The Time Warp That Is Disability Caregiving

The Time Warp That Is Disability Caregiving

The Time Warp That Is Disability Caregiving

The time warp that is disability caregiving is a concept that came to me in the middle of the night. Before you categorize me as a crackpot, be assured of this:

The thought was not caused by alien abduction.
No zombies came into the bedroom and made a midnight snack of my brains.
Ditto for vampires turning my blood into an iron-rich smoothie.

Rather, the thought was the direct outcome of speaking at a trauma-informed conference yesterday. The conference was aimed at educators and mental health professionals. The percentage of educators to the mental health professionals was at least 60/40. Maybe more. As a former teacher, I enjoyed spending the day talking with “my people.”

One of them, a sweet young teacher, asked, “How long did you teach?”
“Twenty-five years,” I said.
“When did you leave the field?” she wanted to know.
“In 2003,” I replied.
“Wow!” Her eyes widened. “That’s twenty years ago.”

“What?” I thought. “Twenty years ago? Why does it feel like yesterday?”

The answer to that question came in the middle of the night. I sat bolt upright in bed, awakened by a wholly formed thought.

Because of the time warp that is disability caregiving.

And where did that thought come from?

After setting aside my theories about alien travel guides, zombie foodies, and nutritionally minded vampires, I pinpointed the real source: my personal experience with caregiving.

  • The first twenty years of my life, when our family cared for my disabled father in our home and watched him slowly fade away, still feel like a hundred.

To read the rest of The Time Warp That Is Disability Caregiving, visit the Key Ministry blog for special needs parents.

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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 Dance!, the third book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2023.

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Fear versus Faith

Fear versus Faith

Fear versus Faith

Fear versus faith is a distinction guest blogger Valeria Conshafter discovered while raising a daughter with a life-threatening birth condition. In this post she explains how parents raising kids with disabilities can tell the difference between fear and faith.

When you look at my daughter, you see her beauty and her youth, the healthy teenager she is. When I see my daughter, it’s from a perspective that encompasses blessings with trauma, gratitude with hurt.

I go right back to the times when we almost lost her.

People who know us may have already forgotten what it was like for her years ago. For me, the memories remain.

Years have passed and I am still healing.

I remember months at a time when parenting was all about life and death. That was also the time I started to learn about the dynamic between faith and fear.

Fear came unexpectedly.

We did not know our daughter, Sofia, would be born with a rare defect. After a decade of infertility treatments, the expectation for her arrival was a dream come true. Fear took over fast. The anticipation of the most special day of our lives turned into a nightmare.

The months following were like carrying around a heavy dark cloud above my head. The multitude of specialists and the waiting of surgeries became our daily routine rooted in an excruciating fear of the unknown.

I learned then that fear takes over like a storm from a hurricane.

You don’t know how bad it is until it hits you. You lose your focus, your peace, and yourself. Living in fear is a constant state of alertness telling you that the worst is yet to come. It is like being paralyzed in a story that is not yours. It’s a vortex of emotions where you can easily get out of control. It’s not a safe place because you can’t see past the struggle.

Fear seems like the end.

You see, during the most difficult times, when I watched the doctors call Code Blue again on my daughter, this deep and desperate cry inside my soul urged me to kneel on that cold hospital floor and give up.

Sofia’s first surgery 24 hours after her birth was also a time I started my faith journey.

During the despair of my daughter undergoing extremely long and difficult surgeries, faith showed up despite the fear in my heart. My mother pleaded with me to pray in gratitude for Sofia’s life when her diagnosis first reached our ears.

How was I supposed to pray, I thought, when my world is crumbling?

Throughout the months following that first surgery and the dozen surgeries after, I became acquainted with fear versus faith.

I learned that faith takes practice.

Faith is the practice of letting go and letting God in. It’s an intentional act of releasing all my burdens to God, trusting He has this. Even when I cannot see past the battles I am facing.

Fear gets out of control because I am not in control at all.

In certain circumstances while dealing with Sofia’s health, I believed that fear had a deadline. I dwelt with fear until I reached the end of its rope. Then I had nothing to hold on to. I had to release it and let go. In other words, I had to hope that something greater than fear would take over because I could not handle it anymore. Nothing else to do, no more crying, no more medicine. Faith in God was all that I had left.

