When Lions Come, We Can Rely on Palace Training

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.

Yet, God has NOT given us a spirit of fear but of power, love, and sound mind.

1 Timothy 1:7

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.

“The Lord who rescued me from the claws of the lion and the bear will rescue me from this Philistine!”

1 Samuel 17:37

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.

The Secret to Thriving, Not Surviving

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.

A vertebra "shell" found on Virginia Hampton Beach
A vertebra “shell” found on Virginia Hampton Beach

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?

  1. 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.

“Listen to me, house of Jacob, all the remnant of the house of Israel, who have been sustained from the womb, carried along since birth. I will be the same until your old age, and I will bear you up when you turn gray. I have made you, and I will carry you. I will bear and rescue you.”

Isaiah 46:3-4

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.

When God Calls Us Back To Something Forgotten

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.

Paul, Maureen and Walter Pranghofer celebrating Christmas 2020 in their home.

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 maureensmusic@comcast.net. 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.

Pranghofer’s children’s book, Ally’s Busy Day: The Story of a Service Dog, is available on Amazon along with her music which includes numerous recordings. You’ll find her blogs The Walter Report and Maureen’s Musings at Maureen’s Facebook page.

Maureen lives with her husband Paul and service dog Walter in Golden Valley MN.

BOOSTING FAMILY MORALE SERIES (Part 3): Seven Ways to Energize & Refresh Your Special Needs Family

This is the final installment in a three-part BOOSTING FAMILY MORALE SERIES for special needs families. I hope you’ll have a chance to go back and readPart 1 and Part 2.

I also discussed this subject of Managing Morale in special needs families during a 60-minute interview with Stephen “Doc” Hunsley MD, founder of SOAR Special Needs. You can watch that episode of “Talk with Doc” here.

You can read all kinds of books and blog articles about boosting morale. You could invest a lot of time in trial-and-error mode, testing ideas but feeling a mounting pressure or disappointment when some things don’t work as well as you hoped.

I want to help you skip past as much of that exertion and discouragement as possible. As I’ve said several times in this series, responding to the real root of what is undermining morale will give your family the most positive traction much more quickly and effectively.

So, as you prayerfully ponder these seven ways to energize and refresh your special needs family, I want to ask you to keep the unique and individualized needs of your family at the front of your mind. Home in on an area below that most closely addresses the roots of anxiety or discouragement. Here are some examples:

If someone is struggling with all the things out of their control, it should help to review the scriptures and tips under “Anchor Your Worth and Competence in Christ.”

If someone is struggling mentally, their mood is quite likely to begin shifting when they “Saturate Your Mind with Truth.”

If someone is feeling isolation fatigue, they will benefit from a strategic look at “Connect in Community.”

For those who tend to be more emotionally oriented, look closely at “Change Your Scenery.”

If things just don’t feel fair, read the noted scriptures carefully under “Remember that God is Just.”

If you’re feeling stuck or trapped, there is potential for great refreshment within the whole family when you “Take a Step of Faith” together!

If you’re simply exhausted, you’ll find a creative and collaborative effort to “Rest” pays off generously.

Now let’s really dig in to where the rubber hits the road!

Saturate Your Mind with Truth

PROVERBS 23:7 | 2 CORINTHIANS 10:5 | PHILLIPIANS 4:8

This is critical area of opportunity for people who spend a lot of time thinking or who tend to be deep thinkers. Renewing your mind with truth is a powerful mood shifter when you are vulnerable to things like fear, doubt, confusion, shame, guilt, discouragement and burnout. The scriptures (especially those listed above) will help keep your mind focused on God’s Kingdom meaning and purpose in things like suffering and waiting. When thoughts are spiraling, God’s Word is a calming anchor.

Connect in Community

HEBREWS 10:25 | 2 CORINTHIANS 1:3-5 | ROMANS 3:10,23 | JAMES 5:16

This one is BIG! No matter who we are, we all need relationships. But we don’t all need them to the same degree. Be careful about lumping people into categories like “introverts” and “extroverts.” Those labels can mislead. It is usually more helpful to think specifically about the kinds of connections different people need. Do you enjoy casual connections, want mostly deeper relationships — or both? (I’ll elaborate on these below.) It’s also important to factor in what is needed compared to what is actually expressed. For example, some people actually have a great need for relationships but don’t really show it. They may rarely initiate connections. And since they don’t express their need, people get confused or pull away.

