Why Did this Happen to My Child?

Why Did this Happen to My Child?

by | Sep 20, 2023 | Different Dream, Encouragement, Grief, Special Needs Parenting, Spiritual Support

Why Did this Happen to My Child?

“Why did this happen to my child?” is one of the first questions that comes to mind when hard things happen to our kids. Guest blogger Kelly Simpson explains what she has learned from posing that question as the parent of a child with a serious medical condition.

Cancer, a prognosis, a different doctor, a tragic accident, another surgery, a job loss, another round of chemo, another week spent at a specialized clinic, lost hope, feeling as though you will never see the end of this terrible season you are in right now, longing for a “normal life” or “normal child.” These are all are “no good” things.  In fact, I’m sure no one would ever freely choose hardship.

But there is hope, peace, and joy in all circumstances. God withholds no good thing from His people. We ask why did I or my child, friend, or family member receive this diagnosis? Why did this happen to my child, to me, to other people I love? All are good questions, and the Lord does not shoo us from seeking His heart and ways.

1 Peter 5:7 says, “Cast all your anxieties on him, because he cares for you.” I like the word “cast.” It makes me feel free to ask God about all the things I have on my mind or weigh heavy on my heart, give him my concerns, and honestly ask Him all my why questions.

He wants me to come to the foot of the cross and lay down my burdens. I also can’t help but think that He wants me to realize His ways are not my ways. “For my thoughts are not your thoughts, neither are your ways my ways.” Isaiah 55:8-9

What I think is good and what the Lord thinks is good can be very different things. When He gives, it is good. This “thing” may not be what I want or think I need, but that does not stop it from being or becoming something good from God.

It may not be what I want, BUT it can still be good. It can be good, even when things do not go my way.

I need to cling to Psalm 84:11 which says, “The Lord is our protector… He withholds no good thing from those who do what is right.”

When I have a relationship with the Lord and live for Him, it doesn’t matter what will come my way. I can expect His goodness because He will not withhold it from me!

He has planned for good to come from my season and circumstances.

    • Goodness will come from my child’s health condition. My peace and my child’s is found with God.
    • Goodness will come from my singleness—I am ministering and serving with my spare time.
    • Goodness will come from my anxiety—I have learned to hand all my worries over to Him.
    • Goodness will come from a job loss—The Lord will provide a way to make ends meet.
    • Goodness will come from not being chosen—The Lord has a divine plan for my life.
    • Goodness will come from the many doctor visits—Jesus is my ultimate healer.

These are the truths I remember when I ask God, “Why did this happen to my child, to me, or to those I dearly love?”

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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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Fighting Weariness at the Start of the School Year

Fighting Weariness at the Start of the School Year

by | Sep 13, 2023 | Different Dream, Encouragement, School/Education, Special Needs Parenting, Spiritual Support

Fighting Weariness at the Start of the School Year

Fighting weariness as a new special needs homeschool year begins makes the whole endeavor feel impossible. That sensation is dragging down guest blogger Lisa Pelissier as she helps her daughters deal with unexpected mental health challenges. Read on to discover how she’s finding the strength to keep going.

I have not been looking forward to homeschooling this year because last year was hard. I was working a lot. My girls were sick with depression, fatigue, stomachaches, anxiety, and whatever else they had. I had homeschooled four kids simultaneously for years. Now, two have graduated—the one with autism and the one with dyslexia and PANS. The hard part was supposed to be over. These were supposed to be the easy years.

But they aren’t.

As soon as my son with dyslexia and PANS graduated, the girls got sick with mental health conditions and fatigue—probably long covid, but there’s no way to prove it. Instead of looking forward to teaching, it feels like I’m going to war.

I know I’m not alone.

Other parents are facing the same sorts of battles and fighting weariness as a new special needs homeschool year begins. How do you teach complicated subjects to students who have difficulty focusing? How do you get your child excited about ancient history when their stomach hurts and they’re too tired to get up? How do you infuse them with your own enthusiasm when you… don’t have any?

Here’s my plan to get me through this tough season:

1) Remember the goal. The goal is not “finish algebra” or “make sure they know all the state capitals.” The goal is to raise adults who love God, love others, act with integrity, and work hard. If all we accomplish this year is facing adversity in a steadfast manner, trusting God to provide and protect, then they’ll have learned a more valuable lesson than they would if they just memorized the periodic table.

