A Sword Will Pierce Your Soul

A Sword Will Pierce Your Soul

by | Jan 24, 2022 | Different Dream, Encouragement, Special Needs Parenting

A Sword Will Pierce Your Soul

“A sword will pierce your soul.” Our adult Sunday school teacher quoted Luke 2:35 and glanced around the room. “Have your children ever pierced your soul?”

I nodded emphatically. The teacher gave me a quizzical look. Could he sense that the sword that pierced my soul after our baby boy was born was piercing it once again? That I was once again hearing the doctor describe a condition I hadn’t know existed until then?

“Your baby has a tracheoesophageal fistula,” the doctor said. “He needs immediate surgery or he will die.”

Diagnosis was the first of many swords to pierce my soul in the years to come. Some had everything to do with his medical condition:

  • Complications requiring more surgeries
  • Feeding issues
  • One GI issue after another
  • Frequent viruses and bacterial infections
  • PTSD as a result of early, invasive medical procedures and treatments

Some had nothing to do with his health issues at all:

  • Children being mean on the playground
  • The call after he was in a car accident
  • Girlfriends we weren’t crazy about
  • Life choices that seemed at odds with our values
  • A tenuous relationship during his young adult years

“A sword will pierce your soul,” the Sunday school teacher repeated. “If parenting pierced the soul of Mary, who raised a child who was fully human and fully divine, then we know that it will pierce our souls too.”

The teacher mentioned other instances when raising Jesus caused his parents pain:

To read the rest of A Sword Will Pierce Your Soul, visit Key Ministry’s blog for special needs parents.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email.

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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’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.

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Who Do You Say Jesus Is?

Who Do You Say Jesus Is?

by | Jan 18, 2022 | Different Dream, Encouragement

Who Do You Say Jesus Is?

Who do you say Jesus is? Seems like an easy question at first glance. Guest blogger Sandy Ramsey-Trayvick found assurance when Jesus showed her who He is while her son with special needs dealt with major medical challenges.

In Mark 8:27- 29, we find Jesus questioning His disciples:  

On the way, He asked His disciples,

“Who do people say I am?”

They replied, “Some say John the Baptist,

some say Elijah

and others say You’re one of the prophets.

Then Jesus turned to them and asked them,

“But what about you? Who do you say I am?”

Peter answered, “You are the Messiah.”

During the Christmas season it was pretty easy for those of us who follow Christ to answer Jesus’ question. As we celebrated His birth, it was easy to say that Jesus is the Son of God, Savior of the world.

But what about on other days when you don’t have a holiday to remind you, who do you say that Jesus is then?

As special needs parents, we have plenty of circumstances that might cause us to question who Jesus is to us. Although we know from Scripture that He is “the same yesterday, today, and forever;” our circumstances, if we let them, can steal our focus and make us think that somehow–in our current hardship–He has changed. We can end up doubting His goodness and faithfulness and begin pulling away from Him–sometimes without even realizing it.

In Matthew 16:13-15, we find this same scene of Jesus questioning His disciples. But in Matthew’s account of the story, Jesus responds to Peter, calling him “blessed” because His “Father in Heaven” had revealed the truth of Jesus’ identity to Peter.

And our Father in Heaven has revealed this same truth to us in His Word. When our circumstances ask us, “Who do you say Jesus is now?,” His Word helps us to know and say what’s true.

I took the opportunity recently, after my son experienced an unexpected health crisis, to consider who Jesus had been to me and my family during this challenge. If He were to ask me, ”Who do you say that I am?,” how would I respond?

Looking back, I’d say He was:

  • A Safe Harbor and Comforter: As I struggled with fear and confusion over my son’s declining health, the Lord invited me to share my honest concerns with Him–with the safety of no condemnation. He heard my heart and offered the promise of His comfort.
  • A Warrior: As I prayed about my son’s health, the Lord assured me that He would fight for him. (Exodus 14:14)
  • An Ever-Present Protector: I asked the Lord to protect my son from fear as he underwent major surgery. The Lord responded that He had gone before Myles and would never leave him. Therefore, he need not fear. (Deuteronomy 31:8)
  • Healer: The Lord provided a new kidney for Myles.
  • The Way: He provided a way forward that exceeded our expectations.
  • Awesome: Throughout our journey, the Lord demonstrated His great love, His power, and that His plans are for our good.

That would be my answer.

What about you? If the Lord wants to know who you say Jesus is, how would you respond?

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email.

 

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Sandy and her husband of 31 years are parents to three young adult children.  Their son was diagnosed with multiple disabilities 21 years ago after a devastating illness as a toddler.  Following her son’s diagnosis, Sandy quit her job to become his full-time caregiver and advocate.
Sandy works now as a Certified Professional Coach with a focus on coming alongside other special needs parents – empowering them and their families to recognize choices that will enable them to reclaim freedom, renew purpose and reactivate joy on their unique special needs journey.
You can learn more about Sandy, her work and her blog at www.UNDisabledLIVES.org.  You can also reach her at Sandy@UNDisabledLIVES.org.