There are very generally two kinds of connections and we don’t all need both.

  • Casual Connections — If someone in your household is missing being out and about during quarantine or needs to feel connected in the broader community, they could be the best person to do the grocery shopping. Encourage them to turn on LIVE radio and TV shows. Invite them to sit with a group around a socially distanced bonfire or play virtual games. It has helped our daughter Carly to be part of Zoom dance parties. And she’s been learning to throw dice while playing Zoom Farkle with her friend and cousins.
  • Deep Relationships — Some people need relationships where they can connect on a more intimate or emotional level. These are the kinds of relationships where there is an exchange of love, affection and appreciation. Whether it involves several or just a few people, these are the people in your household who look to close friends, family members, their church fellowship and a counsellor for a warm sense of belonging. When something like caregiving or the quarantine limits these deeper connections, it’s absolutely essential to find ways of adapting and accommodating the need. People with higher needs in this area may find it helpful to snuggle with a pet, cuddle with loved one, get creative about how to have a date, go for a walk holding hands with your partner, watch shows about relationships or read character-driven stories. They will want to play the kinds of games that rely on conversation. It should not be surprising that this person will run from a game of Chess but (all irony intended) thoroughly enjoy the game Pandemic! This type of person may even enjoy hanging out with a friend on Zoom while they both do a puzzle or craft and sip a cold beverage. You may want to give these family members permission to sit out on the driveway for social distancing conversations or spend more time on the phone.  

Change Your Scenery

HEBREWS 11:8 | ACTS 22:7 | PSALM 40:2

This is a helpful tip for shifting anyone’s mood but especially people who tend to be more creative or connected to their emotions. Those who “feel everything” or who feel things more intensely will benefit greatly from moving their body or moving the furniture! Back in April, we rearranged our family room and we love it. A couple weeks later, we we changed around our deck furniture and added new plants. All of that was so simple and has been like a breath of fresh air that keeps paying daily dividends.

When you need to boost mom’s morale, let her go take a shower. Some dads love and teenagers love to mow the lawn to get some alone time or listen to their music. It could be the change of atmosphere that is lifting their spirits. Try using paper plates, eating outside or sitting at a different table. You can invite your most creative child to build a fancy table setting. The point is to switch up the routine. Light a candle, read a different kind of book (choose a different genre), change your clothes, cut your hair, buy new sheets for your bed or bring some flowers in from outside.

Anchor Your Worth & Competence In Christ

ISAIAH 54:10 | PHILLIPIANS 4:13 | 2 CORINTHIANS 3:5

It is not at all unusual for caregivers and parents to struggle with feeling like they are doing enough for their loved one with special needs. They lament not having bandwidth to balance the needs of multiple children. Children perceive pressure to measure up too. We’re all tempted to measure our own worth in this world by what we contribute or some privately created standard of “quality.” Ultimately, our confidence can only grow from having our identity firmly rooted in Christ not in what role we play in our family, church, workplace or community. Our value to God isn’t based in our efforts. We’re saved by our faith alone. If you struggle with feeling like you don’t measure up or worry about what others think of you, remember that perceptions can be far from reality.

Remember God is Just

ACTS 17:31 | 1 JOHN 1:9 | PSALM 58:10-11

God’s word speaks loudly about His promise of justice. Ask God to reassure you by showing you meaning and purpose in your challenges as well as your future hope. If someone is really struggling in this area, a good devotional on biblical justice or the sovereignty of God is likely to be very encouraging.

Take A Step in Faith

PROVERBS 3:5-6 | 1 CORINTHIANS 2:5 | 2 CORINTHIANS 5:7 | EPHESIANS 2:10

Do you want to see your encouragement to grow, enthusiasm about life to be restored in your family or faith to blossom in someone you love? Start with one simple response to a sense of godly prompting.

Pray together asking God to show you one way He wants you to take action, then walk it out as a family. Few things create as much excitement as seeing God reveal his presence, power and goodness in response to our faith and obedience. Our circumstances are complicated and when we look too far ahead, we get overwhelmed.

Our special needs families will find encouragement in taking one step at a time while holding plans loosely and anticipating the surprises of God’s love.

Rest

EXODUS 14:14 | EPHESIANS 3:20-21

Oh, how often morale in our family wanes because we are plain bone tired and simply don’t listen to our body. I think special needs families can run on fumes so often they start to forget how exhausted they are. Overwhelm starts to feel normal.