2) Enjoy them. Even when illness or disability seems to loom large, it’s never bigger than who my daughters are. They are delightful people. I can love them and love being with them, even when trying to make school stick in their brains is too much.

3) Tick off the right boxes. I don’t remember much of what I learned in high school. I don’t think most people do. The things my daughters will remember are the friendships they make, the special times when something touches their hearts and changes their outlook, and the lessons God imparts to them over the years.

4) Remain hopeful. My son who suffered from PANS was very sick for over four years. Today, he is healthy and is doing wonderfully well. My son with autism has struggled with the transition to adulthood, but he’s a good man and a hard worker. He will get there. And so will the girls. God is good, and His plans will be accomplished—even if they don’t look like the future we dreamed of having.

Isaiah 40:28-31 says this:

Have you not known? Have you not heard?
The Lord is the everlasting God,
the Creator of the ends of the earth.
He does not faint or grow weary;
his understanding is unsearchable.
He gives power to the faint,
and to him who has no might he increases strength.
Even youths shall faint and be weary,
and young men shall fall exhausted;
but they who wait for the Lord shall renew their strength;
they shall mount up with wings like eagles;
they shall run and not be weary;
they shall walk and not faint. (ESV)

I am weary. I am exhausted. But God is not. He is my strength.

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Lisa Pelissier

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Lisa Pelissier lives in Oregon where she is a homeschool mom and author of four middle-grade fiction novels as well as a YA fantasy novel. Lisa owns SneakerBlossom Books, offering Christian, classical homeschool Study Guides and curriculum. She blogs at Eleventh Willow, offering encouragement for Christians parenting the mentally ill. She also works as a freelance copy editor, an artist, and a marketing editor. In her spare time Lisa enjoys playing the piano and fretting about things over which she has no control. 

Author Jolene Philo

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Hello! Means the World to Those with Disabilities and Special Needs

Hello! Means the World to Those with Disabilities and Special Needs

by | Sep 6, 2023 | Advocacy, Different Dream, Special Needs Ministry, Special Needs Parenting, Spiritual Support

Hello! Means the World to Those with Disabilities and Special Needs

Hello means the world to those with disabilities and special needs. In this post, guest blogger Mark Arnold describes what a greeting reveals about the person who’s saying hello.

You can tell a lot about a place and its people from the way they greet a child or young person with a disability or special needs. I’ve visited lots of children’s and youth groups over the years, and one thing I’ve always looked for is the response of the leaders when a child or young person with additional needs arrives. Their reactions typically fall into one of two categories:

Angry face

1. Something between dejection and horror: Leaders see the person arrive and look at each other, their expressions communicating disappointment. They tend not to approach or welcome the child, ignoring them instead. There may be audible comments that reinforce their sense of regret.

 

Smiling faces

2. Something between encouragement and delight: Leaders see the person arrive, smile and head towards them to greet them They refer to them by name, ask how they are, and say they’re pleased to see them. They guide the child to join in an activity, or to a designated leader who can support them.

The child usually understands which response they receive, and that determines how they will respond to the leaders for the rest of the session.

There are many reasons why leaders fall into one of the two categories. Let’s look at some of them.

Negative responses often come from a lack of understanding, little or no training, a lack of volunteers, and inflexibility to change. Changing these responses is the responsibility of church leaders and the church community as a whole. If the most vulnerable and marginalized in our society are unwelcome, then the church has deeper issues to grapple with. Frazzled children’s or youth workers might be the ones who look bad, but behind them are church leaders who won’t adequately invest in children’s and youth ministries.

Positive response often comes from well supported and equipped team members who have been trained and have enough staff and volunteers to provide the level of support needed by a child with additional needs. Behind these teams there is usually a supportive church leader or leadership team that value children and youth ministry. They invest in finances, people, and prayer. They broadcast the message that everyone belongs there, which the gospels show is what Jesus had in mind.

In this short video clip, Philippa, who was born blind, shares some of her experiences in church and the power of saying hello. https://www.youtube.com/watch?v=gJcUpczxCp0

Which of the two responses resonates most closely with the reality of your church? If it is the negative one, work to bring about positive change so that every child and young person is welcomed and fully included. If it is the positive one, think about how you can reach out to struggling churches to help them.

Welcome heart

As Will Rogers once said, “You never get a second chance to make a first impression.”