So, I turned to faith, and as I waited, fear subsided.

Faith reigns. Fear doesn’t. Fear takes your breath away. Faith gives you an opportunity to breathe and rest. In every unknown medical situation my daughter goes through, I can be certain that fear will be there to greet me. But I also know that faith will carry me through whatever we may have to endure.

Faith overcomes fear.

When you see my daughter, I hope you see the miracle her life is, a proven example of fear versus faith. When I see her, I remember everything and smile in gratitude for God’s faithfulness.

I can now see past the trauma and the hurt because my faith is greater than my fear ever was.

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 Image courtesy of Valeria Conshafter

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Valeria Conshafter is a native of Brazil. She has a background in Counseling Psychology and currently works for a women’s organization providing emotional and spiritual support to women all over the country. She loves writing, cooking, and praying for her family and friends. Valeria lives in Houston, Texas, with her husband Todd, their 15-year-old daughter, Sofia, and their two Standard Poodles, Chocolate and Oreo. You can find Valeria on InstagramTwitter, and Facebook.

Author Jolene Philo

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4 Ways Disability Families Can Heal after Being Hurt by a Church

4 Ways Disability Families Can Heal after Being Hurt by a Church

4 Ways Disability Families Can Heal after Being Hurt by a Church

4 ways disability families can heal after being hurt by a church? What? you may be thinking, only 4? Our family could use at least a gazillion! Trust me when I say that guest blogger Kristin Faith Evans knows where you’re coming from. In this post, she shares 4 effective strategies she and her family have used to heal after being hurt by a church and hold tight to their faith.

Many families have difficulty finding a church home or continuing to attend their home congregation due to their child’s special needs. They may have felt misunderstood, unsupported, or rejected. Some were even asked to leave because of their child’s behaviors or needs. In fact, almost 1/3 of special needs families have reported that they have left at least one church because their child was not included or welcomed. If you’ve been hurt by the church, consider taking these steps toward healing.

#1: Tell the Leadership How You Feel

In some cases, speaking to the leaders may cause you further emotional harm. If you believe this might be true, skip this step. But if you haven’t already and you feel comfortable, share how the situation has hurt your family. It’s possible they didn’t realize, understand, or know how to respond. Bringing it to their attention might also help prevent another family from feeling the same way in the future. Perhaps the situation can even be resolved, and the church can support your family in staying. Or it may be the healthiest decision for your family to find a new congregation. But you can leave knowing that you have communicated and attempted to reconcile.

#2: Talk to Someone You Trust

When we’ve been hurt, our natural instinct is to isolate. Being emotionally harmed by a church can be traumatic and keep us from forming new relationships. It may be hard, but reach out and talk to someone you know will be objective and supportive. It can be a family member, friend, another Christian outside that church, a support group member, or a counselor. A critical piece of your healing will be processing your experience with others.

#3: Forgive Those Who Hurt You

Anger and resentment can be toxic and keep you from healing and moving forward. Forgiving may not be easy and can take time. Talk to God in prayer about your emotions and desire to forgive those who hurt you. Receive his comfort, healing, and counsel. Forgiving does not mean that you agree with what they did or that it was right. It means that you are no longer going to hold bitterness in your heart and that you are giving your pain to God so you can move on and heal. Scripture teaches us to: “Make allowance for each other’s faults, and forgive anyone who offends you. Remember, the Lord forgave you, so you must forgive others” (Colossians 3:13, NLT).

#4: Don’t Give Up on Church

Visiting a new church as a special needs family can be scary, especially after a bad experience. But remember—how that church treated your family doesn’t represent all Christians or how Jesus feels about your child and your family. Belonging to a healthy church will bring you strength, hope, spiritual growth, connection, and joy. Ask around and visit churches that have disability ministries, respite programs, or support groups. And take your time. Pray that God will lead you to the right church where your family can flourish.

What do you think of these 4 ways disability families can heal after being hurt by a church? What would you add to the list? Leave your suggestions below.