We underestimate the transformative effects of a power nap or a shower. Or we resist resting because we’re afraid that once we stop, we’ll never be able to go again. We see complex needs and circumstances in front of us and assume full responsibility for fixing problems, finding cures, optimizing developmental potential and finding comfort for pain while also doing all the same things the neighbors do like maintaining the house and cars.

May I suggest, quit trying harder and just draw nearer to God. Give yourself a “time out” with Jesus. It sounds simplistic and super spiritual. But what if God really does love your family even more than you do? What if he really is sovereign and trustworthy? What if “taking a Sabbath rest” was really an option? Maybe it won’t be a whole day or look like the kind of rest your neighbor gets, but your family needs to cooperate with each other to get some breaks.

Take some deep breaths. It could literally help to go blow bubbles with the kids. Assign some things to a routine (e.g., Taco Tuesday, Friday Pizza night, Saturday take-out). Set a schedule so rest can be anticipated. Burdens are eased by knowing when a break is coming, even if it’s a short one or a couple of weeks away. Collaborate about decisions as much as possible.

You’ll probably have to ask for help more often. Open up your “closed system.” It is quite possible that step of faith God is whispering to you is, “ask for help, My child.” You don’t need to feel guilty about teaching siblings ways of helping either. Teamwork is not just about disability but about being part of a family. Don’t abuse anyone but learn to cooperate and complement each other. Don’t rob God of opportunity to create blessing through your community.

Do you hear in all of this an invitation to experience freedom?
I sure hope so!

The process of learning about each other and how to love each other better is the grand adventure of life, after all. Be patient with yourselves and enjoy the freedom you have to make new discoveries. No one needs to make comparisons or shame themselves for not being “that parent” who does all the fanciest, funnest things either. When it comes to building morale, a little goes a long way — and it goes a long way fast — when we hit the root needs in a targeted way.

These are powerful tools you can give your children, friends. As parents cooperate in marriage and learn to lead their dynamic family in ways that celebrate individuality, they model healthy and godly relationships. This is the essence of self-care that simultaneously complements how we care for others. Our children will thrive in future life and relationships when they learn this kind of self-care and servant-hearted relationship with others.


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

BOOSTING FAMILY MORALE SERIES (Part 2): Developing A Complementary System

In Part 1 of this series, we looked at five ways to “keep the Light on” in special needs families. We explored things that drain energy and tend to trigger discouragement or conflict in a special needs household. In that article, we looked at spiritual fundamentals for a robust and positive family system. I hope you’ll have a chance to go back and read BOOSTING FAMILY MORALE (Part 1 of 2): Five Ways to Keep the Light On for background that leads into this second part in the series.

I also discussed this subject of Managing Morale in special needs families during a 60-minute interview with Stephen “Doc” Hunsley MD, founder of SOAR Special Needs. You can watch that episode of “Talk with Doc” here.

Now let’s dig in to Part 2 of the series.


Do you know how incredibly unique and valuable you are? God’s imprint on each of us is vastly different. And you are quite a masterpiece, according to your Creator! Here’s how David tells it:

Psalm 139:16-18
You made the delicate, inner parts of my body and knit me together in my mother’s womb.
Thank you for making me so wonderfully complex!
Your workmanship is marvelous — how well I know it.
You watched me as I was being formed in utter seclusion, as I was woven together in the dark of the womb.

We are not just delicately woven in our physical body. We are also complex in mind and spirit. The COVID-19 quarantine has made many of us more aware of needs like these:

  • Longing for connection with other people
  • Craving time alone to recharge
  • Missing a fuller schedule
  • Wishing we could sleep more or read another book
  • Thinking deeply and spending a lot of time doing it
  • Feeling deeply (but not always expressing it well)
  • Dissatisfied until we get stuff checked off our to-do list
  • Wanting to give or receive expressions of affection, attention, appreciation, affirmation

In fact, I’ve been embarrassed and ashamed by how needy and self-centered I am at times, especially during this COVID season! In some ways though, this quarantine-induced understanding and awareness could prove very helpful. It reveals areas where we tend to be vulnerable. It can give us clues about what we need to do in order to stay healthy and satisfied. For example, isolation intensifies anxiety for someone who needs a lot of connection with people. If that person stays attentive to their need for certain kinds of connection and finds healthy, satisfying ways to do it, they will stay energized and maintain a more positive outlook.

