All Hail the Birth of Jesus!

All Hail the Birth of Jesus!

All Hail the Birth of Jesus!

All hail the birth of Jesus!

The import of one word in that command electrified me as I worshipped with my home congregation during this Advent season. We were singing the new-to-me song, Arrival, and the lyrics grabbed my attention and my heart.

The word that zapped me was not baby, though the reality of Jesus coming to earth as an infant over 2000 years ago is shocking.
The word was not divine, though the concept of the Son of God living on earth in perfect relationship with His Father is equally shocking.
The word that sent a surge of energy and wonder through me was all.

All. As in everyone.
All included.
All present.
All expected.
All welcome.
All worshipping.

All. As in all hail the birth of Jesus. All–young and old, male and female, rich and poor, walking and wheeling, speaking and silent, hearing and deaf, sighted and blind, ill and well–gathered together to celebrate and proclaim the birth of our king.

Over and over, the lyrics of Arrival repeated the call that all hail the birth of Jesus. The words reminded me of Paul’s vision in Philippians 2:10–11 of how we all will one day respond to the name of Jesus: every knee should bowand every tongue confess that Jesus Christ is Lord.

My heart rejoiced as I pictured the great throngs of believers singing together once every barrier to inclusive worship is broken. But my joy was tempered when I thought of how far churches still have to go before they can share the good news with those who live with disabilities in their own communities, much less around the world.

To read the rest of this post, visit the Joni and Friends blog.

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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Autism Brought Me to the End of Myself

Autism Brought Me to the End of Myself

Autism Brought Me to the End of Myself

Autism brought me to the end of myself. That’s what guest blogger Amy Felix says about her daughter’s condition. My son’s condition brought me to the end of myself, too, and your child’s condition has probably brought you to the same place. Today Amy tells of finding grace at the end of herself through a small connection with her little girl. Tissue warning!

Autism brought me to the end of myself. It had been years. Years of longing to hold her, to breathe her in. I missed her. I would think back to the day I met her. She slept in my arms as I snuggled her close. Then, quickly, it came to an end. The distance between us became so vast––all of me ached to be near her again. I watched, on the outside looking in, as autism swept my little girl away to another world.

She wouldn’t let me hold her anymore.

It became our new normal. I could help her get dressed and tie her shoes before preschool, but there were no goodbye kisses. I watched as the other kids ran excitedly into their mother’s arms at the end of the day, while I carefully led my daughter to the car by the strap of her backpack. I couldn’t get too close. She didn’t want to be touched, even when she was sad. I couldn’t comfort her. My heart was breaking as I felt a loss over a child who was still with me. I’d look back at those first months of her life; all those moments I held her, not knowing––taking for granted the sweet way she’d lay on my chest in the early hours of the morning.

The pain was overwhelming.

Autism brought me to the end of myself. I’d watch her there, alone in her playroom, as she’d recite her Little Quack books over and over again from memory. Her soft blonde curls covering most of her face, (She didn’t like her hair brushed, much less pulled back.) she would gladly stay alone there for hours if I’d let her.

In her own little world, she remained––and I felt trapped in mine.

We were just beginning; just entering the world of intense therapies and IEPs. I didn’t even know what to hope for. All I knew was to fight. To fight for all that my baby needed, all that she deserved. To fight to know her more and to let her know that she was longed for; that she was seen, loved, and carried in my heart whether she be in the middle of a period of progress or in the middle of another epic meltdown.

I longed for her to let me into her world; to feel her love and to know she felt mine.

Fast forward seven years, to the week before Christmas. We stood in the front row at church. Our family had been asked up on stage to light the advent candle. She was nervous. Her usual swaying and singing to the worship songs replaced by that disregulated look I knew all too well. I was envisioning us having to step out, as she struggled to find a way to calm herself. No matter how I’d tried over the years, I couldn’t get her to connect my presence with comfort. She was trapped in her overwhelming anxiety but wasn’t able to reach out in any way and accept the care I offered. Autism created a chasm between us, even as we were only inches apart. This distance, one of the most painful experiences of my life.

