one or two close relationships where Christ is central to your conversation. Walk shoulder-to-shoulder with one another listening, encouraging, exhorting and empowering. (If you are married, please be cautioned to develop only same-sex Walking Partner relationships.)
TEMPERAMENT COUNSELING— We encourage individuals and couples who are facing life-altering circumstances to find a professional Christian counselor who is certified in Temperament Counseling through the Sarasota Academy of Christian Counseling(SACC). Prayerful use of the temperament tool in the counseling process can help you get to the heart of your needs quickly so you make efficient and effective progress towards healing, encouragement, hope, personal growth, and answers.
FINANCIAL COACHING— If debt or financial challenges are part of your situation, please explore the resources at Crown Financial Ministries.
Particularly if you are facing a crisis situation or are feeling very alone, we encourage you to ask your pastor or a church leader for guidance in finding a support group, professional counselor or crisis help.
CONNECT THROUGH PERSONAL STUDY
At Walk Right In Ministries we believe that prayerful reading of the Bible is our best source of interaction with God — our supreme and final authority on faith and life. There is true hope within the pages of the Bible. We want you to be encouraged in daily reading and study of the Bible recognizing the opportunity that it is to grow in your personal relationship with God, develop God’s perspective of suffering and discover peace that surpasses understanding.
There are many organizations who are making it their mission to help connect and engage people with God’s Word. Here are just a few nationally-recognized options we value highly for study and online daily devotions:
At Walk Right In Ministries, we passionately believe in the power of prayer. Everything we do at Walk Right In Ministries is covered by and trusted to prayer. We offer prayer workshops and take prayer requests from around the world.
Confess your sins to each other and pray for each other so that you may be healed. The earnest prayer of a righteous person has great power and produces wonderful results. JAMES 5:16
Be assured that God hears you and delights in connecting with you in a deeply personal way. The Psalms are a ready example and source of inspiration when we don’t know what to say to God. (If you need help getting started, read Psalm 6, Psalm 42, and Psalm 73 for some wonderful prayers!) God understands our aching, longing and groaning, even when we don’t know what to pray.
And the Holy Spirit helps us in our weakness. For example, we don’t know what God wants us to pray for. But the Holy Spirit prays for us with groanings that cannot be expressed in words. ROMANS 8:26
We are very excited about one of our newest resources on prayer, a children’s book called Jesus, Let’s Talk that released in 2018! It offers a delightfully visual exploration of basic prayers to help children, early readers, and people with developmental differences enjoy the sweet basics of conversation with Jesus. The book also highlights key prayer words using American Sign Language. At Walk Right In Minisitries, we champion faith in Jesus that is initiated and fostered within the family.
We want you to feel assured that you, too, are covered in prayer. Let our Prayer Team come alongside you to pray for courage, hope and victory! Contact us at firstname.lastname@example.org.
Another prayer resource we like to recommend is the Autism Strategic Prayer Network (designed with autism in mind but very broadly applicable to other diagnoses). Explore Children of Destiny for more information.
[…] RELATED: Tips for Caregivers: Feeling Valued and Competent […]
[…] RELATED: Tips for the Caregiver Who Is Very Independent […]
[…] Logical persuasion and positive reinforcement can be very motivating for you. So it can be helpful to you and…
The encouragement and resonance is mutually appreciated!
This article is rich with truth and encouragement itself. I find myself re-reading sometimes just\ to share in the commonality…
Carly Jamieson took her first steps when she was 3 1/2 years old. That came after years of stress and tears because her sensory issues were so severe that she couldn’t even tolerate being held in her parent’s arms for feedings until she was 9 months old.
At 2 1/2 years old, Carly started having seizures and was diagnosed with Angelman Syndrome, a rare genetic disorder involving a deleted portion of her 15th maternal chromosome. Despite the fact that Carly faced a grim prognosis and had been experiencing significant developmental delays, a sleep disorder, feeding problems, and seizures, a miracle story of community and a child’s potential was unfolding.
For over three years, sixty volunteers surrounded Carly’s family with help and prayer. That support set a foundation for amazing progress that continues bearing fruit in many ways yet today.
The heartwarming story of God’s love through that community during those early years of Carly’s life is told in the book Finding Glory in the Thorns.
Click HERE to find the complete Finding Glory collection of books at Amazon.
