Suffering Is Not What I Wanted for My Child

Suffering Is Not What I Wanted for My Child

by | Oct 3, 2018 | Different Dream, Grief, Spiritual Support

Suffering Is Not What I Wanted for My Child

“Suffering is not what I wanted for my child,” says guest blogger Angela Parsley, who has been dealing with pain since she was young. Yet, her daughter is dealing with similar pain issues with no relief is in sight. Angela shares how she stays strong as she and her daughter suffer together.

From an early age I suffered from migraine headaches and neurological issues. The headaches and other issues became worse over time, and suffering is not what I wanted for my child. Though it’s been a long journey over a few decades, I’ve been strengthened by these trials. Of course there were ups and downs in the process but mainly I trusted God’s plan.

Fast forward to my daughter. Her head is aching and after many attempts at medication, relaxation, doctor’s visits and tests the pain won’t relent. Being on the caregiver side of pain has shaken me to the core.

When I experienced pain in my own body, I learned endurance. But watching someone suffer similarly is hard to endure. I find myself wrestling with God. I don’t want my daughter to experience pain. She’s so young and I fear for her future. I want to be able to take the pain away, but it is beyond my power. It has dismantled me.

God reminds me of the Bible story of Jacob wrestling with God, something He used it to change Jacob into a new person. Jacob refused to let go of the wrestling until God blessed him. The blessing came with a life changing limp. Yet it also came with a new name and a new deeper faith.

That’s what trials do. When we get past the stage of being undone, they are opportunities to stretch our faith and trust in the only One who can truly help in our time of need.

I didn’t have the strength to endure this trial apart from God. He was the strength of my heart when I turned to Him in my pain. He helps me to see and persevere. The role of caregiver is an area where I need to grow, to grieve this new normal, and then to depend on Him to get us through it whatever the outcome.

Suffering is not what I wanted for my child. But God has His plans for my daughter. I know they are for our greater good. I know by faith in His good work on our behalf and for His glory will turn out the way He means it to be.

In suffering I can relate more deeply to the Father who did not spare His Son because of His love for us. What greater love is there? He is a good Father in good and bad, He will never leave us or forsake us. We may not understand why certain trials happen but we can trust God is with us in them. They are producing faith that is more precious than gold. While living His truth, we can endure all things as we keep our eyes fixed on Him.

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Angela Parsley is a certified biblical counselor. She lives in Chattanooga, Tennessee with her husband Tony and their three children. She writes and reviews books at her blog, Refresh My Soul. You can follow her on Twitter.

Author Jolene Philo

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Caregiving Is Hard Work

Caregiving Is Hard Work

by | Sep 24, 2018 | Different Dream, Encouragement, Spiritual Support

Caregiving Is Hard Work

My formerly feisty, stubborn, and determined mother turned 90 during Labor Day weekend of 2018. The weekend was also the 10th anniversary of when we realized Mom was having memory problems. When she decided to move in with my brother and his family. When I took over her finances. When my sister from out of town began monthly treks to visit her. The weekend was also the tenth anniversary of when we learned caregiving is hard work.

The 10 years between 2008 and 2018 were not kind to Mom. Her world began shrinking. Her keen intelligence slowly failed. She moved into a memory care unit in 2015. She no longer cares about her appearance. She’s demanding and increasingly snippy and grumpy with the staff and with her 3 children. She pouts if she doesn’t win every game of cards. She whines. A lot. Caregiving is hard and getting harder.

Even so, my brother and I schedule visits so she has company most week days. We bring her to our homes for meals on alternate weekends. My brother takes her to church most Sundays. I spend several hours a month dealing with her finances. My sister makes monthly visits, does Mom’s clothes shopping, and organized the 90th birthday party.

To read the rest of Caregiving Is Hard Work, visit the Special Needs Parenting blog at Key Ministry’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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When Autism Gives Courage to Stand

When Autism Gives Courage to Stand

by | Aug 29, 2018 | Different Dream, Encouragement, Spiritual Support

When Autism Gives Courage to Stand

Guest blogger Amy Felix says that when autism gives courage to stand, something beautiful happens. You may well agree after reading this post, which comes with a tissue warning.

When Autism Gives Courage to Stand

Growing up, my faith was weak. God used it, what little there was, but I always wished I could be more bold. Even now, I struggle with speaking up or standing out when I need to. My heart is on fire for Jesus, but putting myself out there is still hard; mostly because I feel unworthy and I worry about others’ opinions of me.

But, through God’s grace, my daughter is changing all of that.

I’ve learned, through having a sibling with severe epilepsy and parenting children with autism, that many look down on those with special needs. Some expect them to fail or see them as less than. Others pity them or try to justify treating them differently. I admit I used to do the same things when I was young, before the special needs community became such a huge part of my world. Before I understood a powerful truth.