Until that night.

I could feel her stress level rising. My heart sent up the same prayer it had thousands of times before––a silent plea for a deeper connection to my child. This time, the answer was a big, beautiful, life-changing Yes!

My daughter looked up at me and said, “I’m feeling pretty nervous. Can I hold your hand?” 

There it was.

One moment. One sentence. One breath of new life into my weary heart. She came to me. She was scared and, instead of the usual withdrawal into fear-filled isolation, she reached out for my hand. My baby girl was letting me comfort her, the way I’d longed to for so many years. I finally entered her world on a deeper level- one most moms reach with their children the very first time they hold them in their arms. The waiting, the hoping and the dreaming was over…I had just been given the greatest Christmas gift anyone could ever ask for.

God’s love moved mountains.

I stood there, her hand in mine, through two more Christmas songs with a smile on my face and tears in my eyes. No one around me could’ve possibly known that my entire world was shifting and changing. Autism brought me to the end of myself. But here I was, experiencing a glimpse of Heaven; of restoration and life-giving joy…and I’ll never forget it. This journey, once again, teaching me that the little things are the biggest of them all.

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My name is Amy Felix. I’ve been married for 10 years to a guy who’s totally out of my league. I’m a homeschooling mom to 4 kids, ranging in age from 9 to 2 years. That’s really enough work on it’s own but, because I love it, I’m a photographer as well. And, in my spare time, I write. My faith is the driving force behind my special needs blog: Appointed To Hope. I’m a firm believer in being real, transparent, and using the gifts of this journey as a way to relate to others in their joy as well as their sorrow. To read more about my adventures in special needs parenting, visit my website at www.appointedtohope.com.

Author Jolene Philo

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When Being Thankful Is Hard As a Special Needs Parent

When Being Thankful Is Hard As a Special Needs Parent

When Being Thankful Is Hard As a Special Needs Parent

When being thankful is hard as a special needs parent––and let’s not beat around the bush, watching our children struggle doesn’t lend itself to loud hosannas––how do we approach Thanksgiving? How do we cultivate gratitude without sugar coating the challenges in our kids’ lives? How can we be grateful when a child’s condition is going from bad to worse, and we can find nothing to be grateful for?

I stared down those questions more than once when our baby boy struggled to stay alive.

The first time was during my first Thanksgiving as a parent. By then our six-month-old had endured 2 major surgeries, a three week NICU stay, a week long PICU stay, two dozen early morning GI procedures, and an overnight hospital stay on Halloween weekend. I was sleep-deprived, grieving, and my breasts were sore after months of pumping milk for our tube-fed baby who could tolerate nothing but breast milk. The thought of being thankful for my child’s precarious state of health and the pain our baby had endured was unimaginable. Cruel.

I couldn’t do it.

The week after my thankless Thanksgiving, I did what proud, new parents everywhere do. I composed a Christmas letter, complete with pictures of our baby boy in his elf costume, to mail to the many friends and family members who had faithfully prayed for us since our son’s birth.

To read the rest of this post visit the blog at Hope Anew’s website.

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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God Surprises

God Surprises

God Surprises

God surprises are on guest blogger Sharon Cargin’s mind this Christmas season. In today’s post she reflects on the God surprises she experienced after the birth of her son, many of which are similar to what Mary experienced.

God Surprises

Silent Night was meant to be sung with an organ like all good hymns in the 1800’s. The Christmas Eve it was to debut, the organ refused to work. My favorite explanation is the church mice ate through the billows. The only option available was to quickly adapt the song to be sung with a guitar. What a surprise for the composers who envisioned an organ but had to settle for a guitar. One of the God surprises that led to a much more beautiful, magical song.

