Raising a Child with Special Needs is Like Writing a Book

Raising a Child with Special Needs is Like Writing a Book

Raising a Child with Special Needs is Like Writing a Book

“Raising a child with special needs is like writing a book,” I thought after emailing my completed manuscript to my editor recently. “During my pregnancy I had a vague outline of what parenthood would be like. And I prepared a plot outline before writing this story. But in the beginning, the details of the birth and the book were foggy and surprising.”

The first surprise regarding our son came twelve hours after his birth. He was diagnosed with a tracheoesophageal fistula, also known as EA/TEF, and flown to a hospital far, far away for corrective surgery.

Boom! My husband and I became supporting characters in our son’s adventure story. It was full of unexpected setbacks, victories, sorrow, and joy.

We went places we never imagined.
We made decisions we felt unprepared to make.
We met people who helped us along the way.
We discovered we were stronger than we knew.
We found the source of that strength in God’s faithful presence throughout the story.

Our son is forty now. At my aunt’s funeral a few months ago, he put his arm around me while I cried. He gives my husband and me advice. His story is ongoing. As we age, he will play a role in our stories, too.

Every day I see that raising a child with special needs is like writing a book.

Forty years after our son’s story began and a few days after sending that manuscript to the editor, I am once again in a situation similar to my son’s early days.

To read the rest of Raising a Child with Special Needs is Like Writing a Book, please visit the Key Ministry website.

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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. 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.

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When Life Turns Out Differently Than You Had Planned

When Life Turns Out Differently Than You Had Planned

When Life Turns Out Differently Than You Had Planned

When life turns out differently than you had planned, the first reaction may be fear or anger. Or a sense of being overwhelmed. Four years ago, guest blogger Kelly Simpson was completely overwhelmed when her husband was deployed overseas and their son Oliver was born and quickly diagnosed with tracheoesophageal fistula (EA/TEF). She’s here today to share five realizations that helped her overcome her state of overwhelm.

A job you love, a white picket fence, a caring and loving spouse, children—everyone can picture the life they want to make for themselves. I sure had mine all mapped out! In early 2019, my husband, Jeremy, left for development overseas. This was our first deployment, and our first child was due in the next eight weeks.

“It will be a quick eleven months.” That’s what I told myself. I was ready to take on a deployment as a solo parent to a newborn with a full-time job.

The next eight weeks passed quickly and at thirty-nine weeks, our precious baby boy was born. April 5th was a day with many emotions—happiness, joy, and love—but also despair, heartache, and loneliness. Other feelings I can’t describe quickly set in when Oliver was diagnosed with tracheoesophageal fistula (EA/TEF).

I felt overwhelmed. How could I take care of my child with these “problems”? Nineteen days in the NICU, nine or more procedures and surgeries in his first year of life. This was not in my expectations of becoming a mom.

I struggled for at least the first year with feelings of being overwhelmed and wondered “why me?” Here are a few things I learned during Oliver’s first three-and-a-half years of life:

1. I had to hand over my expectations to God—many times, everyday. What I have planned and expect from my life is nowhere near the goodness that He has planned for me. When I am in shock or despair, He is not. When I hand my expectations over to Him, there is room for His way and His glory.

2. Be content in my role. Shewww! This was so hard and can be an everyday battle. I struggled with “Why me?” for many months. Every person can think of their “Why me?” reasonings to argue with God. But they really amount to nothing—they will not change my circumstances. So, the more quickly I got over myself and looked for God and His purpose in my story, the more quickly I was able to embrace my new outlook on life and life to the fullest.

3. Jesus came to give me life to the fullest. John 10:10 states “…I have come that they may have life, and have it to the full.” I can have life and have it to the fullest—best, more than I could ever imagine even with these circumstances. And you can too! Consider Daniel in the lions’ den from Daniel 6. God did not pull Daniel out of the den of wild and hungry lions. God did not change Daniel’s circumstances. He simply came down into the circumstance to be with him. God gave Daniel his presence in verse 6:22, “My God sent his angel, and he shut the mouths of the lions.” God’s presence is with us in every circumstance. If God sent His presence to Daniel, he will surely come down here to be with me, right here, in this situation, during the many doctor visits, surgeries, and procedures, and during the night while I lie awake crying. His presence is a promise I hold on to.

4. God will use this circumstance for His glory—submit it all to Him.There’s such a weight lifted when I surrender my circumstances over to God. Whatever your circumstances are, your feelings are valid and real. I needed someone to tell me that in my new walk. But I could not stay there and let the feelings fester. My trials would not go to waste, and neither will yours. Your circumstances, trials, and feelings allow you to empathize with others who are hurting. Even though your situations may not be the same, your feelings may be. You will be able to help validate others and bring them comfort and wisdom. Don’t miss out on this opportunity. It will bring you and God great joy!

5. Do not be afraid to set boundaries. Others will not always understand and that’s okay. If others are not being respectful of child/family member’s needs, set boundaries. Do not feel bad for doing so. During these times you need those who are supportive and helpful to you.

I hope these realizations ease your sense of overwhelm when life turns out differently than you had planned.

Additional Links:
Pediatric Tracheoesophageal Fistula and Esophageal Atresia | Children’s National Hospital. (n.d.). 
Tracheoesophageal Fistula. (2012, April 29).

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Photo by Geran de Klerk on Unsplash

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Kelly has lived her whole life in Kentucky. She and her husband, Jeremy, have an almost-four-year-old son, who, born during a deployment, was diagnosed with tracheoesophageal fistula (EA/TEF). She has always felt a calling to serve others and is living the dream as an Army wife, middle school teacher, and now, as an encourager to those who are living a dream different than they had planned.

Author Jolene Philo

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God Uses Whatever It Takes to Grow Our Reliance on Him

God Uses Whatever It Takes to Grow Our Reliance on Him

God Uses Whatever It Takes to Grow Our Reliance on Him

God uses whatever it takes to grow our reliance on Him. Acts 9 tells the story of Paul on the road to Damascus where he simultaneously saw Jesus, heard Him speak, and went blind for a couple days.

That’s what it took to set Paul on the path of faith and reliance.

My personal road to Damascus began forty years ago today when I gave birth to a son. Twelve hours later he received a diagnosis and earned an airplane ride to a hospital in another state. That’s what it took to put me on the path to faith and reliance. I could do nothing for our tiny baby except entrust him to God.

I didn’t see God. I didn’t hear Him.

Instead, I found myself on the Damascus road of parenting a medically fragile baby. Sometimes, my husband and I could see one step ahead. Usually, we were traveling blind. We could do nothing except rely upon God to show us the way.

Forty years later, I can confidently say that He did.

My confidence was bolstered today when I was studying the story of Paul on the Damascus road in Acts 9. Paul’s experience on a dusty road close to 2,000 years ago was very different than that of mine as the parent of a child with special needs. However, the people He provided along the way for Paul and for our small family were remarkably similar.

To read the rest of God Uses Whatever It Takes to Grow Our Reliance on Him visit the Key Ministry blog.

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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Who Do You Say Jesus Is?

Who Do You Say Jesus Is?

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 Youre 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 dont 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 whats 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, Id say He was:

  • A Safe Harbor and Comforter: As I struggled with fear and confusion over my sons 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 sons 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.

Author Jolene Philo

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Is That Everything That’s Going to Happen?

Is That Everything That’s Going to Happen?

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 websiteSharing 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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