This Thanksgiving I’m Grateful for Grief

This Thanksgiving I’m grateful for grief. That statement is going to make family members scratch their heads when we celebrate the holiday together and I announce that this Thanksgiving I’m grateful for grief.. Chances are, those words are making you, as a family caregiver well acquainted with grief, scratch your head as well.

Five years ago, grief wouldn’t have topped my thankfulness list. Not because I lacked experience with grief…starting as a child in a home where caring for an ill father was our family’s chief concern, then as young parent caring for a medically-fragile baby, and finally as one of three adult children managing our mother’s care as her health failed. 

During those days of constant caregiving, grief was my frequent companion. I had little time or energy to address it. Only now, with both my parents released from long suffering and our son an independent adult, have I been able to reflect upon my grief. What I have discovered in the process is yielding a cornucopia of blessings that explain why this Thanksgiving I’m grateful for grief. I’d like to share just 3 of them with you.

1. My dad lived with multiple sclerosis for 38 years. For 24 of them he lived in the home where my siblings and I were raised. When his needs grew too much for Mom to handle, he resided in a long term care facility for 14 years. Every day he lost something to his terrible disease. Dad could have complained about what he could no longer do. Instead he joked about his fumbling fingers. He grinned wide at visitors and caregivers when he couldn’t remember their names. He relished his food, even when he could no longer feed himself. Though Dad died in 1977, those memories of loss still make me cry. But they also spark gratitude for the way he showed me not only how to live well with loss, but also how he reflected Jesus. Through Dad’s graceful acceptance of his increasing incapacity, he bore silent witness of the grace Jesus displayed during his last days on earth. I am ever grateful for this inheritance, though it was born of grief.

2. Our son had numerous life-saving surgeries and procedures from birth to age 5 when his health was unstable. I grieved often over what he endured: the loss of a pain-free childhood, frequent illnesses and infections, a feeding tube, holidays spent in the hospital, and the cumulative effects of unresolved trauma. In my grief, I felt my heavenly Father weeping with me as only a parent who has observed the suffering of a beloved child can. His presence was an indescribable comfort. I still cling to it when my mama heart hurts for the inevitable struggles my adult children go through. I am grateful for the sure and steadfast knowledge that I serve a God who weeps, a gratitude I would never have known but for going through such heart-wrenching grief.

3. My intelligent, determined mother lived with dementia for 15 years. Her final 3 years were a revolving door of mental and physical suffering that resisted all efforts to mitigate it. Every day I begged God to ease her pain. He rarely chose to answer my prayer as I wanted. Before each visit to her long term care facility, I asked God for strength and wisdom about how to be her voice to doctors, nurses and CNAs. About how to ease her suffering for a few minutes. He answered those prayers in amazing ways. He granted me fierceness to stand firm in my advocacy at her care facility. He granted me clarity about what to say or read to coax Mom to smile or relive in a happy memory for a moment or two. Most important of all, he taught me how to love without expecting recognition or thanks in return. I am grateful for being a faithful presence in Mom’s final, hard years. I am even grateful for the grief I carry due to God’s decision not to ease her great pain. 

Someday in my earthly future God in his grace may reveal his reasons. If he does, there will be a future Thanksgiving when I will once again tell my head-scratching family why I am grateful for grief and write a blog post to tell you about it too.

Written by Jolene Philo

Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman is available at local bookstores, their bookstore website, and Amazon. See Jane Dig!, the fourth book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2024.

Special Needs Mom, How Are You Doing this Mother’s Day?

Special needs mom, how are you doing this Mother’s Day?

Has anyone ask you that question before? Has anyone acknowledged that your feelings may not match what cards and commercials make them out to be? Have you had the courage to acknowledge, even to yourself, the swirl of emotions that surround you as the second Sunday in May approaches?

Joy.

Loss.

Love.

Grief.

Wonder.

Fear.

Gratitude.

Guilt. 

I felt all those emotions as Mother’s Day and our son’s first birthday arrived within weeks of one another in 1983. I was a wreck that May––exhausted, worried, depleted, and unable to think straight. Though our son is now an independent adult, those early emotions tend to resurface each May. As our son got older, I became wiser about how to acknowledge my feelings and celebrate being a mom without letting difficult emotions rule the day. I hope these 5 lessons help you do the same.

Lesson #1: Enjoy your Child

Your child is a wonder, perhaps not the wonder you expected, but wonderful all the same. Take a moment to enjoy who your child is––or who she was if she’s no longer physically present. What about her makes you laugh? How does she surprise you? Why is your world better because of her? What has she taught you about love? Let your answers increase your joy in the wonderful aspects of her life and lighten your heart.

Lesson #2: Make Room for Grief

The joy your child brings is real and so is your grief. This Mother’s Day weekend make room to acknowledge this emotion for what it is––the loss of many dreams. Dreams of what parenting would be like. Dreams of how your child’s development would progress. Dreams of celebrating milestones. Write your thoughts down. Tell God how much your heart hurts. Admit how hard your grief is to bear. God knows a thing or two about loss and heartache. Let him hold you as you grieve.

Lesson #3: Put on your Mama Bear

Not the kind of mama bear who destroys everything in her path to protect her child, but the kind who uses her strength to advocate for her child, her family, and herself. This can involve big things like advocating with doctors, therapists, schools, and churches regarding resources and accessibility needs. It can also mean being the mama bear who lets other people in by introducing herself and her child to other moms and kids at the park. By joining an online or in person support group for parents of kids with disabilities. By taking advantage of a neighbor’s offer to come over with coffee and cookies to get to know her and her child. 

Lesson #4: Anticipate Adventures to Come

Thinking about the future was tough when my husband and I were busy keeping our son safe and alive. I wish I could go back to Mother’s Day 1983 and assure the woman I was then that the future held both struggles and adventures. I would want her to know that the adventures yet to come were rooted in the hard stuff our family was experiencing then. The same is true for you and your family. Since anticipation is part and parcel of future adventures, start dreaming about what’s yet to come now!

Lesson #5: Trust the God Who Is Both Parent and Child

You may not understand why God allowed your child’s disability and your parenting journey. God, however, fully understands why Mother’s Day is a mixture of joy and grief for you. He has been where you are. Cling to that truth even as you doubt his kindness and are angry with his ways. Cling to this promise that held me fast when I couldn’t hold onto him. I am praying it for you this Mother’s Day.

He who did not spare his own Son, but delivered him for us all, 

how will he not also graciously give us all things?

Romans 8:32 (NAS)

Written by Jolene Philo

Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Dance!, the third book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2023. The audio version of Book 1, See Jane Run! See Jane Run!, was released in November of 2023.

A Valentine’s Day Love Story

A Valentine’s Day love story, if present day culture is to be believed, is all about candlelit dinners, chocolates, diamonds, and declarations of undying devotion. This Valentine’s Day love story is about loving a little boy who lives with anxiety, ADHD, high-functioning autism just as he is.

“Grammy,” said our 8-year-old grandson Tad when he entered our kitchen. “Someone did something terrible in the bathroom. Come see.”

His little sister followed us into the bathroom where thick rivulets of hand soap ran down the mirror above the sink. The sister denied having had anything to do with it. Another look at the miserable expression on my grandson’s face, and I sent her out of the room.

“Did you do this, Tad?”

“Yes,’ he said with tears in his eyes.

“Why did you lie?”

He began to cry. “Because I didn’t want you to get mad at me. Are you mad at me Grammy?” 

“I’m not mad at you, Tad.” I hugged him. He hugged back. “Just disappointed. Mostly because you lied, and it’s hard to trust someone who lies. You know that, right?”

He nodded.

“Let’s clean this up together.”

We talked while mopping hand soap off of the counter, the faucet, the sides of the vanity cabinet, and the wall.