Darkening moods and interpersonal conflict are typically a response to inadequately met needs. Whatever your unique needs and degrees of expressing them are, that is where you’ll find powerful clues about what keeps your batteries charged or what will re-energize you and build positive momentum within your mind, body and spirit. The same is true for each person in your home — uniquely so.

We all have strengths, weaknesses and vulnerabilities to sin. Each of us is a work in progress. We are not perfect humans but we hope to be generally be headed in the direction of personal growth. Thanks be to God, there is no condemnation for those who belong to Jesus. But there certainly is opportunity and responsibility to grow as a disciple and representative of the Kingdom. Learning how to be attentive to our needs and other’s (by staying in tune with the Holy Spirit) and asking God to help us complement each other’s uniqueness (with a servant’s heart) makes us more like Jesus. It also builds morale in our homes.

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.

There are seven areas of opportunity to boost energy levels, encouragement and refreshment in your special needs family.

I’ll be writing in more detail about each of these areas in Part 3 of this series.

In the meantime, it’s important to know that you’ll get the most efficient and powerful morale boost by focusing your attention in one of these areas for each person. Pray about which area is most likely to address the true root need they have. For example, if you’ve noticed that your husband’s spirits have become low, consider what his root need may be then explore ways to cooperate with each other to meet mutual needs in a balanced way. Sometimes that means sacrificially taking turns. Ideally, this is a very cooperative process.

The other day at my house, we encountered an opportunity just like this. There was growing friction between me and my husband, Larry. The tension was getting expressed by one of us (who I won’t implicate here) as impatience and a critical tone. The other (who I won’t throw under the bus) was retreating from communication and resisting expressions of affection.

We could argue all day long about who started it and who was “right.” But the truth is, each of us had some core needs that weren’t getting adequately met. The quarantine was wreaking havoc that week. We were in a valley needing the ebb to meet the flow in a more positive way. By re-examining the list below, we recognized an opportunity to collaborate that would re-energize and encourage both of us. Larry watched a TV show with Carly that didn’t interest me while I gave myself a pedicure. Ninety minutes later, the momentum had already begun to shift to a more positive tone. In this case, he sacrificed more because he was on duty with Carly and had faced a couple of interruptions. But later that night, I gave him a neck and shoulder massage.

Balance. Compromise. Cooperation. Teamwork.

Morale is highest when we are a complementary system!


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

BOOSTING FAMILY MORALE SERIES (Part 1): Five Ways to Keep the Light On

Families affected by special needs are well acquainted with the ebb and flow of discouragement, conflict and fatigue. Quarantine and current events are adding further stress to our family dynamics, including mental and emotional health. Just like our immune systems needs a boost of vitamin C when illness threatens, we need both proactive and responsive help for threats to our family’s morale.

In this series, we’re exploring targeted ways to bring a speedy delivery of fun, energy and hope to your doorstep! Our hope is to show the way to experience an extra strength, extended-release dose of spiritual and practical encouragement.

First off, I just want to acknowledge that families impacted by disability and other special needs can find life intense and rather complicated. Thankfully, there is a richness to life and relationships that comes through the way God has uniquely woven us into our families as well. Still, we encounter many days and situations that feel very heavy. We never know when a crisis may arise and plans are regularly thwarted. Each person in the family has times when their mood darkens. And when they do, one person’s mood can ripple through the entire household.

What are the things that seem to trigger heaviness in your heart or home?

Perhaps you’ll relate to some of these examples:
The repetitive and tedious nature of daily cares (e.g., bowel regimen, housekeeping issues created by disability such as laundry)
Seeing our child self harm
Medical crisis
Comparison to others
Feelings of isolation or being invisible
Reminders of lost dreams
Battles for a better IEP or other rights (e.g., health insurance)
Seeing areas where our child is falling behind
Feeling inadequate as a caregiver or parent
Feeling trapped, stuck or hopeless
Disappointment from a sibling who can’t play or demands attention
Resentment of a spouse who gets to go to work and escape
Guilt within a spouse who needs to work and isn’t able to help more at home
Disconnection from spouse, community or others
Pressure to make decisions
Grieving (a diagnosis or lack of diagnosis)

People use various words to describe the dark moods or conflict that creep in on the heels of such triggers.

anger, hurt feelings, defensiveness or hyper-sensitivity, discouragement/hopelessness, anxiety, grief, depression, exhaustion, lack of motivation, loneliness

Families who tend to be resilient within the ups and downs of the household atmosphere are those who are proactive in caring for each other and also responsive to clues that stress is mounting. They learn to be attentive to each other, communicate often and recognize areas of vulnerability to shifting moods. They make an effort to understand each other’s most typical triggers and cooperate with each other in making sure root needs get met — before the valley of the shadow looms large.