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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

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We are Not Enough for our Kids with Disabilities

We are Not Enough for our Kids with Disabilities

We are Not Enough for our Kids with Disabilities

We are not enough for our kids with disabilities. As parents, we know this to be true. Though we do our best, we are not enough. Guest blogger Heather Braucher points us to the encouragement we need and to the one who is enough.

“You’re such a good mama.”

When a fellow mom said this to me, I told her that her verbal encouragement felt like a drink of water that upon swallowing made me realize just how thirsty I was. Just how “dehydrated” I was.

Why was I dehydrated? Well, I have three kids—11, 10 and 7. My 11-year-old is sister to 2 brothers with special needs. We are very aware that her experience in this dynamic is not to be ignored. She is, as some would describe:

  • The sibling
  • The sib expert
  • The other one
  • The neurotypical one

In my mind, she is the one that I can’t do enough for. I have to battle this thought daily. I have to remind myself of the ways that I attend to her needs and show her love, simply because the effort placed toward the boys is more obvious.

We have spent countless hours supporting and advocating for our boys’ needs, as well as constant time mediating their social interactions that often go awry. A significant amount of attention is given to them as a result of their extra needs and I do not regret this. It is often out of necessity, whether we are trying to support them, help them regulate or attend to a task, or even diffuse a meltdown.

In order to ensure some sort of balance, we have promised ourselves never to lose sight of our daughter and the family as a whole. The truth is, no matter how much you do, as a parent and as a parent of kiddos with more needs, it is a daily battle to believe you are doing enough.

But an even greater truth that we have come to embrace is this:

We are not enough.

I cling to this reality.

I am not enough, and I shouldn’t be.

For my kids, my spouse, and my friends, I shouldn’t be enough. I shouldn’t be their all in all. Because there is only one who is enough.

Jesus

My hope and strength have to be in him alone. He equips me to be a source of love and provision for my children, but I am not their everything.

He is.

Just like my kids and my spouse and my job and my friends and my things are not my everything. None of these will ever be enough for me either. Because we were not created that way. We were created to need and worship our Creator because HE is sufficient.

He is enough.

I am so grateful for those who breathe life into others, with simple words of encouragement like “You are such a good mama.” I will continue to drink deeply of this holy water. And then I will respond.

He is such a good God, and he is enough.

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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Heather Braucher is a member of the “Braucher Bunch” aka her energetic family of 5. The bunch includes her husband and their three children, all of whom are dominant and extroverted and are going to change the world (if she can keep them alive!) She has always held a passion for writing, but motherhood has given her a reason to share her experiences, heartaches, and victories with others. In her writing you will hear stories of hope as well as grief, as her family has navigated life in ministry in the US and overseas, all while discovering that 2 of her children have special needs. Her desire is to provide others with connection, understanding, encouragement and laughter, all washed with the love of Christ.

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Caregivers Can Do Hard Things

Caregivers Can Do Hard Things

Caregivers Can Do Hard Things

Caregivers can do hard things.

In the nearly sixty-seven years my mother and I shared on this earth, she taught me many lessons. The one I leaned on the most as our time to say good-bye drew near was this one.

Caregivers can do hard things.

As a child, I didn’t know this. When I was eight or nine, my teacher gave a lecture about the importance of standing up for ourselves on the playground. Around the same time, my Sunday School teacher challenged us to tell others about Jesus, even when someone scoffed. I remember thinking, “I don’t want to do that. I just want my mom to take care of me.”

Mom was good at that. She cared for a lot of people.

  • her husband, my father, for seven decades after his multiple sclerosis diagnosis.
  • her children, insisting we work hard in school so we could go to college.
  • her students, expecting them to learn and praising their efforts.
  • my infant son, pouring my breast milk into his feeding tube, so I could keep pumping.
  • my daughter, while my husband and I tended to our son in the hospital after another surgery.
  • her dying mother, holding her hand and not letting go until after she drew her last breath.

She showed me and my siblings that caregivers can do hard things. Because of her, when her memory began to fail and she needed others to care for her, my brother and sister and I were ready.

To read the rest of Caregivers Can Do Hard Things, 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 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 Dance!, the third book in her West River cozy mystery series which features characters affected by disability, will be released October 2, 2023.

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Why Did this Happen to My Child?

Why Did this Happen to My Child?

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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