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Unhappy New Year

Unhappy New Year

by | Jan 13, 2022 | Different Dream, Encouragement, Special Needs Parenting

Unhappy New Year

 

Guest blogger Kimberly Drew brings perspective and help for weary caregivers. 

This new year is not ringing in so well for me. I would tell you about everything that has made this an unhappy new year thus far, but it would use up my whole article! I can pretty much sum up my spirit as weary. I’m weary.

I’m so very weary of COVID and it’s losses.

I’m weary of caregiving,

of major changes in our church where my husband is youth pastor,

weary of social media speculations and complaints,

weary of uncertainty and battles with anxiety,

weary of working through forgiveness in relationships where I felt wronged and was spoken wrongly of,

weary of watching others suffer.

There have been other seasons of life where this word described me, but I can’t quite recall how I managed to shake it. However, I can look back over my 42 years and recall the goodness and faithfulness of God.

I decided to take a walk down memory lane with the attitude of Psalm 77. Please take the time to read the entire psalm, though only verses 10-12 are quoted here.

Then I thought, “To this I will appeal:

the years when the Most High stretched out his right hand.

I will remember the deeds of the LORD;

yes, I will remember your miracles of long ago.

I will consider all your works

and meditate on your mighty deeds.”

I would love to share a few of these deeds and miracles with you from our life. I tried to type them all out, but can only fit a few. The list just keeps going and going. Here are some highlights from recent years that are helping me combat weariness in this unhappy new year:

  • Our first daughter survived a traumatic birth and our church provided gas, hotel stays, and food money for the long month ahead in NICU.
  • An on-call pediatrician pulled up a rocking chair to her bedside and was there each time she went into cardiac arrest. He saved her life.
  • My A-team of 11 people was assembled. It included multiple therapists, a pediatrician, an IEP team at school, and several specialists to give her the greatest life possible. She defied the MRI that said she should be in a vegetative state and never walk. Hers was the biggest smile in the room that she walked into all on her own.
  • The Lord changed my heart on some very important issues. He broke my pride, tore out my selfishness, and continues to rebuild me. He’s still working on it.
  • My husband was given a job out of his career field in a time when we needed to heal from the hurts of the church we had worked in. His call to youth ministry was affirmed, confirmed, and he is in his 13th year at our current church.
  • The Lord himself restored my joy and protected me from depression after delivering a stillborn son.
  • We sold our house in faith hoping for something with 2 bathrooms so we could dedicate one of them to our daughter’s toileting needs. A friend sent an anonymous check for $5,000 toward our new house. Another took care of major septic needs. We were able to purchase a house in foreclosure that doubled our square footage, came with 3 bathrooms, and a lower mortgage payment than previously.

I won’t say that I’m less weary, but the exercise of recalling the Lord’s hand in my life encourages me as no quick fix could. That’s why I encourage you to make your own list if you are experiencing an unhappy new year, too.

I will praise you Lord, for you are good!

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email.

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Kimberly grew up and went to college in the small town of Upland, IN. She graduated from Taylor University with a degree in Elementary Education in 2002. While at TU, she married her college sweetheart and so began their adventure! Ryan and Kimberly have four amazing kids on earth (Abigail, Jayden, Ellie, and Cooper), and a baby boy waiting for them in heaven. Their daughter Abigail (Abbey) has multiple disabilities including cerebral palsy, a seizure disorder, hearing loss, microcephaly, and oral dysphagia. She is the inspiration behind Kimberly’s desire to write. In addition to being a stay-at-home mom, Kimberly has been serving alongside her husband in full time youth ministry for almost fourteen years. She enjoys working with the senior high girls, scrapbooking, reading, and music. You can visit Kimberly at her website, Promises and Perspective.

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EA/TEF Awareness Day 2022 is Here!

EA/TEF Awareness Day 2022 is Here!

by | Jan 4, 2022 | Different Dream, Encouragement, How-Tos, Uncategorized

EA/TEF Awareness Day 2022 is Here!

EA/TEF Awareness Day 2022 has arrived. Usually Different Dream devotes all of January to EA/TEF Awareness Month. For over ten years, I have issued invitations on Facebook for parents and survivors to share their stories. In the past, responses came so thick and fast, the monthly calendar filled up quickly.

This year there was plenty of initial interest after the invitations were sent. Follow-through was a different matter. I don’t know if sick kids or pandemic burnout or bad timing or holiday demands was the culprit. Whatever the reason, my Plan A resulted in a January blogging calendar that is as bare as Old Mother Hubbard’s cupboard.