Churches only get one shot, one opportunity to show those with disabilities and special needs how valued and loved they are. Let’s not blow our chance. Instead let’s do all we can to be the difference for children and young adults who journey with us.

A friendly hello means the world to those with disabilities and special needs, so let’s start there.

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Header image © Photo by Vladislav Klapin on Unsplash; Yellow smiley faces © Photo by Tim Mossholder on Unsplash
Angry face © Photo by Andre Hunter on Unsplash; Red heart © Photo by Nick Fewings on Unsplash

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Mark Arnold is the Additional Needs Ministry Director at Urban Saints, a leading national Christian children’s and youth organization. He is co-founder of the Additional Needs Alliance, a national and international advocate for children and young people with additional needs or disabilities. Mark is a Churches for All and Living Fully Network partner, a member of the Council for Disabled Children and the European Disability Network. He writes an additional needs column for Premier Youth and Children’s Work (YCW) magazine and blogs at The Additional Needs Blogfather. He is father to James, who has autism spectrum condition, associated learning disability, and epilepsy. To find out more about how Mark’s work can help you, contact him at: marnold@urbansaints.org or @Mark_J_Arnold

Author Jolene Philo

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Managing Mixed Emotions When Our Kids with Disabilities Go Back to School

Managing Mixed Emotions When Our Kids with Disabilities Go Back to School

by | Aug 23, 2023 | Different Dream, Grief, How-Tos, School/Education, Special Needs Parenting

Managing Mixed Emotions When Our Kids with Disabilities Go Back to School

Managing mixed emotions when our kids with mixed emotions go back to school can be, well, emotional. Guest blogger Kristin Faith Evans is experiencing a wide gambit of those emotions this August and is here to share her best feelings-management techniques with you today.

Sending our children with special needs back to school can raise different emotions in us. Some of these emotions can cause pain, stress, or guilt. Let’s examine some emotions commonly experienced by disability parents and how to process them in healthy ways.

Grief: As a special needs parent, you will likely experience a special kind of chronic grief throughout your child’s life, and the start of the school year can trigger a wave of sorrow. With this new milestone, you may be sad that your child is developmentally behind other children, is not as independent, or has difficulty making friends.

Fear: As special needs parents, we are sometimes afraid that other kids will treat our children meanly or take advantage of them. We might fear that our children will have a medical emergency or become injured, and heaven forbid, that they might be mistreated by their teachers or other school professionals. It makes sense that you might be experiencing some anxiety and feeling overprotective as your child begins a new school year.

Jealousy: Watching other parents drop off their typically developing, seemingly healthy children might spark some envy, maybe even anger in your heart. To be honest, attending the open house night and watching all the other thirteen-year-old girls huddle together sent a pang of jealousy throughout my body. We might even fantasize about having a “normal life” at times.

Managing Your Hard Emotions

Parents caring for children with special needs experience those hard emotions. It’s normal to feel this way. Yet, becoming stuck in them can become unhealthy. These steps can help you process your feelings:

  1. Reflect on the past couple of days. Look for reasons why you might be feeling this way. Sometimes there’s a specific event that prompts our emotions, other times it’s difficult to identify the trigger.
  2. Allow yourself to feel and grieve. Have a good cry. Observe yourself experiencing your difficult emotions. Let yourself just be for a bit. Be tender, supportive, and accepting of your painful emotions.
  3. Reframe your situation. Is there a way to look at your circumstances differently or more hopefully? If not, that’s okay too.
  4. Return to now. Come back to the present. Focus fully on your day, one moment at a time.

Managing Positive Emotions

Sometimes even positive emotions can be scary, but I encourage you to let go of the fear of positive emotions even as you honor your hard ones.

Hope: Choose an optimistic outlook, expecting a good year, and focus on how your child will grow.

Joy and Gratitude: Celebrate your child’s season and express thankfulness for their life. List out your child’s amazing qualities and all the ways that they’ve made progress so far.

I pray blessings on your children as they begin a new school year, and blessings on you as you begin managing mixed emotions when our kids go back to school. You’re invited to use the comment box to share what you’re experiencing as your child goes back to school.