A truth that my daughter has taught me and many others, just by being who she is.

In church towards the beginning of worship, when most people wait to be told to stand, I used to wait right along with them. Inside, I wanted to stand up and raise my hands and throw myself into worship with abandon. Outside, I was scared to be different. I didn’t want to stand out. It was a time for worshipping the very God who holds my heart, and I hesitated. All because I was focused on the opinions of those around me.

Not on my love for the One I was there to praise.

My daughter has always had a passion for worship. Her whole being is wrapped up in it. It’s her primary way to connect with a God who created her uniquely and perfectly. She worships without a care in the world. It doesn’t matter who’s watching or what others may think. The world around her seems to disappear; one of the many gifts given to her through autism. She’s intensely invested; all else melts away. The moment the music starts, regardless of what anyone else in church is doing, she is the first to stand. She is the first to raise her hands in worship. She stands and praises Him, even if no one else joins her.

In her love for worshipping her Savior, she is courageous.

She’s given me the courage to stand as well. She’s inspired me to push past hesitation and lose sight of the world and seek His face. To see nothing but His glory. To feel nothing but love for my Father, who has been so kind to me. The One who gave me a child who leads. A child who is different. A child who doesn’t need pity. A child who rises above. A child fashioned after the One who made her.

Not all of autism is beautiful and poetic.

It’s hard and it’s painful. But I am convinced God is working in and through it. There are incredible gifts woven throughout. One gift is inspiration to take a stand, both inside the walls of the church, and outside in my daily life. To fight the good fight. To be courageous.

To be more than I ever thought I could be.

 

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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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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Measuring Milestones in Micros

Measuring Milestones in Micros

by | Aug 22, 2018 | Different Dream, Encouragement, Spiritual Support

Measuring Milestones in Micros

Measuring milestones in micros sounds strange to parents of typical children. But guest blogger Kimberly Drew believes doing so is a crucial way for parents of children with special needs and disabilities to remain emotionally healthy. Measuring milestones in micros is crucial for parents’ spiritual growth, too.

Recently, our daughter Ellie had a playdate with a friend who is a month or two younger than she is. I was reminded of how hard it is to look at children who are on target developmentally in comparison to a child with special needs. It’s hard to stare at the milestones in front of you and not to feel discouraged. Ellie is going on 3 and still doesn’t sit up or stand. I have learned from raising Abbey, our older daughter with special needs, is that an age peer group is not the best standard to measure against. Once we accept where our children are, we can learn to measure them best against themselves.

For example, Abbey has a Bitty Baby she loves to play with. The doll is wearing the outfit that Ellie wore in the NICU. While Ellie is still unbelievably tiny (she wears 18 month clothes and a size 3 diaper), she is huge compared to the size she was when she came home. Also, when we adopted Ellie she came home from the NICU with a feeding tube.  She still can’t eat regular food, but this morning she ate an entire carton of yogurt, which is a pretty big deal.

The reality is that our children’s successes and triumphs over their physical and cognitive limitations are best measured in micro-milestones. After many years, the micros really add up. Abbey started using the toilet at school last year, something we tried many times. She’s 16 now, and it finally clicked.  While she is not reached 100% on the toilet, she goes several times a day successfully. Each time I want to cheer.

Our faith can be measured in micros as well. We can look back to when something big happened and we made huge growth in our spiritual lives. But in truth, real change happens in our daily walk with the Lord. Moment by moment, challenge by challenge, prayer by prayer we begin to slowly change. Sometimes, it takes 16 years for things to finally click. Without the micros, we would never reach milestones. I have always appreciated Galatians 6:9.

Let us not become weary in doing good,
for at the proper time we will reap a harvest if we do not give up. 

As I type, Ellie’s in occupational therapy. I’m watching her work hard to pull little building blocks apart and hand them to the therapist. After several times she gets it and tries to say, “I got it!”

It’s a small building block, but put together they can build quite a structure. A lifetime of daily pursuing Christ and seeking his heart leads to a life defined by character and faithfulness.

Measuring in micros matters, so don’t give up!

 

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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.

Author Jolene Philo

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When We Fill Our Minds with Beautiful Things

When We Fill Our Minds with Beautiful Things

by | Aug 15, 2018 | Different Dream, Encouragement, Spiritual Support

When We Fill Our Minds with Beautiful Things

What happens when we fill our minds with beautiful things? Guest blogger Sharon Cargin writes about the relationships her grandchildren have forged with their uncle who lives with cerebral palsy. They are beautiful things indeed.