“What made you do it?” I asked.

“My mind quit working, and I couldn’t stop.”

“Did you know what you were doing was wrong?”

His lip trembled. “Yes, but the naughty part of me took over.”

I took a few seconds to decide what to say. “Everybody, even grown ups, have to fight against choosing naughty things. The only human who chose the right way every time was Jesus. He did it because he was completely human and also completely God. You’re not Jesus and neither am I. We’re humans who choose to be naughty sometimes, and Jesus still loves us.”

“Do you still love me Grammy?”

I set down my rag and hugged him again. “I will always love you Tad. I may not always like what you do, but I will always love you. You know that, right?”

His arms tightened around my waist, and my torso felt his nod. When he pulled away the cleaning rag in his hand left a smear of soap on the sleeve of my sweater. 

I loved him enough not to say anything. Instead I asked him to unscrew the cap to the liquid soap dispenser. It took him a few tries but he got it done. “Now look inside.”

“It’s empty,” he said.

“I just filled it yesterday. Do you know what that means?”

His eyes widened. “I used it all.”

I got the jug of hand soap from the cleaning supply cupboard. He was surprised by how much soap it took to refill the dispenser. I said, “I know you feel bad about what you did, and I think that feeling will help you keep your mind working if you’re ever tempted to waste hand soap again. But if it does happen, I want you to tell me the truth.”

“I will. And I’ll help you clean up the mess too.”

“Good. But you’ll have to one more thing too,” I said to this little boy who loves to save his money and then go to the store with his dad to buy Legos.

“What?”

“Pay five dollars to replace the soap that was wasted. That might help you choose the right way too.”

“I love you, Grammy,” he said. “And I will to never have to pay you five dollars. But you will still love me if I do, right?””

My eyes filled with tears when he smiled at me, his expression devoid of any trace of anxiety. I knelt down, took his precious face in my hands, and said, “I will always love you, Tad. Always.”

Written by Jolene Philo

Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. She's also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Sing!, the second book in the West River cozy mystery series, which features characters affected by disability, was released in November of 2022.

Every season has its challenges and joys.

Every season has its challenges and joys. 

God has been injecting that truth into my heart with particular intensity this week. 

I wish he would stop.

He began this exercise in my character development with a pain in my left side and lower back.  It was a familiar issue that usually clears up after 1 or 2 visits to the chiropractor. This time, the pain has gotten worse. 

I’ve been hobbling around the house like an old person, counting the hours until my doctor’s appointment tomorrow. Then I remembered that I am getting older.

Now I’m fine with the perks of this season of life. Being old enough to retire and pursue my own interests. Paying 80 bucks for a lifetime pass that gets us into national parks for free. Having coffee with friends when I want.

But age-related hip pain? I am not fine with that, and let God know loud and clear. At which point he injected a dose of truth into my dissatisfied heart.

Every season has its challenges and joys.

I tested the truth by taking a trip down memory lane.

The first stop was the birth of our son. This was a season of joy, followed by a special needs diagnosis and interspersed with challenges inherent to his condition. These continued throughout his early childhood. 

Through them all God brought just the right specialists, new medicines he could tolerate appeared on the market, and friends gathered round to bear us up.

The second stop was parenting him as a teenager and into young adulthood. We know now that he was living with undiagnosed post-traumatic stress disorder (PTSD). That led to many challenges. But watching his intelligence, creativity, humor, and talents develop brought great joy. 

In those years God led our son to gifted teachers, safe places, and hard experiences that eventually led to diagnosis and effective treatment.

The third stop began when our son and daughter started adulting in earnest. Our biggest challenge in this ongoing season is keeping our mouths shut and offering advice and assistance only when they ask for it. Another challenge is watching them pick themselves after they fail. This is also a season of great rejoicing when they pick themselves up and persevere. When they ask for help and respect our advice. As they encourage us to develop strong relationships with their kids. 

Every day we experience God’s blessings as he shepherds our family toward his will.

The fourth and final stop was the season of walking my mother through her last years of life. She died this past June after a slow and painful deterioration of her body and mind. The challenges were so constant, the joys so fleeting that my siblings and I, along with our spouses, rejoiced as she took her last breath and entered eternal life with Jesus. 

Through our tears, we sensed God’s peace and pleasure in the love and care we had given her for so long.

Today I saw a picture I took on Mom’s final, good afternoon. Her eyes were bright, her mind clear, and her smile infectious. Her joy made me cry, and I wondered, “Is the pain in my hip related to the pain in my heart?”

In answer God pointed to the truth he’d made clear at every stop during my walk down memory lane.

Every season has its challenges and joys, and he had been with me through all of them.

Whatever the doctor says tomorrow and however long my pain lasts, I can rest in knowing that he is with me in this season, too.

Written by Jolene Philo

Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. She's also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Sing!, the second book in the West River cozy mystery series, which features characters affected by disability, was released in November of 2022.

It’s Going to Be a Different Kind of Mother’s Day

It’s going to be a different kind of Mother’s Day for you this year.

God whispered those words to me as I waddled into the doctor’s office in early May of 1982. Never mind that my husband and I wouldn’t see our first child until May 23. My husband and I had felt our baby’s kicks for months. God’s whisper assured me that I was already a mother.

What I didn’t realize when God spoke to me was that He was preparing me for what only He knew was coming. Our baby would be born with a serious birth condition. It would make every Mother’s Day for several more years very different from what I expected. 

Some would be spent in the hospital with our medically fragile baby.

Some would be spent debating whether or not we should rush him to the hospital.

Some would be spent rejoicing that our miracle baby had become a healthy adult.

All would be spent realizing that had our boy been born in a different day and age, we would have had him with us for only a few days.

As the second Sunday in May approaches this year, I hear God whispering to me once again. 

It’s going to be a different kind of Mother’s Day for you this year, Jolene.

This time, God’s not referring to our son. He’s doing well. This time God is talking about my mother.

She is 94 and believes she is 103.

She is in hospice care.

She has lost over twenty pounds in the last four months.

She is, I know, soon to leave this world.

This is going to be a different kind of Mother’s Day, the last in a string of 66 years celebrating with her on this earth. As the day approaches, I can’t quit thinking about the similarities being with her in her long term care facility and being with my infant son during his many hospital stays. Things like…

Spooning Cheerios and only Cheerios into their mouths at breakfast.

Finding ways to keep them from falling out of bed.

Opening window shades each morning to let the light in.

Shopping for clothes to fit their constantly changing bodies.

Talking to doctors about medication changes.

Reading picture books that lead to delighted smiles.

Stroking their cheeks when they cry out in pain.

Holding their hands while they get injections.

Getting a care professional to clean them up when needed.

Pushing a call button for trips to the bathroom.

Sitting beside their beds and wishing I could do more.

Beyond all those similarities, these are the things that stand out to me. 

The absolute privilege of caring for my vulnerable loved ones. 

The absolute assurance of being right where I should be.

The absolute presence of God with us.

The absolute holiness of the first and last days of a life.

The absolute certainty that while Mother’s Day 1982 and 2023 were and are different from others I’ve known, God crafted them for my son and mother’s best good, to His great glory.

Written by Jolene Philo

Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. She's also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Sing!, the second book in the West River cozy mystery series, which features characters affected by disability, was released in November of 2022.

Beyond Labels: Seeing the Beauty in EVERY Child

Do you ever feel like your child is looked down on because of their disability or special need?

In the world, you often see a differentiation between the “haves” and the “have nots.” Those in sports are esteemed more highly than the shelf stocker at Walmart. The advice of those with the largest following on social media or YouTube is more sought after than the grandfather or grandmother up the street.