The lyrics of Silent Night tell about a series of God surprises. Who plans the birth of the long-awaited Savior King of the world to a virgin? Who planned for the young, pregnant girl to travel 70 miles when she is about to give birth? Who planned for the baby to be born in a stable with a manager as a cradle? Who announced this marvelous, long-awaited king by angels to smelly, lowly shepherds? A crazy plan, yet it is the perfect plan as we look back on it–a perfect God surprise.

We also had a son born at an unplanned time and place.

My body went into labor 3 months early.
Our third son was not born in our hometown surrounded by family but rather 120 miles away in a bigger hospital.
My travel plan morphed into being transported by a life flight helicopter.
My beautiful, awaited son spent 3 months in a scary plastic box covered with tubes and wires.
We had to wait almost 2 months before we could even hold him.
This baby spent 3 months in a room filled with bizarre noises, bright lights and daily heel pricks to take blood.

The adaptation of Silent Night and our Savior’s birth story were God surprises that became beautiful perfect plans. It was hard to find the beauty in the plan of our son’s birth as over time. He couldn’t do the things a normal baby could, and he was given a diagnosis of quadriplegic cerebral palsy. His life required complete care to do daily tasks and a custom, fitted wheelchair. We have struggled to keep him alive for the last 30 years, and it has been hard to embrace his life as a perfect God surprise. I think that is where faith comes in, where we have to surrender our expectations to a loving, all-wise God. He promises that every detail of the lives of those who love Him will be worked into something good.

Could it be that God can use all of our circumstances that seem so surprising to us maybe even gut-wrenchingly, difficult into His perfect plan?
Are there God surprises for each one of us?
I can tell you with full confidence that my son’s life, even though he is disabled has been and will continue to be used for good.
He brings love and laughter to all he comes in contact with.
Because he has had a life of pain and suffering our son has an innate ability to connect with others who are hurting.

Have you ever had a plan that went so far off schedule you were devastated, confused and wondering what could be worse? Maybe it is time to believe that God does have a perfect plan filled with God surprises for you. Just like in the adaptation of Silent Night, the birth of God’s precious Son, and my own son’s birth and life. Take heart, God is with us!

“Meanwhile, the moment we get tired in the waiting, God’s Spirit is right alongside helping us along.
If we don’t know how or what to pray, it doesn’t matter.
He does our praying in and for us, making prayer out of our wordless sighs, our aching groans.
He knows us far better than we know ourselves, knows our pregnant condition, and keeps us present before God.
That’s why we can be so sure that every detail in our lives of love for God is worked into something good.”
Romans 8:26-28 (Message Bible)

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Sharon (wearing white shirt above) is a wife, mother, mother-in-law, and grandmother. She has taught elementary school and homeschooled. Teaching and mentoring children and teens has been a joy in her life. Life was fairly normal for Sharon but pretty much blew up at the birth of her third son who was born 3 ½ months premature with quadriplegic cerebral palsy. Sharon has a passion to encourage others and share some of the lessons she has learned over the years.

Author Jolene Philo

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A Reluctant Caregiver

A Reluctant Caregiver

A Reluctant Caregiver

I’ve been a reluctant caregiver most of my life, but didn’t realize it was a problem until after the birth of our first child. He was medically fragile for the first four years of his life, but his special needs weren’t the cause of my reluctance. In truth, I rose to the challenge whenever a health crisis arose. But after his recovery from each surgery or hospital stay, when life returned to the norm of putting our baby’s daily needs above my desire for creative and intellectual pursuits, I became a reluctant caregiver.

I discovered I wasn’t a baby person.
Or a toddler person.
Not even a preschool person.

I loved our son and then our daughter fiercely from the day each one was born. But, I didn’t lay down the mantle of a reluctant caregiver until our children reached age 5 or so. Only then did caregiving cease to consist of marking time until they went down for naps or to bed for the night. Only then did our hours together become a fascinating time of introducing them to God’s fascinating creation.

I was ashamed of my reluctance.
I kept the secret buried deep.
I convinced myself that I’d outgrown it.
I almost forgot about it.

To read the rest of this post, 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 quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

Author Jolene Philo

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