It’s a process and no family is going to handle the ebbs and flows perfectly. But we can learn to find a balanced family system that softens the shadows and reduces their frequency.

Proverbs 27:12
A prudent person foresees danger and takes precautions.
The simpleton goes blindly on and suffers the consequences.

5 Ways to Keep the Light On

John 8:12
When Jesus spoke again to the people, he said, “I am the light of the world.
Whoever follows me will never walk in darkness, but will have the light of life.”

What can help keep the Light on within your special needs family?

  1. Pay Attention to Where Your Identity Rests
    If you are someone who loves and follows Jesus, you are a child of God (John 1:12-13). That is who you are first and that is where your identity is anchored. Disability doesn’t define you. The beginning and end of your calling and your empowerment comes from your Creator. You are part of a special needs family but that is secondary to being part of God’s family.

    Children who grow up with solid reassurance about where they stand in that broader spiritual family will have their most powerful tool for thriving through their teens and early adulthood. As each person matures, wrestles and lives through ages and seasons of self-discovery, there is delightful freedom in knowing that their core place of “home” rests safely with God. Within that anchoring identity, each person has God’s permission and encouragement to explore their roles, opportunities and contributions in the big wide world. Resist giving disability, complex medical needs or mental health difficulties all the power over the tone of the household or mindset of the family system. You are more — individually and together — than any diagnosis.
  2. Maintain Safe, Open & Positive Communication
    Make your home and family a safe space for ongoing and proactive conversations about what is creating dissatisfaction, restlessness or grief. Resist the spirit of criticism (1 Corinthians 13:1 and Philippians 4:8). Most special needs families also benefit by seeking counseling.

  3. Give & Receive Forgiveness
    Do some regular self-examination. Not a single one of us is perfect (Romans 3:10 & Romans 3:23). Confess weakness, repent of sins and become more aware of God’s unique imprint on your soul. God will help you see yourself realistically and as His masterpiece (Psalm 139:23-24) and he promises to bring a refreshing into your life when you humble yourself and repent (Acts 3:19-20, James 5:16).

  4. Appreciate that Each and Every Individual is God’s Work of Art
    God masterfully designed every person in your family with unique needs, ways of thinking, ways of feeling, ways of relating to others, passions, talents and spiritual gifts (Ephesians 2:10). Prayerfully study your family members to develop understanding, appreciation, compassion and respect for their precious value. Aim to identify ways you can live together that are complementary and show a balanced, servant-hearted regard for each person in the family.

  5. Rest On the One Constant in Your Chaos—God
    God’s character and promises never to change. He remainsthe same yesterday, today and forever (Hebrews 13:8). His nearness, faithfulness, sufficiency and perspective are completely dependable for us.

In Part 2 we’ll be exploring ways to cooperate with each other to meet mutual needs in a balanced and complementary way. We each have our own strengths, weaknesses and vulnerabilities. Learning how to be attentive to each person’s needs and honor each other’s uniqueness builds morale in our homes. Read BOOSTING FAMILY MORALE SERIES (Part 2): Developing a Complementary System.

Then in Part 3, we will look at seven practical and biblical ways to get energized and refreshed. Read BOOSTING FAMILY MORALE SERIES (Part 3): Seven Ways to Energize & Refresh Your Special Needs Family.

I discussed this subject of Managing Morale in special needs families during a 60-minute interview with Stephen “Doc” Hunsley MD, founder of SOAR Special Needs. You can watch that episode of “Talk with Doc” here.


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

Carly’s Thanksgiving Story

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.

That story was also the inspiration behind Christ-centered support groups that utilize the Finding Glory Group Discussion Guide.

BooksPromo2017

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.”

Carly is a gift!

We invite you to watch Carly’s Thanksgiving Story — an adventure tale that God is still unfolding.

What is Angelman Syndrome? 

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. 

Visit the Angelman Syndrome Foundation and the Foundation for Angelman Syndrome Therapeutics for more information. 