Sadly, this can even be true at churches. I hear of many parents on this journey in special needs walking through the church doors looking for community and eventually walking away because they are made to feel like their child is a burden. Congregation members treated their child as less than and not really valued.

If this is your story, I’m sorry. This Easter season, I want to assure you that God does not see your son or daughter as less than.

Here are 5 ways that we can see this in the Bible. 

1. Your child is created in God's image

"So God created mankind in his own image, in the image of God he created them; male and female he created them." - Genesis 1:27 (NIV)

This verse reminds us that every person, including those with special needs, is created in God's image and is therefore uniquely valuable and important in God's eyes.

 

2. God sees beyond physical limitations

“But the Lord said to Samuel, ‘Do not consider his appearance or his height, for I have rejected him. The Lord does not look at the things people look at. People look at the outward appearance, but the Lord looks at the heart.’”

– 1 Samuel 16:7 (NIV

While human beings often focus on physical appearances and abilities, God looks at the heart. He sees beyond a person's disabilities to their true character and potential.

3. God sees my child's struggles and cares for them

"The LORD is close to the brokenhearted and saves those who are crushed in spirit." - Psalm 34:18 (NIV)

As a parent, it can be heartbreaking to see my child struggle with challenges or disabilities. But I take comfort in knowing that God sees their struggles and cares for them deeply. God is close to those who are brokenhearted, and I believe that He is with my child every step of the way.

4. We are all equal in Christ

“There is neither Jew nor Gentile, neither slave nor free, nor is there male and female, for you are all one in Christ Jesus.” – Galatians 3:28 (NIV)

In this passage we can see that in Christ, there is no distinction between people based on their race, gender, or social status. This includes people with disabilities, who are equal members of the body of Christ. God values each person equally and desires for us to love and accept one another just as Christ has loved and accepted us (John 13:34-35).

5. God has given your child a unique gift or talent to share with the world

"Each of you should use whatever gift you have received to serve others, as faithful stewards of God's grace in its various forms." - 1 Peter 4:10 (NIV)

This verse reminds us that every person, including those with special needs, has unique gifts and talents that can be used to make a positive impact on the world. By valuing and nurturing these gifts, we can help our children to realize their full potential and make a positive difference in the world around them.

This Easter season, as we celebrate the death and resurrection of our savior, I want to encourage you that not only does our heavenly father know and love you. In the same way, He fully loves your son or daughter. He does not view them as a burden or less than.

He tends his flock like a shepherd:
    He gathers the lambs in his arms
and carries them close to his heart;
    he gently leads those that have young.

~ Isaiah 40:11 (NIV)

Written by Jonathan McGuire

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Jonathan McGuire  is the dad of two boys and co-founder of Hope Anew, a nonprofit that guides the beat up, battered, and worn out parents of children impacted by disabilities and special needs through the spiritual and emotional challenges they face to Christ-centered hope and healing.

Celebrating Easter with 7 Sensory Friendly Ideas

What was Easter like for you growing up?

 I remember waking up Easter morning and going to church. Spring was in its beginning stages and there was a general excitement in the air as we celebrated Christ’s resurrection. The church would be stuffed to capacity with families sitting shoulder to shoulder in the pews. After church we would make our way to various family reunions, where we would laugh, play games and eat too much food.

Now for many of us as parents of children impacted by disabilities and special needs, Easter celebrations look a bit different. The idea of sitting in a cramped pew and the normal Sunday morning church routine having been thrown out the window sends chills up our back, as we all know change can be difficult.

Navigating family get togethers can give us a sense of dread and the idea of doing a community Easter Egg Hunt may be laughable.

So how do we make Easter a true celebration and communicate its significance to our little ones?

Here are 7 ideas that you can try at home.

1. Easter-themed scavenger hunt: Create an Easter-themed scavenger hunt with clues that relate to the story of Easter. For example, the first clue could be "Find the palm branch that people waved when Jesus entered Jerusalem" and the next clue could be hidden with a palm branch. If you want a little help with this, check out these resurrection easter eggs.

2. Easter Story Sensory Bin: Create a sensory bin or tray filled with materials that relate to the Easter story, such as miniature palm branches or palm leaves, rocks, and a small tomb. Your child can explore the materials with their hands and feel the different textures while you talk about the story of Easter.

3. Visual aids: Use picture books, illustrations, or even videos to help your child understand the Easter story. You could also create a visual schedule or social story to help your child understand what will happen during Easter celebrations. One possible picture book that your child might enjoy is:

   "The Tale of Three Trees" by Angela Elwell Hunt - This touching story follows three trees as they each become part of Jesus' life and ministry, teaching children about the power of faith and sacrifice.

4. Music and movement: Sing Easter songs or play music that relates to the story of Easter, such as "Jesus Loves Me" or "This Little Light of Mine." You could also use simple movements or gestures to help your child understand the story, such as pretending to wave palm branches or holding your arms outstretched like Jesus on the cross.

5. Role-play: Use props or costumes to act out the Easter story with your child. For example, use a toy donkey to represent Jesus' entry into Jerusalem, or use a blanket and pillow to create a tomb for Jesus. This can help your child understand the story in a more interactive and engaging way.

6. Resurrection garden: Create a miniature garden with your child to represent the Easter story. Use a small planter, soil, grass seed, and miniature figures to represent Jesus, the tomb, and the women who discovered the empty tomb.

7. Easter movie night: Watch an Easter-themed movie or cartoon with your child, such as "The Prince of Egypt" or "VeggieTales: An Easter Carol." Afterward, talk about the story and its meaning, and encourage your child to ask questions.

So which one of these do you think you will try? Let me know in the comments.

"But Jesus called the children to him and said, 'Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these,'" (Luke 18:16 NIV).

Written by Jonathan McGuire

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Jonathan McGuire  is the dad of two boys and co-founder of Hope Anew, a nonprofit that guides the beat up, battered, and worn out parents of children impacted by disabilities and special needs through the spiritual and emotional challenges they face to Christ-centered hope and healing.

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The Days Are Long, but the Years Are Short

“The days are long, but the years are short.” 

I repeat this phrase while I sit on the couch listening to my 7-year-old grandson read for a half hour every evening.

Each time he turns a page, he says something like, “Wow, Grammy! What do you think that is?” or “I wonder what will happen next?” He ignores the words on the page and launches into several winding, imaginative explanations.

My grandson really, really likes to talk. And use his imagination. As for the reading part? Not so much. 

Which is why I eventually have to suggest, “Read the page and find out.”

He follows my suggestion––he can read more fluently than he believes––and finds out. Then he turns the page and begins the same process all over again. 

To contain my impatience, I whisper to myself, “The days are long, but the years are short.”

One evening as we read, my mind wandered back to when our son was young and medically fragile. When complications arose––maybe he had a fever, refused to eat because of an oral aversion, or vomited his food because of an esophageal blockage––our days were very, very long. 

Should we wait to see if he got better? Or worse?

Could we wait until morning to go to the doctor? Or call him right now?

Should we race to the emergency room in our car? Or should we call the ambulance?

Not only were the days long, but also the nights. 

When our son turned four I told my mother, “The years since he was born feel like a lifetime. Maybe it’s because we haven’t gotten a complete night of sleep since he was born.”

Mom smiled and said, “The days are long, but the years are short.”

My grandson turns a page and explains, “Look at that shark! What’s it’s name?”

His words draw me into the present. I smooth down his honey-colored rooster tail and inhale his little boy smell. He leans into me, and together we sound out a challenging word. He looks up at me and smiles in triumph. 

“I’m getting the hang of this, Grammy!”

He is getting the hang of reading, and I am getting the hang of the fickleness of time.

I think of my son, whose early years required several corrective esophageal surgeries before he got the hang of eating and swallowing. He’s a middle-aged man now, healthy and independent. 

Where did those years go?