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Kristin lives with her husband, Todd, and their two children in the Nashville, TN area. She is an author, speaker, mental health counselor, and a mom of two children with rare genetic disorders and complex needs. Her greatest passion is teaming up with her husband to empower other parents of children with disabilities, mental health disorders, and medical complications. She hopes that you may find encouragement and support on their website www.DisabilityParenting.com

Author Jolene Philo

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How Much Is Too Much to Tell Teachers about my Child’s Disability?

How Much Is Too Much to Tell Teachers about my Child’s Disability?

by | Aug 16, 2023 | Different Dream, How-Tos, School/Education, Special Needs Parenting

How Much Is Too Much to Tell Teachers about my Child’s Disability?

How much is too much to tell teachers about my child’s disability? Maggie Gale, today’s guest blogger and mom to a daughter with medical special needs, asked that question at the start of every school year. Even though she was a teacher herself, she spent much time and energy trying to answer that question. Eventually, she came up with 3 guidelines. Today she’s sharing them with you.

And I said to the man who stood at the gate of the year:
“Give me a light that I may tread safely into the unknown.”
Minnie Louise Haskins, 1908

Some things haven’t changed since 1908. When we stand on the brink of the new and unknown, it’s human nature to feel fearful and crave more light to help us move forward.

For parents with children in school, or those who, like me, work in a school themselves, the year has two gates. The first one is in January, as the Christmas decorations gradually lose their luster. We go through another gate in August or September, as summer vacation painfully draws to a close and the new school year unfolds.

Here we are again, edging towards that gate. The structure-free days of vacation can be a time of niggling worries as we anticipate the future, whatever the angle we’re approaching it from.

Children are wondering, “Will I make new friends?”

Parents are questioning, “What will my child’s teacher be like?”

Teachers are thinking, “How will my class be this year?”

For parents of children with special needs, there can be deeper, more complicated questions:

Am I doing the right thing, sending my child there?

Will the teacher understand what I’m saying?

Is my child safe?

My daughter was born with EA/TEF resulting in severe swallowing difficulties. New teachers, new classes, and new schools called for letters detailing her medical condition. Sometimes I felt I was writing into a void—Was my letter stored away in a file somewhere, or had it been read and understood?

  • How could I raise these issues with busy teachers without coming across as overprotective?
  • How could I be really sure that the non-medical teacher grasped the concept that when food was stuck in her esophagus, it meant a complete blockage—no eating or drinking at all, until it was removed, surgically if necessary?
  • How much is too much to tell teachers about my child’s disability?

After I became a teacher, I realized how important it is to communicate with the school with transparency and honesty but not with too much information. I also realized how helpful it is when a parent appreciates how many issues teachers juggle on a daily basis along with the specific needs of the child with special needs. Now, with 19 years of teaching experience, I suggest these guidelines:

  • Keep it open. Explain the issue by sending a leaflet or a website that explains your child’s specific problems. In this way, you will take the mystery out of it and answer unspoken questions lurking in the minds of children or teachers: Can I catch this? Will it ever get better? Why was he or she born this way?
  • Keep it matter of fact. Emotion is understandable but it can distract. We need all the focus to be on the child’s success.
  • Keep it succinct. You might be an expert on your child’s specific case, but what does the teacher actually need to know? Appreciate that teachers are balancing 101 issues on a daily basis, so try to support them by sharing only what they need to know. This will help build the strong team of school and family that your child needs.

Minnie Louise Haskins continued the poem quoted above with these lines:

“Go out into the darkness and put your hand into the Hand of God.
That shall be to you better than light and safer than a known way.”
So I went forth, and finding the Hand of God, trod gladly into the night.
And He led me towards the hills and the breaking of day in the lone East.

Sending my daughter, with her specific medical condition, to a new school, new teacher, new class felt like treading into the dark unknown. Somehow or other, I found that Hand to hold onto. Despite the ups and downs of swallowing problems and esophagitis, my daughter made it successfully through her school life and emerged on the other side as a strong, independent young woman who can manage her challenges.

As your child goes through the school gate this fall, don’t forget that Hand holding yours and your child’s is better than light and safer than a known way.

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Maggi is a wife and mother of two daughters. She is a primary school teacher, having worked in Africa for 14 years before moving to the Middle East. Her passions are her animals and art. Her youngest daughter was born with tracheoesophageal fistula (TEF). This birth condition was to be the start of an arduous journey, impacting the whole family for several years. Through writing, she hopes to turn her experiences into encouragement for others on similar paths.