New Light of Excitement about Praying with Kids

How many delightfully different kids from around the world does it take to turn on a light of excitement about talking to God? Well, the author and photographer of the new book Jesus, Let’s Talk discovered that about 30 could do it beautifully! 
 Jesus, Let's Talk
Walk Right in Ministries is very excited to partner with the creative team of Lisa Jamieson (author) and Ann L. Hinrichs (photographer) in introducing the new children’s picture book about prayer called Jesus, Let’s Talk. It released on Amazon this Tuesday to raving reviews and plenty of smiles, especially from the young people who had the opportunity to model for the project.
One young man featured in the book opened his early-release copy recently and eagerly flipped through the pages. But he quickly overlooked any photo of himself because he was more excited about finding his friends pictured there. 

Jesus, Let’s Talk is helping children, early readers, and people with developmental differences enjoy the sweet basics of conversation with Jesus. There are many ways to worship and this natural approach to prayer inspires both the young and young at heart. 

Colorful photographs of children and young people celebrate that the fingerprints of God are on all people, all around the world. The book also highlights key prayer words using American Sign Language. Young ones who are not yet talking, those who experience hearing impairment, and others who simply want to explore the joy of communicating non-verbally will have fun learning new ways to express themselves.

Featured prayers include:
Thank you, God
I’m sorry, Jesus
Help me, Holy Spirit
I’m listening to you
I believe in you
I love you, Lord


We hope you’ll join us in sharing this wonderful new resource with others. Introduce a child to a personal relationship with their Creator, Savior and Friend, Jesus. Jesus, Let’s Talk makes a perfect gift for toddlers, early readers, and for young people with developmental-intellectual disabilities.

Also, would you please go to Amazon and write a review? Sharing your confidence and encouragement is invaluable in helping us get this book into more homes where families can experience the love of Jesus and grow in relationship with Him.

Write a Review
                                                             
Visit the Online Release Party
Lisa Jamieson (author) parents a grown daughter with special needs and is a national disability ministry leader who is also a speaker and author of Finding Glory in the Thorns and related Bible study materials. Jesus, Let’s Talk is her first children’s book. Connect with Lisa at lisajamieson.org .

Ann L. Hinrichs (photographer) serves missionaries worldwide while enjoying the arts as a musician, worship leader, voice teacher, and international photographer. Find out more at annhinrichsblog.com .


 

Miraculous Preservation

A common concern among caregivers, especially parents of children who have disabilities, is what will happen to our children if they outlive us. And as middle age comes, depending on the degree of toll in caregiving and other life circumstances, we caregivers tend to fear that our bodies may wear our long before we actually die. What then?

And so we pray a lot. As we’re able, we do some planning. Having an estate plan in place offers some peace of mind as does doing lots of documentation for those who will be inheriting the caregiving responsibilities. Our family has had many conversations about this and those are always very reassuring as well. But at the day’s end, when my body is aching and I’m weary to the bone (as they say), I’m left with taking it all to the Lord in prayer and begging him to preserve and protect my husband and I for as long has He possibly will!

Today I was reading the accounts of a missionary who travelled a ship between England and China in the 1930s. The ship’s route took them through the Red Sea with full views of the desert places where the Exodus occurred. Audrey Johnson’s pondering jumped off the page at me with reassurance that God’s capacity to preserve and protect His children is not limited by our physical bodies and minds.  

Audrey wrote:

Probably no one who reads Exodus can fully enter into that miracle of absolute dependence upon our faithful God who revealed Himself so clearly that throughout Israelite history and Psalms this miraculous preservation and protection was never forgotten. Think for instance of Deuteronomy 29:5 (which says): 

“For forty years God has led you through the wilderness, yet your clothes haven’t become old, and your shoes haven’t worn out” (TLB).

Audrey Wetherell Johnson

I want to remember this verse and the underlying promise it carries for our family too. Nothing has changed about God, His promises or His abilities. Jesus Christ is the same yesterday as He is today and forever. His character, power, goodness and accessibility remains as certain for me as it was for Moses. In fact, it’s even better because I (we) have access to God through the indwelling Holy Spirit!  

The very same God who so faithfully cared for the people of Israel makes the same kind of promise to me. His protection may look differently than I’m expecting but it remains dependable and will surprise me in the best of ways.