I look down at my grandson and smile, 

grateful for this precious half-hour together, 

grateful for this reluctant reader’s victory over a pesky word, 

grateful his dyslexia that brings us together each night,

grateful for the joy of being part of his life, 

grateful for the wisdom gained through the special needs of my son and my grandson.

The days are long and the years are short, and in the eyes of God, both have eternal value.

Written by Jolene Philo

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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. She's also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Sing!, the second book in the West River cozy mystery series, which features characters affected by disability, was released in November of 2022.

Organizational Strategies Are Saving My Life Right Now

Organizational strategies are saving my life right now, and my 94-year-old mother is the reason.

Our family is in a season similar to the early 1980s when my husband and I were parenting a medically fragile baby. Back then one medical crisis after another meant dropping everything, buckling our son into his car seat, and racing to the doctor’s office or hospital. Nowadays, calls from Mom’s long term care facility require snap decisions regarding her medical care or unexpected trips to her bedside.

Thankfully, I cut my organizational teeth as my son cut his baby ones. The process was drawn out and painful for both of us. Still, I’m grateful for lessons learned in those years because they taught me that organization can ease the stress of caregiving. Several organizational strategies are saving my life right now, and today I’m sharing seven of them.

#1: The Lazy Genius.

Kendra Adachi is host of the The Lazy Genius Podcast and author of two amazing organizational books, The Lazy Genius Way and The Lazy Genius Kitchen. She approaches organization as principles to apply in your circumstances rather than as tips that worked in her life. Her method helps me “lazy genius” how to deal with my caregiving situation, and it can do the same for you.

#2 Sticky Notes.

3-M introduced Post-It® Notes in 1980. I wrote notes to the substitute teachers who took over my classroom on a moment’s notice. Now I use them to write notes to myself about what I was doing before being called away. They are also handy for instructing my husband, daughter, son-in-law, and grandkids what to eat or not eat in the fridge or freezer. Those stickies are assurance that there will be food when I arrive home exhausted.

#3 Freezer Meals.

Yep, another food strategy. Because nothing stresses me more than having to think of what to feed my family when I’m emotionally spent. And nothing eases my stress like pulling out a freezer meal and leaving a sticky note with supper instructions (see #2) before dashing out the door to go to Mom. When I menu plan for the upcoming week, I make sure 1 meal is a recipe I can double, triple, or quadruple. 1 batch is for supper, and the rest are packaged and put in the freezer.

#4: iPhone’s Reminder App.

My daughter created several shared grocery lists using this handy iPhone App. Yes. Another food strategy. This time it’s because not having all the ingredients when ready to make a quadruple batch of something is also very stressful. And with 3 adults in the house who share cooking and shopping duties at several grocery stores, the shared lists let us communicate without convening a family meeting each week. Which I likely would miss when called away because of Mom’s latest health crisis.

#5 Electronic Library List.

This electronic list is available to card-carrying patrons of our local library. After I search for a book, DVD, or other item at the library website, I can click a button and add them to my list. When I go to the library, I pull up the list on my phone, find the item on the shelf, and delete it from the list. Your library probably has a similar system. For our family, which is deeply invested in reading, this list is better than sticky notes.

#6: Paper Calendars.

Wall calendars work for me in ways that electronic calendars don’t. It’s always in the same place in my kitchen. I menu plan and write big events on mine with Sharpie marker so a month’s worth of meals (More food. What can I say?) and events are visible at a glance. I also prefer a paper planner over an electronic one because flipping pages is easier than swiping screens.

#7: Pill Organizers.

Whether they hold vitamin and mineral supplements, pills prescribed by a doctor or over the counter medications, these organizers cut down on the “Did I take my pills?” or “Did I give my kids theirs?” confusion. I filled mine every weekend until a Facebook friend posted a picture of the 4 pill organizers she filled once a month. I was an instant convert. Not only does this practice save time, I can see what’s running low and order more right away. This decreases the likelihood of running out when Mom’s next health crisis hits.

These organizational strategies are saving my life right now. Bottom line––being organized allows me to better focus on Mom’s needs when they arise. However as you and I know much of a caregiver’s life, or the life of the loved ones we care for, can’t be organized or controlled. In those situations, God calls us to rest in His control over all things. When we do, He will reveal His sovereignty and provision in ways that lead us to deeper faith, greater worship, and confidence in Him.

Written by Jolene Philo

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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. She's also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon. See Jane Run!, the first book in the West River cozy mystery series was released in June of 2022.

My 4 Tips for Surviving a Special Needs Train Wreck

My 4 tips for surviving a special needs train wreck became part of my life decades ago. Our son, who’d had major corrective surgery at birth, was thriving.

Or so we thought.

Then he pulled away one night while I nursed him. His eyes rolled back in his head, and he quit breathing. I screamed for my husband, who improvised his own version of baby CPR.

It worked.

I ran for the phone to call for an ambulance. Minutes later we were on our way to Rapid City Regional Hospital where the problem was diagnosed. The next day a medical transport plane flew my son and me to the University of Nebraska Hospital in Omaha for more corrective surgery. The surgery was a success, his recovery slow, steady, his long term prognosis good.

Even so, I struggled.

Our son’s health setback gobsmacked me. My husband, my parents and siblings, my friends were hundreds of miles away. I was alone on my birthday. From my perspective, the situation felt unsurvivable.

Yet we survived.

Our young family (including our son who is now 40) endured several more complications that required unexpected hospital stays. Over time I developed these 4 ways to cope with the train wrecks that are part of raising a child with disabilities and special needs.

Tip #1: Note the Ways God Prepared You

Sending our baby off to surgery again was hard. Even so, I was a better prepared parent the second time around. During the stay at Rapid City Regional, my husband went home and packed my suitcase with clothes and items we knew made hospital stays easier. Also, the hospital was a familiar place. I knew nurses in the neonatal intensive care unit I left them a message, and several of them visited. Those details showed how God had prepared the way, that this hospital trip was part of His plan. Let the evidence of God’s sovereignty over your family’s train wreck do the same for you.

Tip #2: Find Blessings Along the Way

Several blessings surprised me as the days unfolded. As a nursing mother, I had a seat on the medical transport plane. In a pediatric wing, even in 1982, I was treated like royalty. I stayed in my son’s room. They provided toiletries, a shower, a breast pump, and meals at no cost. Because my basic needs were taken care of, I had energy and time to advocate and care for our son. When we as parents look for and are buoyed by blessings in hard times, our capacity to care for our children grows.

Tip #3: Ask for Prayer and Practical Help

The prayers of friends and families made a difference during our son’s many surgeries and recoveries. I learned to ask people to pray in specific ways, and they did. When I finally requested help for specific, practical needs, the people who responded revealed God at work. When you ask for practical help, God will make others the answers to your prayer. Can you think of a better way to cope when life is hard?

Tip #4: Tend to Your Needs

When there’s a special needs train wreck, our first priority as parents is to protect our kids. I spent days protecting our son after his surgery. Eventually he stabilized. The nurses provided good care, and I could tend to my own needs. But I felt guilty and selfish paying attention to myself instead of him. How can we avoid that trap? By tending to our needs when our kids are in good hands. Those hands may not be as capable as ours, but they are good enough for a short time. Take advantage of those good enough hands while we can. so we can take care of our needs and return refreshed, recharged, and able to survive the ride.

Written by Jolene Philo

Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. She's also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon. See Jane Run!, the first book in the West River cozy mystery series was released in June of 2022.

Experiencing Joy

This is the day the Lord has made, let us rejoice and be glad in it. (Psalm 118:24 NLT)

Today, yes today my soul is filled with joy.

