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.

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The Grief We Live with as Parents of Kids with Special Needs

The Grief We Live with as Parents of Kids with Special Needs

by | Feb 22, 2018 | Different Dream, Grief, Spiritual Support

The Grief We Live with as Parents of Kids with Special Needs

The grief we live with as parents of kids with special needs is real and pervasive.  This week, it showed up in two different places at two unexpected times.

Grief’s first appearance came as I sat enthralled by our granddaughter who was sleeping in my arms. She’s 2 1/2 weeks old, I thought to myself while gazing at her peaceful face and perfect, unmarked skin. She’s the same age our son was when he was released from NICU. With that, grief for his surgical scars and the pain he bore during his early weeks washed over me. I grieved for the 17 days he spent in the hospital instead of in our home as a newborn. My grief felt as fresh and real as it had been after he was born in 1982.

Soon though, the all too familiar sense of loss passed. What remained was gratitude for the child in my arms and the blessing of being part of her early days. A few days later I was grateful again when the grief we live with as parents of kids with special needs appeared in a different place and another unexpected time.

This appearance occurred while I completed one of the final parent interviews for the book I am co-authoring with Dr. Gary Chapman. Each interview ends with the same question: Is there anything else you’d like to mention? I presented that question to the mother of an almost 3-year-old, adorable red-headed boy who has cognitive and speech delays. Here’s what she said:

If necessary, go through counseling to talk about hard things. Have a safe space and a safe person who can help you see more clearly. I’ve done some mental health counseling. There is an element of grief that your life and your child aren’t what you expected. Give yourself space to grieve. Being honest about your grief lets you see what kids with disabilities really need instead of dwelling on all the broken things. So give yourself permission to grieve.

This wise, young mother and I sat in her living room. “Even thought its not something we asked for, our son may live with us the rest of our lives. It’s worth every minute,” she said and smiled at her adorable, red-headed son and said, “You’re worth every minute.”

We looked at one another, connected by the grief we live with as parents of kids with special needs, the grief that binds us together and makes us grateful for the blessings and relationships we never take for granted.

I thought of my son and the 36 years of mingled joy and grief we have known with him. Worth every minute, I offer back in silent prayer. I am so grateful for your life, my son.

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

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This Is the Hope of Christmas

This Is the Hope of Christmas

by | Dec 14, 2017 | Different Dream, Grief, Spiritual Support

This Is the Hope of Christmas

This Is the Hope of Christmas

I almost talked myself out of writing a December column this year, and for good reason. I didn’t have the heart to write about the joy of Christmas after first receiving a message that my husband’s stepmom, who had been in hospice for a week, wasn’t expected to make it through the day. Minutes later, news came that my dear friend Carol was gone barely 2 months after the breast cancer she’d conquered came back as brain cancer.

Tears replaced words as I cried for Carol’s husband and one living son. I cried at the cruel timing of my broken foot which kept me from traveling to see her and say good-bye. And I cried for a world without Carol, a gentle and strong woman who used the experience or losing her younger son to minister to others.

A thought from my morning Bible study came to mind as I wheeled to the counter for a handful of tissues. While reading John’s account of Lazarus being raised from the dead, I’d been struck by how Jesus responded to Mary’s grief. He could have revealed His divinity by immediately bringing Lazarus back to life. Instead He first revealed His humanity by entering into Mary’s grief and crying with her. Now, Jesus knew Lazarus would soon be restored, so He wasn’t crying about his absence. Jesus was crying for the pain of separation borne by Mary, Martha and all those who loved Lazarus.

Jesus was the Word become flesh in that moment, fully human and dwelling among those He loved. By joining in Mary’s grief, Jesus sanctified her tears and showed a broken world how to grieve well and without sin. Then a few minutes later, He revealed the glory of His divinity as the only Son from the Father by bringing Lazarus back to life.

Though God once again graciously revealed His beauty through His word, my heart is still hurting. But it is also rejoicing as Christmas approaches. Not with glitter-and-tinsel giddiness. But with born-in-a-manger gratitude for the God of all glory who took on flesh and came to earth as a helpless babe. First and foremost to save us, but also to be human with us. To cry with us. To grieve with us.