Whether you are a fellow sojourner down the caregiving road with me or someone who just needs reassurance, let us be confident of this — God is creatively preparing all kinds of “miraculous preservation” for us and for those we love.

Jeremiah 29:10-13
This is what the Lord says: “You will be in Babylon for seventy years. But then I will come and do for you all the good things I have promised, and I will bring you home again. For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope. In those days when you pray, I will listen. If you look for me wholeheartedly, you will find me. I will be found by you,” says the Lord.”


This post was inspired by the book Created for Commitment by A. Wetherell Johnson, founder of Bible Study Fellowship.

Selective Sharing

A few months ago, I posted this statement on Facebook:

“I don’t believe it can be overstated how stressful and wearying it is being the parent of someone with significant developmental and medical needs. There is also unspeakable joy. But make no mistake that this life is OFTEN more than overwhelming. I speak for my own family and many others when I ask you to pray hard and regularly for anyone you know living this life. We need your persevering friendship and sometimes help. We wish we didn’t need help, and very often we don’t even know what to ask for. But we can’t do this alone. Practical, emotional and spiritual encouragement is a gust of wind in our sails.”

Lisa Jamieson’s Facebook post | April 2017

This got a reaction.

Most people who responded were caregivers themselves. They resonated deeply with the sentiments I expressed. The rest of those who responded were encouraging friends whose comments usually indicated that they were praying for me.

I was grateful for the prayers but even more moved by the hunger among caregivers to feel noticed and heard. Since so many caregivers practically begged me to get this word about their (our) chronic stress out more broadly (on their behalf), I posted again the next day with a very personal and rather lengthy explanation about my own chronic stress and why I talk about it the way I do.  

I wasn’t expecting to post it, yet again, on my blog. But subsequent conversations suggest it deserves one more share. So here goes…

WHY DO I SHARE WHAT I SHARE?
AND WHEN I DON’T SHARE, WHY NOT?

There are a variety of reactions I encounter whenever I talk about how chronic stress is affecting my family and others in intense or complicated, often long-term circumstances. 

SHOCK
WORRY
APATHY
DEFENSIVENESS
RESONANCE/APPRECIATION

Obviously, not every reaction is helpful to a family like ours. But trust me, I understand most people are well-meaning and I’m very hesitant to criticize any reaction — I mostly appreciate ANY reaction (except apathy). Larry and I don’t expect perfection in understanding. But we do hope people at least care. And try. And we hope people won’t over-simplify what we are experiencing. That feels like invalidation of something that is very big and very real for us.

Some people want to better understand this so I’m going to try and explain more about it today and I’m going to be pretty transparent.

I know that I’ll be articulating perspectives that are not just my own because I’ve had emotional discussions with others about this very issue. One of those conversations was as recent as this morning when a friend called me from another state about the post I shared yesterday.

Yup. This hit some nerves.

When we don’t talk about our challenges very often, it is not uncommon for people to think that all is well. Some others who have some idea that life is always hard over here at the Jamiesons think we are just trying to keep a “stiff upper lip” or are wanting to be self-sufficient in our challenges. Some people believe we are trying to be “missional” in an effort to “look” put together with the power of God.

Seriously, we’re not trying to hide anything or even prove to anybody that “God’s got this.” 

Don’t get me wrong, I certainly hope my life points people to Jesus and shows that God is fully able, accessible and worthy to be praised. Because He most certainly is. I don’t know how anybody lives through a crisis like this without a relationship with Jesus Christ. But that’s not what underlies my philosophy (or for lack of better word, strategy) for deciding when and how to share the inner realities of my situation.

Of course we hope people will somehow see Jesus in us — whether through how He meets us in our challenges or for any other reason! Don’t we all want to see evidence that the living God is real? But the way I express my stress publically is way more selfish than that. Larry and I are, first and foremost, trying to live in a way that helps us thrive as individuals, a couple and a family. In the process. We just want to live within relationships that are REAL.

I gave up trying to tough things out a long time ago. I do just exactly what I have to do every day to survive and thrive. So, trying to look “good” or more “Christian” is far from the reality for me and Larry. We always want to be authentic with people and we highly value people who are willing to be real with us. In truth, there are a whole host of reasons why I talk about our specific challenges or overwhelm rather infrequently compared to how often we are actually struggling. For today, it’s important to me that you know WHY. God seems to have prompted me to just lay it out here for whoever cares.