Author Jolene Philo

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Looking for Lessons after Hard Times

Looking for Lessons after Hard Times

by | Aug 2, 2023 | Different Dream, Encouragement, Special Needs Parenting, Spiritual Support

Looking for Lessons after Hard Times

Looking for lessons after hard times is not what blogger Janae Copeland thought she would be doing this summer. Not after the increasingly good health her daughter Clark had been enjoying for several years. Yet, Janae has found much to be grateful for and to pass along to her daughter and you.

A year ago, I composed a post for the Different Dream blog entitled What a Difference a Decade Makes. In it, I outlined all the differences in the life of our daughter, Clark (and our whole family) since the early years of her life with EA/TEF. That version of me was in a place of reflection. My distanced recollections were a little blurry around the edges, not nearly as piercing as they had been ten years earlier. Little did that version of me know that in less than a year I would be thrust so forcefully back into that reality that it would take a few days to (literally) get my feet back under me again.

Let me explain…

Although Clark always had continued difficulties with eating and recurrent respiratory infections, we were eventually convinced by her doctors—and began to believe ourselves—that this was her baseline, the best she would be. We were told to be patient, that improvement would come with growth, and that things would eventually level out. And most of the time, that was true.

Except when it wasn’t.

In January and February of 2023, it REALLY wasn’t! Those months were some of the darkest days we’ve had in a while. Round 2 of COVID, which had been of little consequence the first time, was quickly followed by pneumonia that just wouldn’t give up. Now living in a new city, we commenced our journey anew, prepared to recite the facts of her early diagnoses, procedures, struggles, and histories to new doctors. Fortunately, every medical professional we encountered did all the things we so desperately needed them to do. They believed, they listened, and they looked at her from all angles with fresh eyes. By mid-May, we had an answer. Clark had another tracheoesophageal fistula.

No biggie, you might be thinking. TEF kids have recurrences often, They’re not terribly out of the norm. But hers wasn’t a recurrence. It was congenital. It had been there from the beginning and had never been detected, presumably because of location, position, and size. When we got the results, I couldn’t find my physical balance for a few days. But I had to quickly transition to action mode, and I did. Within days, Clark was scheduled for surgery at a hospital four states away.

As I write, Clark is now officially TEF-free for the first time in her life. We’ve had to adjust to our new reality. As her mom, I have had to rewrite her story. Until a few months ago, my spiel was “Clark was born with EA/TEF Type C, repaired at Day 2”. Now, the truth is a bit more complex. She’s an EA/TEF Type D, repaired at Day 4,089.

Even Clark is having a bit of an identity crisis. A month after the surgeries she began saying things like, “I can’t make my dragon sound anymore, Mom” and “I don’t really know how to cough now.”

As in the past, I am looking for lessons after hard times. Admittedly, this time was the hardest for me yet. Before, I took comfort in the fact that we bore the brunt of Clark’s early medical procedures for her, that her young age would protect her from the trauma and memories. Now, we were processing them with her instead of for her. I couldn’t take the burden from her again. So what have I learned?

  • Clark still lives up to her name. She is our Supergirl—brave, aware, and even on her hardest days, still looking out for everyone else.
  • God’s provisions are ever present and sufficient. As we had seen before, there were gifts and graces at every turn.
  • I have to give myself grace instead of beating myself up for not pushing harder when I suspected that there was more going on, when pushing could have saved her from years of needless suffering.
  • Only God knows the plans he has for Clark, plans that will help and not harm her, plans for a prosperous future.
  • Perhaps this time the lessons were as much for Clark as they were for us. My hope is that she will be able to look back one day and know how this journey was designed to bring her toward her purpose. That this is just a small part of what makes her special. That with God’s grace and the support of everyone that loves her, she can continue to grow into the brave and unique soul she was born to be. And that looking for lessons after hard times will bring her closer to her creator.

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Janae Copeland

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Janae Copeland is a wife and mother of 3 daughters. She lives in Jacksonville, NC where she is a K-5 music educator. She became a Different Dream mom when her oldest daughter, Jayda, was born in 2002 with hydrocephalus and cerebral palsy. Nine years later, her daughter Clark was born with EA/TEF and right microtia/atresia. Janae is grateful to have been entrusted with the care all 3 of her special daughters and seeks out opportunities to help other young mothers who may need support as they begin these same journeys with their own blessings from God.

Author Jolene Philo

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