To show us that the power of the resurrection resides in Him and is freely given to all who believe. This is light in the darkness to a weary and broken world. This is the hope of Christmas.

And the Word became flesh and dwelt among us,
and we have seen His glory,
glory as of the only Son from the Father,
full of grace and truth.
John 1:14

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

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5 Things Special Needs Parents Want from Friends

5 Things Special Needs Parents Want from Friends

by | Feb 22, 2017 | Different Dream, Grief, Spiritual Support

5 Things Special Needs Parents Want from Friends

Special needs parents want so many things for their children with disabilities. They’re so busy meeting their kids needs, they fail to pay attention to their own. Today, guest blogger Kimberly Drew writes about 5 things special needs parents want from their friends. See if they resonate with you.

5 Things Special Needs Parents Want from Friends

Last night I went to a meeting for a disability ministry our church will be launching soon. The meeting itself was productive, but it was the friendship around the table that really spoke to my heart.

You see, I received a large packet in the mail from the high school my daughter will be attending. It suggested that my daughter sign up for English, math, science, and social studies classes next year. Another insert provided check off options for cheer leading or other spring sports.

For many parents with children with special needs, milestone moments for their peer groups can be difficult. When I read the packet,  I started to cry and threw it on the table. At first I was frustrated that we even received it. But the mass mailing was not meant to be an insult–it was just a mailing. A school district that serves hundreds of students might not realize how sad it is for parents to send their disabled children to a multiply disabled classroom.

There are very few people who understand how isolating and disappointing these moments are. The women sitting around the table at the church meeting let me cry. I didn’t have to fill in any blanks for them to understand what I was feeling. There was a strong sense of community for me that was very healing.

The experience made me think about my own circle of friends, family, and church family, my local school family and why it’s so difficult to talk about these things and process them with people close to me. Here are a few reasons that I came up with about what special needs parents want from their friends and family. It’s not an exhaustive list, but I hope it will show your own circle of influence how to love and support to you.

  1. I don’t want you to think that I’m having a pity party. I don’t like to complain about the challenges of raising our daughter because I don’t want to be a Debbie Downer or a negative person. Everyone has things that they struggle with emotionally, and this just happens to be our thing. Sometimes, I hesitate to share this with you because I don’t want you to think that I am just feeling sorry for myself.
  2. I don’t want you to pity me either. If I put my feelings into words, it sounds so very sad. I don’t want you to feel sorry for me. What I really want is for you to hear me, hug me, and love me through it.
  3. I don’t want a pep-talk. Sometimes I just need to get the feelings out to get it over with. I don’t need a commentary about looking for the bright side or a pep-talk about what we have going for us. Our circumstances stink! We can’t change them, and I can’t change that it hurts me. No one gets through grief with a pep-talk, so let the situation be what it is. Let it take its course. If I stop brushing my teeth and getting out of bed, then you can give me a pep-talk. Otherwise, just be there for me.
  4. I’m afraid you’ll back away. I’ve talked to hundreds of parents of kids with special needs. They all say that that when things get hard, some people back away. They can’t take the drama of your life. They stop calling, stop messaging, stop asking. I wish I could change what we are going through so when those people ask how things are going, I don’t have to give medical run-downs or list of upcoming appointments. I can’t change the fact that my life revolves around my child’s disabilities. This is my life…but sometimes I shield it from you because I don’t want to have one more friend who packs up and heads out.
  5. It’s just easier not to talk about it. Sometimes my coping mechanism is avoidance. So it means a lot when a friend initiates the conversation. We need friends who are proactive about asking how we are dealing with things. I appreciate friends who anticipate situations that might be hard for me and ask about them. I cry, and they listen. It’s so therapeutic. It won’t dominate our friendship, but it’s a part of who I am. Love me enough to not let me ignore the pain.
What Else Do Special Needs Parents Want from Friends?

Did Kimberly’s list include what you want? If not, add to the list of what special needs parents want from friends by leaving a comment in the comment box.