Today, Carly’s tolerance for touching things shows itself in the contagious affection, frequent hugs and exuberant smiles that are much more typical of someone withBut Angelman Syndrome. She’s a little “rascal” with a great sense of humor. She loves music, dance parties, sitting beside her sisters at the piano, jumping, swimming, and helper her caregivers make pumpkin waffles. The quality of her gait is remarkable considering her prognosis and she sporadically uses a small handful of word approximations. She has twice walked over a mile in the Angelman Syndrome Foundation annual fundraiser walk with her mom, dad, two sisters, and many friends.
That baby who would not be held now snuggles with precious bear hugs and even sometimes says, “I love you.”
Angelman Syndrome (AS) is the result of an abnormality of the 15th maternal chromosome. Individuals with AS have global developmental delay and cognitive disabilities. They rarely develop any speech but everyone benefits from learning to listen in new ways to what they have to say.
People with Angelman Syndrome usually have unique behaviors and generally happy personalities. Most individuals with AS will experience seizures. Many also experience sleep and feeding challenges. The majority learn to walk but usually have balance and movement disorders. A normal lifespan can be expected.
Angelman Syndrome is very frequently mis-diagnosed as autism or cerebral palsy.
With strong supports, people with AS can thrive surrounded by friends and loved ones engaging in meaningful activities and sharing their unique perspectives.
ln a medical breakthrough, Dr. Edwin Weeber cured Angelman Syndrome in a laboratory mouse. Because AS affects one single gene it is much easier to understand than other neurological disorders like autism and Alzheimers’ disease. Funding for research has more potential than ever as researchers grow closer to making a treatment available for humans.
The inspiration for the name Walk Right In Ministries comes from the Bible and the experience of the Israelites crossing the Jordan River to the Promised Land.
Now the Jordan is at flood stage all during harvest. Yet as soon as the priests who carried the ark reached the Jordan and their feet touched the water’s edge, the water from upstream stopped flowing. It piled up in a heap a great distance away…all Israel passed by until the whole nation had completed the crossing on dry ground.
In the Bible, as remains true today, God always reveals His power or presence when people responded in faith toward Him.
We are, perhaps, most familiar with Jesus’ miracles. Sometimes Jesus simply spoke a word of blessing and multiplied fish and bread. Other times his miracles came after someone expressed their faith such as reaching out to touch his garment or crashing through a roof to be near him.
God moved miraculously in Old Testament times as well. One of the Israelites’ many remarkable experiences of God’s powerful work on their behalf occurred at the shores of the Jordan River. Forty years of wandering in the desert were about to end. The Promised Land was in sight but the harvest-season waters of the Jordan were at flood stage and as many as three million people needed to cross.
God spoke to their leader, Joshua, and commanded that he have the priests carry the Ark of the Covenant and step into river. God’s promise was “since you have never traveled this way before, they will guide you.
Forty years prior to the Jordan River crossing, God had parted the Red Sea for them. Did they question whether God would do it again? Might the priests carrying that heavy ark have had any concern about their safety as they stepped into the unstable, murky water? We can’t know for certain what the Israelites were thinking that day on the brink of reacing their Promised Land once and for all. But we can be inspired by their obedience and trust.
The founders of Walk Right In Ministries— Larry & Lisa Jamieson — have learned time and again that when God says, “Go!” He is always faithful to their going. The first time they heard about this experience of the Israelites, it prompted them to take steps toward asking for help with their disabled daughter, Carly. They hoped that special therapies and support from their community would unlock unexpected developmental progress for her. It did so much more.
God used that step of faith to do immeasurably more than anyone asked or imagined and now countless lives are being changed for eternity.
Yes, Carly made unexpected progress but it turned out to be about much more than one child’s development. God knows our steps of faith are aboutso much morethan what we think they are about!
God is often mysterious in His ways. He doesn’t often reveal what is coming next or tell us the end of the story. He just shows us single steps to take along the road of life. He prompts us to begin moving in a certain direction and then waits for us to respond in faith. When we do, He reveals something about Himself to us and often that involves showing us the next step to take…and then the next.
We walk through this winding, bumpy life one step at a time. And sometimes those faith-steps require walking right into a raging river of circumstances. No matter how extraordinary our circumstances are, God wants us to embrace the adventure right from this middle of His promises!
What step of faith is God asking you to take today?
Won’t you comewalk right into lifewith us? After all, an entire nation crossed over to the Promised Land on dry ground!