And although I wish I could say that is my normal, I have to admit there have been many days that I have wasted the gift of the present day by fretting about the future. Oh, today though, I stopped and breathed in the experience of being present in the moment and discovered a bounty of blessings all around me. I was met with gladness, with pure joy that overflowed in my heart… you know the type of joy that makes you just want to get up and dance and skip around the room…yes that type of joy!

It was not an elaborate vacation or hiking in a flowering field, that brought such joy. No, it was sitting in the stands of my son’s Special Olympics track and field event.

The world seemed to have stopped as I took in the scene of over 100 athletes who all had challenges but not one single individual showed the struggle or the pain on their faces. I watched athlete after athlete, my son included, crossing the finish line with smiles and shouts of joy at their accomplishment. Here were individuals that had to persevere through so much to just make it to the event not to mention the physical or sensory obstacles that stood between them and the finish line. It did not matter if they came in first or last, their focus was locked on the finish line. I saw athletes stop running to go to another athlete’s side who had fallen, I saw athletes walking with what looked to be a debilitating limb, I saw athletes in wheelchairs powering through with their hands… all with one goal in mind, to finish!

I leaned further and further into the moment. I embraced the present and I saw modeled right in front of me how to receive the day as the Lord intended and I watched what it meant to be truly glad in it. And at that moment, I heard a whisper in my spirit say “Child, every day can be like this when you receive the day as a gift from Me and focus only on being present in it!” I breathed in again absorbing the lesson my Savior was teaching me at this moment . A lesson on how he longed for me to receive the gift of the day from Him and embrace it with gladness.

But some days are really hard on this earth, aren’t they? Some days the pain of broken relationships, or of illness, or of job loss, or of loss of life can take us down and steal our joy. But our Lord declares even those days, He has made! For me embracing this truth meant I needed to move the truth out of my head and into my heart. Such a journey would allow me to say through the pain, that there is gladness in my heart and rejoicing in my spirit even on such hard days.

As I sat and watch men and women with such gladness pushing through so many obstacles, tears of understanding of what it looks like to rejoice and be glad came to my eyes. And my soul was being transformed to see with the eyes of my heart. At that moment, sitting there on those stands, I was taking a profound lesson on joy.

So let me ask you a question, are you sitting with joy in your heart today? If not, what is holding you back from accepting the gift of the day and truly being glad in it? If you are struggling to find joy through the pain, then would you consider inviting God into your doubt, your hurt, and your fears? Come to Him authentically and let your heart be molded to His likeness so that you can receive every day (even the painful ones) as a gift from Him and experience joy!

Written by Carrie Park

From Carrie’s heart…

By God’s grace, my heart was taken captive by Him and I was brought to my knees as an adult acknowledging my need for my Savior.  God has filled my life as a wife, a mother of five, and as a leader of people. And through this journey, I have discovered a passion of mine to reach, encourage, and inspire others to live a thriving life with our Savior, Jesus Christ. 

​So come, grab a cup of tea settle in and find encouragement from Carrie’s blog Abiding in the Between here.

Determining Where To Start as Your Child with Special Needs Nears Adulthood

Determining where to start as your child with special needs nears adulthood is no easy task. There are legal matters to address such as special needs trusts and guardianship, advocacy strategies to pass on to kids, and much more. The list is full of important things to address. Because your child’s eighteenth birthday is not yet imminent, they may be ignored.

You know what I’m talking about, right?

I’d like to give you a hand in determining where to start as your child with special needs nears adulthood. So today I’m sharing three–count ‘em–just three ideas. Whether your child is five or fifteen or somewhere in between, completing these three steps can help you jumpstart the process.

#1: Obtain Hard Copies of Your Child’s Medical Records

Electronic medical records are a great invention. They can also be very hard to access when hospitals and clinics update their computer systems. Who knows what will be in place when your child reaches adulthood? Therefore, it’s wise to obtain paper copies by contacting the practices of the doctors and therapists who treat your child. They can tell you how their process works and what costs may be involved. Most likely, you will be sent an electronic file to download and print out. If your child’s medical history is complex and ongoing, you may want to request records every year or two to update your paper files.

 #2: Write Down Your Memories of Your Child’s Medical History

Write down your child's medical history. You probably remember what treatments (for physical, mental, and emotional ailments) your child received, but your child might not. Our son has no explicit memories of the tests, treatments, and 7 surgeries he went through before he was 5. So when he was a young adult, I wrote a narrative that included the hospitals where the surgeries took place, the doctors and surgeons who treated him, and anything else I could remember. Your memories can fill in the gaps in your child’s medical records and shows that your child is a person, not a patient.

 #3: Share Your Child’s Medical History with a Trusted Person

Make two copies of your child’s medical records and history when you print them out. Slip one set in a manilla folder, label it clearly, and file it with your important papers. Package up the other set and give it to a trusted family member or friend. Choose someone who cares deeply about your child (include your child in the selection if at all possible) and will remain involved in your child’s life should something happen to you. Invite that person over for coffee and review the records and history with that person. Meet every few years for to update the paperwork and go over everything again.

Completing these three steps will ease your anxiety as your child nears adulthood. They may also help you build momentum to address other issues related to that important life change, so the transition is as joyful and smooth as possible.

 Written by Jolene Philo

Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She recently co-authored Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities with Dr. Gary Chapman. Her blog for parents raising children with special needs and disabilities can be found at www.DifferentDream.com.

Feeling a Bit Lost?

Have you ever felt lost? I’m slightly directionally challenged, and before GPS there were times I’d be driving and suddenly I was in a town or city where I hadn’t planned on being. Sometimes that was scary, sometimes inconvenient, and sometimes it was fun as I discovered new places.

I accepted this about myself and used it for my benefit. When I moved to a new location, I’d just drive around, get lost and find my way home (with the help of a map) repeatedly. After doing that a few days, I had a pretty good mental map of the area and would no longer get lost or need to refer to a paper map very often.

The thing is, I had a goal, a destination. Even though I didn’t take the most direct path, I was not wandering aimlessly; although, if anyone was watching, it might have appeared to them like I was. I had a destination in mind, I just didn’t know the route to get there. Sometimes my life feels like that.

There have been seasons in my life where I’ve found myself in totally unknown, unfamiliar territory – like when my son was reacting to every food I fed him and I had no idea what was going on or what to do. Or when it was obvious he had significant developmental delays and major sensory issues that prevented us from going to most public indoor spaces and turned our lives and routines upside down. Not even upside down, it obliterated any type of normality.

It was just like showing up in a town where I hadn’t expected to be and having no idea how to get to my destination. Only, there was no map for reference to find my way. I just had to try one route and see if it got me where I wanted to go. And if it didn’t, try another.

Does this doctor have answers? No. Okay, how about that doctor? No. Well, what about this therapy or that intervention? No answers in western or allopathic medicine? How about in alternative medicine? And I just kept wandering, referencing various research, and trying different routes until we made progress in the direction of our desired destination – the ability to eat foods without reactions, improve cognitive function, and stabilize or decrease sensory sensitivities.

Wandering, feeling lost, and not having clear direction feels uncomfortable. It’s scary. Thankfully, I have a personal relationship with God who loves me, knows all, and sees all.

Even though I may feel lost and not know where I am or how to get where I’d like to be. He knows. He knows not only my practical needs, the destination He has in mind for me, but also what my heart, mind, and soul need along the way. If I stick with Him, ask for, and follow His guidance, not only will I get to the destination He has planned for me, I’ll be a better person when I get there. (If you don’t know Him, I’d be happy to introduce you.)

I’ll leave you with a poem I love from Corrie Ten Boom. If you don’t know Corrie’s story, she was a Dutch lady who helped shelter Jews during the Nazi occupation of the Netherlands. She went to a concentration camp for it and lived to tell her story. So, she knows a bit about dark, hard circumstances in life when you don’t understand and don’t know what’s ahead on the journey. Her book The Hiding Place is a worthy read!