Moving on to Plan B, I hereby declare that EA/TEF Awareness Day for 2022 is here! In honor of this special day, this post features some of my favorite EA/TEF posts from past years. I hope you enjoy them and pass them along to raise awareness about a condition that affects 1 in every 3,000 babies born around the world.

#1

My First EA/TEF Memories: Mary Monahan wrote this post as a 61-year-old EA/TEF survivor. In it she shares her earliest hospital memories and what she calls the “dark ages of this condition’s treatment.” This post will make new parents grateful for treatment advances since then!

#2

My Special Needs Mom Worries Never End: I wrote this post a few years back when my EA/TEF survivor son was in his mid-30s. He is not a fan of me obsessing about his health, so I wrote this post to quit doing so. Maybe it will help you, too.

#3

Our Bittersweet EA/TEF Symphony: Not many people consider EA/TEF to be music to their ears, but mom and musician Janae Copeland does. In this post she shares what she’s learned while conducting the symphony of her daughter’s life.

#4

So You’re a NICU Parent: If you’re the parent of an EA/TEF baby, you are also a NICU parent. Brianna Lennon was a NICU parent in 2015 after the birth of her son Ryan. With humor and grace, she explains several parenting skills unique to our particular breed of NICU kids.

#5

When a Kid with EA/TEF Finds Courage…: We know that our EA/TEF kids are among the bravest people in the world. Our kids have to discover that truth for themselves. In this article, Lori McGahan tells readers how her son Brandon discovered how courageous he is.

#6

6 EA TEF Warnings Hidden from New Parents: Nanette Lerner relates 6 warning signs she watches for while raising her son. These warnings allow parents to be proactive rather than reactive as they care for their kids.

#7

EA/TEF Repair Is One Chapter in Your Child’s Life: This post by Cori Welch puts EA/TEF repair surgeries into perspective. Cori also shares 5 things she wishes she’d known before her baby was born in 2018.

#9

Why EA/TEF Awareness Month Is Grace Awareness Month: When our son was born in 1982, I could only see the pain and the worry and the challenges surrounding his condition. As he grew, I began to see the grace surrounding it too.

This list is just a smattering of the Different Dream guest posts about EA/TEF. You can make EA/TEF Awareness Day last a little longer by typing “EA/TEF” in the search bar to find more great stories.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email.

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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’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.

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The Mountain of Special Needs Parenting

The Mountain of Special Needs Parenting

by | Nov 17, 2021 | Different Dream, Encouragement, Grief

The Mountain of Special Needs Parenting

The mountain of special needs parenting is similar to Heather Johnson’s summer hike in Glacier National Park. In today’s post, she shares three Bible verses that gave her family hope and increased her faith then and now.

In August, my husband Todd and I hiked the Highline trail in Glacier National Park. As the name of the trail implies, the path cut along the side of a mountain and was so narrow near the beginning that a thick wire cable drilled into the rock served as a handrail, lest a misstep cause a trip and tumble over the edge.

Past the narrow path, the grade steepened. I wondered if we’d reach our destination. Though our lungs and legs ached, step-by-step, we made it. Viewing the contour line of far-off mountains, I thought about how far our family has come in 24 years.   

In 1997 and 1999, we adopted our three kids (six, four and nineteen months) from an orphanage on the outskirts of St. Petersburg, Russia. Our hopes were high. So was our naiveté.

Todd and I didn’t know then that all three of our kids had numerous invisible disabilities that would affect all our lives significantly and permanently.

To be honest, my goal for years was simply surviving. But by the grace of God and many loving, generous friends and professionals, we’ve made it this far. Last year, Todd and I became empty nesters.

Yesterday, Anna turned 30. She lives ten minutes from us in a cozy apartment by a creek with a resident manager on site 24/7 to provide for her needs. During the week, she packages nuts and bolts in a sheltered workshop/factory for people with disabilities. Her smile brings joy to all she meets.

Zach (28) and Nick (23) live semi-independently and function fine with helpers who provide supportive scaffolding with finances, problem-solving, judgement, and planning. They both work hard and are happy with their factory jobs.

I look back on our child-raising years and see that the mountain of special needs parenting was like our mountain climb in Glacier. Both were steep and grueling at times. Both caused ache. But God was with us, step-by-step. Sometimes when one must slow because of a narrow and difficult path, one comes to know God more intimately. That’s what happened to me. I needed something/someone stronger than myself to reach my destination and my strength came from God through prayer and His word. Three verses helped anchor me to hope and still do. Maybe these will help anchor you too.

Though he slay me, yet I will trust in him. Job 13:15 KJV

God and I have had many a wrestling match over the years. I’ve cried, screamed, and pounded the ground with my fists. I’ve doubted God is good. I’ve joined the chorus of unbelievers who ask, If God is good, why does He allow so much suffering?