When We Fill Our Minds with Beautiful Things

After almost 30 years of caring for my son Tim who has cerebral palsy, it is still a battle to keep my mind on the beautiful things in his life. Tim is number 3 of 4 children. He now lives 30 miles away in a beautiful residential facility for adults with special needs. His caregivers do the very intense total care he requires. They also give him a life full of activities and friends. I didn’t see that coming in the thick of his care when he was young.

I didn’t think his life could ever be beautiful.

My husband and I bring Tim home on Sundays to join our 2 older sons, their wives, and their children for church. I never expected the beauty of the deep bond he has with his nieces and nephews. The 6 children who call him Uncle Tim range in age from 1 to 8. Each child is around 2 before they are not afraid of him and his oversized, custom-fitted wheelchair with the oxygen concentrator. To add to their discomfort and confusion, Tim’s speech is hard to understand. It takes great patience to wait for him to finish a sentence. The children learn to painstakingly listen and then ask him to repeat himself if necessary. Emily, the oldest, led the way in pursuing a relationship with Tim. Once she became old and brave enough, she began climbing into his lap. Today she can stand beside him for his hug and kiss, as is their ritual. Tim then grills her about what she did the previous week and what her plans are for the next one. 

Who knew such an authentic, gracious relationship would occur with these very young children?

A couple months ago Emily asked if she could give Tim his wafer and juice for communion. Carefully and diligently, she let us show her how to accomplish this not-so-easy task. Do you have a picture in your mind of this act of graciousness? 

Does it bring tears to your eyes like it does mine?

My husband and I live in a large Victorian home with 2 sets of double doors. Both doors must be open to accommodate Tim’s large wheelchair. The grandchildren have watched the process of unlocking one side of each set of doors, opening them fully, and then locking them in place with a foot lever. Several Sundays ago Emily organized the grandchildren to open the doors before Rich, Tim, and I arrived. In a masterpiece of teamwork, the children stood on chairs to reach the locks near the top of each set of doors. The children made a bothersome inconvenience, in the eyes of most adults, into a game, and they won.

What a blessing!

Scientific studies tell us negative thoughts make pathways in our brain and it takes hard work to change those pathways. A verse in the Bible tells us how to change those pathways by thinking continually on the beautiful things.

Summing it all up, friends,
I’d say you’ll do best by filling your minds and meditating
on things true, noble, reputable, authentic, compelling, gracious—
the best, not the worst;
the beautiful, not the ugly;
things to praise, not things to curse.
Phil 4:8 MSG

When my grandchildren see Tim their focus is on the best, not the worst, the beautiful not the ugly and that which is worthy of praise, not of cursing. Their minds are fixed on the beauty of Tim’s life and that sentiment is implanted in their hearts.

Do you struggle as I do to stay focused on the best, not the worst; the beautiful, not the ugly; things to praise and not to curse?

Science and the Bible tell us we will do best by filling our minds with the beautiful things.  I invite you to join me in choosing to fill your mind with the best, which can only be done with the help of a God who has the power to transforms our minds.

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.

What happens when we fill our minds with the beautiful things in the lives of our children with special needs? Sharon Cargin shares her answer in this post.

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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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The Lord Was With Joseph and the Lord Is With You

The Lord Was With Joseph and the Lord Is With You

by | Jul 23, 2018 | Different Dream, Encouragement, Spiritual Support

The Lord Was With Joseph and the Lord Is With You

The Lord was with Joseph.

The phrase caught my attention as I read Genesis 39 during my morning devotions.

That’s pretty bold, I thought. Joseph’s been sold to slave traders by his brothers, sold again to Potiphar, and the narrator of the story has the gall to say “the Lord was with Joseph.” How can that be?

One verse later, there it was again.

The Lord was with Joseph.

This time the observation came after a description of how Joseph gained his master’s favor and trust by running his house efficiently and well. That one makes more sense, I admitted while adding the caveat, but he’s still a slave.

Near the end of the chapter, the phrase popped up again.

The Lord was with Joseph.

The phrase was harder to swallow this time, coming as it did after his master’s wife falsely accused Joseph of attacking her. You’ve got to be kidding, I thought. The Lord can not be with Joseph in those circumstances.

But in the final verse of the chapter, the narrator describes Joseph being sent to prison, followed by–you guessed it–

The Lord was with him.

Not only was the Lord with Joseph in prison, but in whatever he did, the narrator went on to say, the Lord made Joseph prosper.

In my head, I did a quick recap of the plot points.

Sold into slavery.
The Lord was with Joseph.
Working hard and making his master rich.
The Lord was with Joseph.
Falsely accused.
The Lord was with Joseph.
Unjustly imprisoned.
The Lord was with Joseph.
And the Lord made him prosper.

To read the rest of this post, visit the special needs parenting blog at KeyMinistry.org.

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.

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