To download your own copy of this poem, click here.

Sarah McGuire is the Mom of two boys and co-founder of Hope Anew, a nonprofit that guides parents to Christ-centered hope and healing. You can follow Hope Anew on Facebook here.

The Holiday Season Can Be Hard for Caregiving Families

The holiday season can be hard for caregiving families. I spent Halloween, New Year’s Eve, and my birthday the hospital with our infant son. Because of his precarious health when he was young, several times we made the difficult choice to stay at home for Thanksgiving and Christmas instead of spending it with extended family.

I didn’t like making those choices. I didn’t want to miss the holiday traditions I’d experienced growing up. On our birthdays, we chose the menu for dinner and whatever dessert we desired. Thanksgiving and Christmas were spent with either Mom’s extended family or Dad’s, the women gathering the day before to prepare feasts that culminated in the most delicious homemade pies I’ve ever eaten.

At the beginning of each holiday when our son was hospitalized or we chose to stay home, I grieved what our young family would miss. However, as we experienced each holiday with people who weren’t part of our extended families, I found pockets of joy.

 We met nurses and doctors who gave up time with their families to keep our baby alive.

Our son received balloons and toys in the hospital.

We talked on the phone with our parents.

We received newsy letters and cards from extended family members.

We spent holidays with friends, sampling their unique Thanksgiving food traditions.

I perfected the family recipes for pie crust and fillings and brought them to share with friends.

Our 15-year-old son, when hospitalized for his final surgery, met his favorite NFL quarterback.

As each pocket of joy became part of my life, I could acknowledge my very real grief about what we missed without being devastated by it. I could move forward in faith, knowing that God would salve what we had lost with what would be gained. I could look forward to pockets of joy.

 The holiday season can be hard for caregiving families, but there are simple ways to insert pockets of joy into them.

Here are a few for you to try.

1. Prepare the same holiday feast as your far away loved ones and eat together during a Zoom or FaceTime call.

2. Schedule a time for extended family to watch a holiday movie and real time chat about it on social media.

3. Distribute care packages, prepared by your family and friends, to hospital workers who are caring for your child during the holidays.

4. Create fun family traditions that can be practiced at home, in the hospital, or wherever else you find yourself during the holidays.

The holiday season can be hard for caregiving families, but pockets of joy can be powerful. Our son is almost 40. When he reminisces about the holidays of his childhood, he doesn’t mention what he missed. He mentions pockets of joy–favorite toys, movies watched together, learning to make pies and other holiday treats. And best of all, having his picture taken with Elvis Grbac, the quarterback of his beloved Kansas City Chiefs.

Written by Jolene Philo

Jolene Philo is the mother of a son born with life-threatening special needs and the daughter of a father severely affected by multiple sclerosis. In her 25 years as an educator, she integrated children with special needs into her classroom. She’s written 5 books about caregiving, special needs parenting, and childhood PTSD. She recently co-authored a book with Dr. Gary Chapman about how parents of kids with special needs can use the 5 love languages in their families.

Jolene speaks at conferences around the country and internationally, facilitates classes about childhood trauma for educators, and trains special needs ministry leaders and volunteers. She blogs at www.DifferentDream.com. She and her husband live in Iowa.

To The Caregiver Who Never Gets Time Off

“Be still and know that I am God.” Wait…don’t leave yet! Hang with me for just a bit, I promise this is for you. On my mind and heart this week has been the mom (or caregiver) who never gets time off or time away. I don’t know your name, but I’ve been you and I’ve been praying for you.

You have a child who needs constant care, like CONSTANT, like, you can’t go to the bathroom and have those 30 seconds of peace alone, or drink a warm cup of coffee with a satisfied sigh – a cold sip 2 hours later, with one hand occupied with your child, maybe.

No one else gets it. No one understands. Your child’s needs are so unique and significant no one else is either able or willing to care for him/her for a couple hours so you could just sleep, or breath, or step outside and look at the sunshine. You feel so alone. I feel your pain. I feel the weight you carry. I see the conflict in your soul – you LOVE your child! But you just need a break.

 And then there’s Psalm 46:10, “Be still and know that I am God” - like there’s time for that!? When your child is never still or quiet and you are on duty all day and all night, how are you supposed to find time to be still in God’s presence so you can know Him better? It feels like one more thing on our to-do list that will never get done, doesn’t it? Those impossible things that are forever out of reach.

Have you ever read Ps 46:10 and paid attention to the surrounding verses?

I’ll summarize them for you (because, of course, your hands are full and you can’t toggle to that other screen or grab a Bible right now)…there are earthquakes, mountains crumbling, landslides, turbulent oceans, flooding, nations in chaos, kingdoms failing. Then, “Come, see the glorious works of the LORD…He causes wars to end throughout the earth. He breaks the bow and snaps the spear...” And here it is, “Be still, and know that I am God! I will be honored by every nation. I will be honored throughout the world. The LORD of Heaven’s Armies is here among us; the God of Israel is our fortress.”

Psalm 46:10 isn’t a command to literally be still and spend lots of quiet time with Him. It’s not a command to do something. It is a promise that He is a refuge, fortress, strength and that He has all of heaven’s armies to help address those troubles.

It’s our job to go to Him as our refuge and then “be still.” The Greek word used there for “be still” literally means “sink, relax” it could also be said “stop striving and let go” and watch His awesomeness (aka “know that I am God). Doesn’t “sinking” and “relaxing” (it makes me think of a bubble bath) while someone else who is unconditional love, all-powerful and with legions at His command takes over sound absolutely blissful?

This verse is not a call to do one more thing. It is a call for you to stop striving and to rest in Him, His strength, His protection, His care.

On those days and nights where we feel worn so thin we think we might just wear away to nothing and we don’t even have the energy to think anymore, it’s past time for us to cry out to Him as our refuge, fortress, help, Commander of Heaven’s Armies – it doesn’t have to be eloquent, even, “help” is sufficient - and see what He does.

I’d love to hear about it. I’d love to put a name to these prayers I’ve been praying for “the mom who doesn’t get a break.” Drop me a message, I’d love to pray for you by name!

Written by Sarah McGuire

SARAH MCGUIRE IS THE MOM OF TWO BOYS AND CO-FOUNDER OF HOPE ANEW, A NONPROFIT THAT GUIDES PARENTS TO CHRIST-CENTERED HOPE AND HEALING. YOU CAN FOLLOW HOPE ANEW ON FACEBOOK HERE.

When The Rug Gets Yanked Out From Under Your Life

The last year and a half has been a doozy for me, and I’d guess it has been for many of us for different reasons. I mean, 2020-2021, seriously? Over this year and a half my personal inner-life journey has taken me on quite a ride and while circumstances have offered up different challenges that haven’t resolved yet, my personal journey has been life-giving.

How does that happen? How can we not have circumstances align with what we want or need, yet have our heart, mind, & soul thrive anyway?

I’ll give a caveat that my most basic physical needs were met. I had a roof over my head, heat, food, water, sleep, and my immediate family with me whom I love dearly and who love me. The rest of life, including a house, friends, church, church family, homeschool group, and a significant chunk of our income, well, those were stripped away and my health was already greatly diminished, so that’s where I was a year and a half ago.

How do we move forward when the rug gets yanked out from under us and our life, as it has been, as we liked, as we dreamed of and worked to build, suddenly crumbles? For some of us that day is when our child gets a diagnosis that we know will change our lives forever. For some, a job loss. For some, a support system we depend on suddenly isn’t dependable or even available. What then?