 Perhaps one must wrestle with suffering to answer that question. Job did.

As for me, if suffering is what it takes to bring me closer to God’s heart, to trust God more, to love God, myself, and others more, then I think suffering is a good thing. Never pleasant. But good.

I believe God has allowed suffering in our lives to drill trust deep into our souls, securing us, keeping us from falling over the edge of ourselves.

Give thanks to the Lord, for his is good, for his steadfast love endures forever. Psalm 136:1 ESV

Every day, no matter what, we can give God thanks simply because He is good. Even more, He loves us unconditionally and unendingly forever. Who could ask for more? When life gets tough and we think we want for this or that, I remember that God is all I really want, all I really need. And yet, God gives more.

As I look back, I see how God provided perfectly for our every need—wonderful teachers, tutors, physical therapists, occupational therapists, speech & language therapists, special education teachers, reading tutors, orthopedic and ophthalmology surgeons, psychiatrists, psychologists, cardiologists, case managers, mental health therapists, and prayer warrior friends who never left us in our toughest times. In fact, some of our kids’ caregivers have become my closest friends.

The LORD is my strength and shield. I trust him with all my heart. He helps me, and my heart is filled with joy. I burst out in songs of thanksgiving. Psalm 28:7 NLT

Simply said, I never need to be strong by myself. Neither do you. Not to climb the mountain of special needs parenting. Not to help ourselves. All we need is to lean into the LORD, draw on His strength, shelter behind His shield, trust him, do the next right thing, and give thanks joyfully (sometimes through tears) for all He’s already done. What He’s already done proves what He’ll always do. Our God is our trustworthy Deliverer and Provider, faithful and true.

After all these years, our challenges haven’t changed. But God has championed our challenges and calmed our hearts. We’re at a place where we can see with fresh perspective that our God sees us, hears us, loves us, and never stops providing perfectly for us. He’s doing and will continue to do the same for you. Lean into Him, step-by-step, and breathe. For indeed, come what may, God is good. God is kind. God’s got you and your kids. Just like us. We’ll all make it together with God.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email.

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Heather MacLaren Johnson and her husband have three kids, all five and under when adopted from Russia. Now young adults, all need regular help with their multiple, permanent, invisible disabilities stemming from prenatal exposure to alcohol (FASD).

Heather has B.S. in Education and a doctorate in Clinical Psychology. She is the author of Grace, Truth, & Time: Facilitating Small Groups That Thrive and has published personal essays in The Wonder Years: 40 Women Over 40 on Aging, Faith, Beauty, and Strength (Kregel Publications) and Your Story Matters: Finding, Writing, and Living the Truth of Your Life (NavPress). She’s writing a memoir about her family’s journey through hidden disabilities and mental illness to encourage others to greater intimacy with God and each other through times of desolation and lament.

Heather and her husband of 27 years live with two horses, two dogs, two barn cats, and a bunch of silk plants she just dusts. Heather writes and photographs at www.truelifewithgod.com.

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Is That Everything That’s Going to Happen?

Is That Everything That’s Going to Happen?

by | Oct 25, 2021 | Different Dream, Encouragement, Grief

Is That Everything That’s Going to Happen?

“Is that everything that’s going to happen in the next book?” The concept editor for my cozy mystery series, who happens to be my daughter, pointed to the short stack of notecards I’d set on the kitchen table.

I stared at the cards, more than a little ashamed by my lack of preparation for our appointment. We’d scheduled our meeting to hash out the plot of this book almost a year before. In the meantime, my mother’s health had taken a turn for the worse. Her struggle had ushered in a season of uncertainty and change. I was becoming all too familiar with being unprepared and unfocused.

“Well,” I said, “I know how the story starts, and I know how it’s going to end. But I have no idea about what’s happening in the middle.”

My daughter nodded. “I understand. Now give me a few minutes to read through what’s here.”

While she read, my mind wandered to a September forty earlier when my husband and I found out we were going to become parents. We spent the next 8 months getting ready for our baby’s arrival. We took childbirth classes, transformed the guest bedroom into a nursery, and bought a car suitable for a family of three. We purchased diapers and onesies and sleepers and more.

We did everything in our power to be ready for our baby’s arrival. Even so, after he was born and his life-threatening condition was diagnosed, we felt totally unprepared to be his parents. We knew only two things: our son’s life had begun and that it would end–perhaps far sooner than we hoped. As for what would happen in the middle, we had absolutely no idea.

 To read the rest of Is That Everything That’s Going to Happen? visit the Key Ministry blog for special needs parents.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email.

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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’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. The first book in her cozy mystery series, See Jane Run!, features people with disabilities and will be released in June of 2022.

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