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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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Take a Breath for a Grieving Parent

Take a Breath for a Grieving Parent

by | Aug 31, 2016 | Different Dream, Grief, Spiritual Support

Take a Breath for a Grieving Parent

Guest blogger Scott Newport is visiting Different Dream today with the poem Take a Breath, which he wrote for a grieving father. Grab a tissue now. You’ll need it.

On a Sunday afternoon I met with Pierre, for the second time, at the children’s hospital. “My first son died after one day of life,” he said. When we met, his other son was hanging on at the age of two. In our time together he spoke about his love for sailing on Lake Huron. After I left he wrote me this text.

Thanks for the visit.
I feel like everything is going to work out for some reason.
Take a deep breath of fresh air for me today!

In the early hours of the next morning, after I finished my run and the sun was about to rise, in the tiny moment, just before I was to take a breath, I decided to write from his perspective. I sat at my computer and I took that breath.

Take a Breath for Me

If only I could sail again
over the deep blue depths of
Lake Huron–Just off my hometown of Tawas–
I would, my main sail and jib perfectly trimmed.

I would listen to the soothing breath of the off shore breeze
flapping the canvas sails
like a family of geese taking off for the first time
migrating to a new land.

I would watch the midnight sky rotate
while lying on my back.
I would remember the lightning bugs
wisping by my childhood dreams like tiny, slow-bending, shooting stars.

With Au Sable Point jutting out on the horizon
and waves gently kissing against her bow, I would feel like home was close.
The familiar landmark off the leeward shaped like a coaxing curled finger
when we passed her on the thirty-footer racing from Port Huron to Mackinaw.

Today though, I sail on a different sort of blue–
from the often lonely hospital helm, I set my course for true north
not knowing where I’ll land
or when the next storm will be announced on the ship to shore radio.

My wooden rudder a bit loose, I grip onto each day knowing
if it does rain, the scent of the oils before a downpour will be denied passage,
the feel of the drops when they bounce off the quarter deck
will now pitter patter silently off the limestone windowsill in our I.C.U. room.

With my dead reckoning a bit off, I will inhale
the breath of my wife and ill child.
I pray that as their faint, warm air billows my sail
it will harness the energy I need to creep along to my next port, my next mooring
where maybe, just maybe, I can take a deep breath of fresh air again.

Author’s Note: Pierre’s son, Christian, did die. Pierre asked me to speak at the funeral, and I read this poem. I would love to hear your thoughts or a favorite line from the poem Take a Breath. You can leave your comment in the box below.

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Scott Newport is a carpenter who has a vision for unwanted, damaged wood. His finds are treasures to his soul. Each discovery he makes unfolds into a beautiful piece of furniture for which he finds a home, usually with a child or caregiver of a child with special needs. He writes about the life lessons he learns from his 3 children, especially from Evan who died in November of 2009 after 7 years of joyful life. To access all of Scott’s guest posts, click on the magnifying glass at the top of the page and type “Scott Newport” in the search box.

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Will We Cling to God?

Will We Cling to God?

by | May 23, 2016 | Different Dream, Grief, Spiritual Support

Will We Cling to God?

It’s here again.

The anniversary of the day my world turned upside down.
The birthday of our firstborn.
The day my heart swelled with a fierce, intense, permanent love.
The day my heart broke.
The day the doctor said, “There’s something wrong with your baby.”

That day is here again.

The anniversary of the decision my husband and I made 34 years ago. Would we cling to God when our newborn was life-flighted 750 miles away for surgery? Would we reach out to Him in our sorrow and pain? Or would we let go? By the grace of God, we chose to hang on. By the grace of God, our son lived. He still lives.

For that I am truly grateful.

God has taught me so much about clinging Him in the 34 years since the day our beautiful baby was born. Above all, He’s shown me this.

We face this choice as parents every single day of our children’s lives.

When we learn the surgery didn’t fix everything and more surgery is needed. When we ride in the ambulance beside our children and wonder if we’ll get there in time. When we watch the gurney holding our children disappear down a long hallway.

Will we cling to God?

When our children don’t progress as they should. When diagnosis follows diagnosis. When the treatments don’t work. When our children cry out in pain. When they stop eating.

Visit the Not Alone website at specialneedsparenting.net to read the rest of this post.

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 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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