Finding a private place to melt into a pile on the floor and cry it out with a bag of Lindt chocolates (my personal favorite – the chocolate, not the melting into a sobbing mess) close at hand may come first. Screaming to God about it might happen too. Grief – however that looks for you – is important. Acknowledging the pain (in a healthy way – not hurling anger on everyone around us) is critical! If we bury it, it will fester and cause other problems.

After scraping myself off the floor and expressing my feelings and thoughts to God repeatedly, this is what I did. I made a conscious choice that when I stepped out of my beloved house and into my new (not what I would have chosen) residence, I would NOT complain. Complaints would not cross my lips. I could still acknowledge & grieve the sadness of the losses, but I would not complain about the present.

It took several months, but the resolution to not complain morphed into intentionally looking for things to be thankful for – every day. And when challenges arose, to look for what I could be thankful for in the situation. I didn’t deny that it wasn’t ideal or that it wasn’t hard or unwanted, but I’d look for the good in it.

Instead of griping about the hot water running out 6 minutes into my shower, I could be thankful for the hot water I did have and get my hair cut shorter so I could take quicker showers. Guess what, I got lots of compliments on my shorter hair. It suits me better!

Instead of complaining about things breaking, falling off, or getting damaged on our new home (an RV), I could focus on being thankful for a resourceful, capable, problem-solving husband and it became part of the adventure.

One of the latest examples, I was commenting to a friend how I felt bad for my kids and how they weren’t getting to experience a typical (even typical for homeschool) high school experience with friends close by, sports, group activities, etc. during these critical years. She graciously called my attention to all they are getting to experience. A few hours later as I reflected on the conversation, I realized an unfavorable trait (that isn’t the kind that can be overcome with teaching or training) that had characterized one of my sons a good part of his life had completely disappeared over the previous year. Oh my, I’d been focused on what my husband and I weren’t able to provide for them and what I thought was lacking and instead there was so, so much he had gained that was worth invaluably more!

I have a long way to go in overcoming my negative thinking and making thankfulness my default, but one day at a time, I get closer to that goal!

How about you, have you ever taken a period of time to intentionally focus on annihilating complaining and to be purposefully thankful? How did it go? What happened?

Written by Sarah McGuire

SARAH MCGUIRE IS THE MOM OF TWO BOYS AND CO-FOUNDER OF HOPE ANEW, A NONPROFIT THAT GUIDES PARENTS TO CHRIST-CENTERED HOPE AND HEALING. YOU CAN FOLLOW HOPE ANEW ON FACEBOOK HERE.

Caregiver Fatigue

It’s real. It’s literal. It’s pervasive. It’s all consuming. When we haven’t slept a full night, half a night, or maybe not even a full hour at a time in days, weeks, months, maybe even years we get kind of tired, right? Sleep deprivation is serious business.

Yet, who else could possibly believe this is often life for the parent of a child with special needs.

I bumped into a parent of a newborn in a store the other day and they mentioned how tired they were because their baby’s days and nights were switched. At about a week old, that’s not unexpected and we can smile through it knowing these days (and nights) will quickly pass.  It is just temporary. But when that becomes life day in, day out, night in, night out; it really takes a toll on us.

I know when my child’s needs were significant, and I rarely slept for a full hour at a stretch for 18 months. I was exhausted. I was discouraged. I felt so alone. We were relatively new to town and I had no support system outside my husband who was working a regular schedule. I was at my breaking point. Did I mention, I was exhausted? Like really, really exhausted.

I was still going to church many Sundays. The pastor became aware of my exhaustion one Sunday and in the following weeks he would ask me how I was doing. Over the course of those weeks, my answer didn’t change. I was still tired. Yet, as the weeks rolled by and my answer, “I’m tired” stayed the same, the look I got from him changed from caring to condemning.

A few years later, my husband and I were meeting with another pastor regarding Hope Anew and coming alongside parents of kids with disability and special needs and he commented, “I wonder what goes through the mind of a parent when they wake up in the morning knowing what’s ahead for that day.” I replied, “You slept?” He smiled and nodded in acknowledgement of his assumption and the gap of understanding even as he was trying to the best of his ability to understand.

As caregivers, it’s easy to feel forgotten, unseen, not understood because so few people have lived this life and our circumstances. They can’t understand the load we are under and the challenges we are battling through every. single. day and night. We often focus on just making it through the next hour or minute and can’t think beyond that.

I know someone who does care. Who does see. Who does understand. We are not forgotten or alone. These words got me through many a screaming (my baby), crying (both of us), rocking chair night, “He tends his flock like a shepherd: “He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young.” – Isaiah 40:11. I was a mother with my “young” and it promises that He will gently lead me. That He gathers me in His arms just as I was holding and rocking my little one in my arms. And He promises that to you too.

 Written by Sarah McGuire

SARAH MCGUIRE IS THE MOM OF TWO BOYS AND CO-FOUNDER OF HOPE ANEW, A NONPROFIT THAT GUIDES PARENTS TO CHRIST-CENTERED HOPE AND HEALING. YOU CAN FOLLOW HOPE ANEW ON FACEBOOK HERE.

Mama Warriors

You know the old joke where you put a sticky note on someone’s back with a message and they walk around ignorant with others secretly laughing at them? As missionaries for 18 years, there have been many times we’ve had a target painted right on our back – by Satan. A few times, when things got unusually bad, I felt that target stuck there and took it off through prayer, prayer, more prayer, praise, thanksgiving, and faith.

Unfortunately, more often I ignorantly went on with my life, pushing forward as a wife, mom, caregiver, missionary, striving to make headway and often having it sabotaged. When you know that sticky note is there, it can be easy to take off. When you don’t realize it’s there you go on ignorantly struggling against all the wrong things.

I'm grateful for Naomi Brubaker and her insights on spiritual warfare . It's real. Yes, it can be over-hyped. But that doesn't make the fact that it is a reality in some instances any less real. Don’t throw the baby out with the bathwater. I’ve often been more guilty of being naïve to the influence and reality that Satan and his minions have in my life, family’s lives, and our circumstances and then I didn’t counter his influence.

If that’s true of you, I’d encourage you to spend some time praying for insight into areas of your life where Satan may have a stronghold or influence and then praying for God’s protection over your lives and booting Satan out. You’ll likely have to do that repeatedly in different areas, different ways, different times and circumstances. He is not a gentleman. Just because you told him to get lost doesn’t mean he’ll never try attacking again. If you’ve claimed Jesus as your Savior, you have the upper hand. Satan can attack (just ask Job) but you can counter and win through prayer!

Prayers that win spiritual battles include some or all of these:

1.     Praise – of God and who He is (SO POWERFUL!)

2.     Thanksgiving – to God for what He has done and good things He has given

3.     Truth:

a.     Acknowledging the reality of sin or wrong thinking in your life

b.     Standing in the truth of the Word of God and countering lies with it

4.     Faith – in God, who He is, His power, His authority, your standing, rights and authority in Him

5.     Word of God – it is your sharpest sword and is what Jesus used against Satan’s temptations in the wilderness. Read it, speak it, pray it! 

Lastly, if aren’t making headway or gaining victory on your own, and haven’t already, ask others to stand and battle with you in prayer! Sometimes it takes an army.

Let’s be mamas who stand up and fight for ourselves, for our husbands, for our kids, for our families, for our friends! We have powerful weapons, we just need to wield them!

Written by Sarah McGuire

Sarah McGuire is the Mom of two boys and co-founder of Hope Anew, a nonprofit that guides parents to Christ-centered hope and healing. You can follow Hope Anew on Facebook here.

Spiritual Warfare

Until recently, I felt like spiritual warfare was a way of over-spiritualizing experiences in life and the World.  It felt like people would claim spiritual warfare for a flat tire or the things that occurred to make someone late for bible study.  It felt hooky to me, but I knew there was truth to this idea of the enemy, at work against what God was trying to accomplish in my life. 