“I don’t want to look normal for your benefit. I want it for me. So even though taking a shower, fixing my hair and putting on a cute, comfy outfit to go out in public takes the alignment of stars at my house and risks masking a reality about how much I need your prayers, help and friendship — I’m going to risk it.”

So, in no particular order, these are just a few of the reasons why I personally don’t talk often or widely about the specifics of my personal stress… 

  • I’m not always in touch with the reality of how extremely stressed out I am.
  • I function on autopilot a lot.
  • I don’t want people feeling sorry for me. 
  • I have all the same stresses everybody else does and would really like those to be recognized as part of who I am too.
  • A whole lot of people would rather just believe that “it’s all good” over here. 
  • Some people just want to cheer me up. 
  • Some people tell me, “you deserve to feel sorry for yourself.” This isn’t helpful for me. I appreciate the attempt at empathy but I don’t believe this is right thinking and it is rarely helpful for me to go to that place.
  • I spend a lot of my daily energy trying to pace my energies and emotions. That means I have to spend proportionately high amounts of time with Jesus and in prayer. Since my physical body is increasingly deteriorating due to Carly’s 24/7 cares, my age, long years without adequate sleep, etc., I have to give some priority to taking care of me as best I can (which is never really enough). I need more naps than the average person because I spend a lot of time awake at night. I need to serve others. It’s a great outlet for me — gives me a sense of purpose and keeps me from feeling consumed with my own challenges. Needless to say, all of that doesn’t leave a lot of time left over for complaining and explaining. 
  • Sometimes I’m just plain tired of explaining.
  • I don’t like people dismissing me as a “drama queen.”
  • I get tired of feeling like I have to be one of the world’s “teachers.” 
  • I weary of the disappointment of trying to build understanding and having my hopes and needs for resonance dashed when people don’t “get it.”
  • I don’t want to get my hopes up that someone will care (reach out) only to be disappointed.
  • When my situation is most overwhelming, I feel unable to explain my situation or emotions. My mind and heart feel too complicated to explain. So, if I feel able say anything at all, I just try to articulate even one thing I know people can pray about or help with. But that can give the impression that just one thing is weighing on me. (Yet, rest assured, whatever I am saying out loud is probably just the tip of the iceberg with lots more behind it.)
  • It helps keep me out of depression and those woe-is-me places if I focus on what is going well and what I’m grateful for.
  • Focusing on Carly’s strengths gives her the best shot of reaching her potential. 
  • Focusing on Carly’s strengths (instead of why she’s making things hard for me) feels more respectful to her.
  • Any time I talk about how hard it is caring for Carly, I risk undermining our ability to ever find or hire respite helpers (because people think they won’t be able to handle it).
  • I don’t want to worry my family.
  • I don’t want people to quit sharing their own concerns with me because they feel badly that their own issues may seem insignificant next to mine.
  • I often feel misunderstood and since I’ve been misunderstood a lot in my life, I avoid that pain.
  • I don’t want to feel analyzed.
  • I get tired of talking about the same thing. Being “that person.” Sounding like a broken record.

When you boil it all down, this is probably the biggest reason why you don’t regularly hear about or see the degree of my stress:

I WANT TO LOOK AND FEEL AS NORMAL AS POSSIBLE. 

I don’t want to look normal for your benefit. I want it for me. So even though taking a shower, fixing my hair and putting on a cute, comfy outfit to go out in public takes the alignment of stars at my house and risks masking a reality about how much I need your prayers, help and friendship — I’m going to risk it. Because for a couple of hours, I’m happy to be clean and out in a “normal” world feeling like a “normal” human being with a “normal” life. Any illusion is for me. Not for you.

And here’s one more thought for you to chew on. If I wrote about this regularly, many of you would have stopped reading my posts a long time ago. You’d be too overwhelmed, irritated, or numb. My perpetual drip of whining would wear you down and lose its oomph. (For some people, it already has. They’re not even curious and are no longer reading this right now.) 

So, consider this “rant” my way of trying to get your attention and urge you to remember there are friends around you struggling mightily with chronic hard stuff — whether or not they look like it or sound like it. Please don’t check out on them, whether they are good at how they handle their communication or not. (Doing this well is hard and even harder when you’re stressed out and/or sleep deprived.)

Thank you for listening. I’ll write again soon. 

But not too soon.


NOTE: This blog is a repost from an “Open Letter” Lisa shared on Facebook in April 2017.