Early on in my time on church staff, some interpersonal conflicts began to impede the ministry work.  There was an unresolved tension and no real reason for these conflicts.  A wise friend/coworker gently guided me through the idea that the enemy was working in these places.  That his goal was to derail our ministry efforts and the harder we worked for the good of God, the harder the enemy would attack.  Until you feel these attacks first hand, it can feel like over-spiritualization of experiences of people giving power to the enemy for coincidences and inconveniences.  

Having the knowledge and tools to fight this spiritual battle is critical to all believers.  We are fighting a battle against an enemy, the bible makes that very clear.  Ephesians 6:11-12 states:  “Put on the full armor of God, so that you can take your stand against the devil’s schemes. For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.”

I should not be surprised when experiencing these attacks or seeing others experiencing spiritual attacks.  I believe worship is one of our battle weapons in the fight against the enemy. I find the words of worship music can drown out the lies of the enemy or send him running.  There is a song that I love that I feel sums up the protection God has for us, the weapons we have and what we are fighting. The song by Upperroom “Surrounded” starts out by saying clearly that God has prepared us a table in the presence of our enemies, praise and thanksgiving are my weapons. It repeats over and over “When it looks like I’m surrounded, I’m surrounded by You.”  The entire song feels like a defense to the attack of the enemy and it’s true, we are not alone in these battles, we are surrounded by the Spirit of God.  

In learning more about what the enemy is trying to do in my life, directly in opposition to what God is trying to do, I felt ill equipped. Knowing the more I pursued God’s love for me and my family, the more the enemy would be aware of my weak spots and try to enter.  My marriage, my kids, the ministry work I was doing, my friendships and more are all at risk for an opening to be seen by the enemy and to have him step in.  It only takes a little space for the enemy to get into our minds. The hard part is then removing him from these spaces and places in our life.  I am by no means an expert or even remotely equipped on this topic, but have come face to face with the enemy in my life.

Most recently, I remember a few months ago 2 very dark days filled with calculated spiritual attacks.  My kids were impacted, husband, dog, my own well being and the enemy even terrorized my dreams.  These two days were draining and difficult.  I felt like my world was in a delicate balance and one more thing added to the day would send it into complete implosion.  At the end of these exhausting days of what truly felt like a battle, I knew without a doubt that God ruled supreme over all.  He is on his throne and in control.  

We could see in the days leading up to this spiritual battle that tension was building.  We began to put on the armor of God and prepare.  We have a dedicated prayer team that we email out regular prayer requests to and we immediately sent an emergency prayer email giving the details of what was going on.  Immediately people all over the US and world began praying for us.  We guarded our hearts with truth and went into these challenges with immense peace, very little fear and a lot of unknown. How would our lives look different if we called on a group of believers more often to intentionally pray over our needs, our battles and our need for strength in these times.  What would a challenging day, doctors appointments or IEP meeting feel like if all over the nation we were calling on each other to offer critical prayers on our behalf?  I have to believe it would make a huge difference on the orientation of our hearts and potentially the forces at play in our lives. 

Not every day necessitates this full on warfare, but every day has opportunities for the enemy to take hold of pieces of our life.  Keeping close to the tools that will reorient our focus will guard against any effort of spiritual attack.  Some ideas I have to combat ongoing, insidious attacks are playing and worship songs, praying out loud, establishing healthy, regular rhythms with God to remain in step with His will for my life and memorizing scripture.  Being in a practice of pruning away the things in my own life that take away from God’s glory is also important.  Once the enemy is in, it is difficult to get him out.  

I know that the enemy will use any possible place to threaten the work of God in my life. Nothing is safe from him, unless under the protection of Christ. There is another worship song that my daughter and I love that we often turn on loud by Elevation Worship, “See a Victory” . The chorus goes, “Cause my God will never fail. No, My God will never fail. I’m gonna see a victory, I'm gonna see a victory…” It goes on repeating this truth, that we WILL see a victory because God never fails. His power is perfect and stronger than any demon or Satan. Be aware of the enemy’s schemes and be ready to support those who are impacted by his evil plans. I know my family will come under attack again and hope the body of believers will circle around us in offering a protective blanket of prayer. We will remain firm in the truth that God wins, always.

Written by Naomi Brubaker

Naomi is a mom of 3 girls ages 7, 5, and 2.  Her oldest daughter is diagnosed with ADHD and a visual processing disorder.  Her family lives in Richmond Virginia where Naomi leads the special needs ministry at their church.  Her background in special education and ability to understand parents from her experiences with her daughter give her a unique perspective in her role at the church.  Naomi loves to run, sew and take walks with her husband with any free time she has. 

Thriving When First World Problems & Caregiving Problems Dominate Our Daily Lives

First world problems and caregiving problems are dominating my life right now. They’ve made re-entry after a month-long trip to celebrate my husband's retirement rather rocky. Here are a few examples of what’s been happening.

The installation of our new heating and cooling system required punching numerous holes in our walls…including my office. The work was supposed to be completed while we were gone, but won’t be done for weeks or possibly months.

That’s a first world problem.

Hospice re-evaluated my mother after she had bouts of major confusion and agitation while we were gone, but she still doesn’t qualify for their services.

That’s a caregiving problem.

The morning after a heavy rain, we discovered a leak in the new addition just as a workman came to deal with a backed up basement drain.

First world problem followed by first world problem.

My mother keeps asking when she gets to move in with us. I keep telling her that as long as work delays continue and our walls are pocked with holes, it’s not safe for her to move in.

That’s a caregiving problem solved by a first world problem.

That final confluence of first world problems and caregiving problems got me thinking about how they’ve impacted my life in the past.

Our newborn son’s condition at birth was an age old problem. His diagnosis and surgery at birth caused a host of complications and subsequent surgeries. Those complications were first world problems.

Had our son been born in a different country, not to mention in a different day and age, he wouldn’t be alive today. In other words, first world solutions for his condition caused first world problems and caregiving problems that our family dealt with for years.

During those years, all my thoughts, all life revolved around my son.

Was he getting sick again?

Did he need another surgery? Another test? Another procedure?

Could I pump enough milk to nourish his body?

Would he ever sleep through the night so we could sleep through the night?

Only rarely did my focus move from the immediate, the urgent, and the life-threatening to a broader perspective.

Only rarely–very rarely–could I move beyond myself and our son and see the blessings God had bestowed through our first world problems.

Our son was alive.

Many surgeons had the training to correct his birth anomaly.

His prognosis was good.

We had a supportive network of friends and family.

We had excellent insurance.

We had good jobs and understanding employers.

On the few occasions when I found the wherewithal to reflect upon the goodness of our first world problems in combination with the caregiving problems they caused, my heart beat faster. My breath caught. Tears flowed.

I saw the goodness and wisdom of the One who will wipe away every tear from our eyes in a world where there will be no more death, mourning, crying or pain (Revelation 21:4).

I saw, not the first world and the problems it creates,

nor my caregiving world and its problems,

but the world to come.

The promise of that world is where you and I can find the hope, compassion, strength, and endurance needed to thrive when first world problems and caregiving problems dominate our daily lives.

Written by Jolene Philo

Jolene Philo is the mother of a son born with life-threatening special needs and the daughter of a father severely affected by multiple sclerosis. In her 25 years as an educator, she integrated children with special needs into her classroom. She’s written 5 books about caregiving, special needs parenting, and childhood PTSD. She recently co-authored a book with Dr. Gary Chapman about how parents of kids with special needs can use the 5 love languages in their families. Jolene speaks at conferences around the country and internationally, facilitates classes about childhood trauma for educators, and trains special needs ministry leaders and volunteers. She blogs at www.DifferentDream.com. She and her husband live in Iowa.