Ekalaka, Montana: The First Town Over the Border

Ekalaka, Montana: The First Town Over the Border

Ekalaka is the first town west of Camp Crook, the town upon which See Jane Run! and the rest of the Tipperary County Mystery series is based. I snickered when I first heard the town’s name because, I mean really, who names their town something that sounds like a cheerleading chant.

Ekalaka, Ekalaka, shish boom bah!

Someone mentioned that Ekalaka was named after an Indian princess. An interesting factoid to toss around, but that was all to a young college graduate who was pretty sure she knew everything. Before life broadened her lens and took her down a peg or two.

In June of 2007 a fellow writer, who had once lived in Ekalaka, and I visited the tiny western towns where we had once lived. We toured Ekalaka’s museum, which was amazing for a county seat which boasts a population of 369. The museum even has a complete stegosaurus skeleton. More on that in another post.

The exhibit about Ijkalaka Eagle Man, the town’s namesake, took the older and wiser me down a few more pegs. Like twenty. Or a hundred. Or a thousand. When I read the plaque under Ekalaka’s portrait, I thought of the changes she experienced–moving from a Native American upbringing to life on a ranch to her marriage.

How did she navigate those changes? What was it like to see her way of life obliterated? How did it feel to learn you were worth eight horses and a hundred pounds of sugar?  

Those are questions I’d love to explore and answer in a novel. Maybe once the Tipperary County mysteries have run their course. The wonderful thing about fiction is that once the research about a time period and place is done, imagination and life experience can fill in the gaps. They can answer the question that’s niggled at me since I read the plaque in the museum: What it was about Ekalaka that led white settlers to name a town after her? In my book, that’s a question worth answering and a story worth writing.

Eklalaka. It’s a wonderful name for a town.

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Finding Grace in All the Wrong Places

Finding Grace in All the Wrong Places

Finding Grace in All the Wrong Places

Finding grace in all the wrong places has long been the purview of parents raising children with disabilities. When COVID hit the truths we have lived since our kids’ diagnosis–there’s no instruction manual for our lives, neither we nor the experts have any idea of what we’re doing–became the temporary norm for families around the country and the world.

For a brief moment when the shut down first began, many eyes were opened to the manifold graces that connected us despite the pandemic, and we were grateful. Far too quickly, our society allowed the hardness of our changed changed circumstances harden our hearts. Far too quickly, we forgot about grace.

My personal wake up call came on August 10, 2020 when an intense windstorm, which I have since learned is called a derecho, swept through our community and my entire home state. For 3 1/2 days, our family was without electricity or Wi-Fi, and our cell service was non-existent to severely limited. I had no contact with my mother, who lives in a memory care unit. No way to encourage caregiving families through my blog or social media. No way to power our refrigerator or the freezers that feed our multigenerational family of 6 until our neighbor, whose electricity was restored quickly, allowed us to plug into his.

Since then, I have made a practice of finding grace in all the wrong places in the midst of a pandemic that feels like it won’t. These manifestations of God’s grace have helped me maintain and grow relationships until physical gatherings are safe once again.

Old-fashioned mail. Finding an unexpected personal letter or card in the mailbox is good for the soul. So is sending a letter and imagining the lift it gives its recipient.

Phone calls. I call my mother every day. It’s only for a few minutes, and I do most of the talking.  Those chats are Mom’s lifeline to the world, and I’m grateful for the grace of technology that makes them possible.

Sticky notes. The physical kind that can be left on the door for the delivery person. Or for others in my family to ensure they will see them and life will move forward. Having lived until age 25 without them, my delight in them is unending.

FaceTime. Once a month, we connect with our out-of-state grandkids, ages 5 and 7, on FaceTime. We’ve taken them on virtual tours of our property, the used camper we bought this summer, and to show them how work on our house addition is progressing. What a grace to share life with them this way!

YouTube movies. When the construction crews come to move dirt, build forms, or pour cement I film and upload short videos to YouTube. The grandkids love when they receive links to videos of what’s going on at Papu and Grammy’s house. Grace and more grace.

Texting. Some of our church community group members have experienced devastating losses recently. Texting has allowed them to communicate their prayer needs and for us to respond in rapid real time. Immediate, communal prayer for those submerged in grief is grace, all grace.

Online school. Every day I counter my negative thoughts about what my grandchildren aren’t experiencing through online school with what their pandemic education would be like without it. So much grace would be unavailable to them. Their lessons would come by mail. There would be no instant answers to questions or feedback about homework. Kids wouldn’t know what their teachers look like. They would have no connection to classmates.

Zoom. Because of Zoom I’ve recorded podcasts, presented at conferences, been involved in a denominational launch of a special needs and disability ministry, participated in a women’s Bible study, done live Facebook interviews, and more. All great, but they don’t hold a candle to the grace of our family gathering virtually to celebrate our grandson’s 5th birthday. Or the grace of family history trivia contest with my husband’s family joining from around the world.

Now it’s your turn to open our eyes to the grace around us. Leave a comment below about where you have been finding grace in all the wrong places since either your special needs parenting journey or the pandemic began.

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Jolene Philo is both parent and daughter of loved ones with special needs and disabilities, as well as a former educator who worked with children for 25 years. She’s written several books about caregiving, special needs parenting, and childhood PTSD, including the recently released Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilties, which she co-authored with Dr. Gary Chapman. She speaks internationally about caregiving and parenting children with special needs and blogs at www.DifferentDream.com. Jolene and her husband live in central Iowa.

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The Special Needs Lord’s Prayer

The Special Needs Lord’s Prayer

The Special Needs Lord’s Prayer

The special needs Lord’s prayer came together for Mark Arnold on a Sunday morning when he attended virtual church with his son James. Here’s the fruit of his musings and his labor.

As I watched church on Zoom Sunday morning, enjoying the opportunity to relax and be in the congregation for a change, we reached the part of the service that is so well known that the words don’t need to be provided—the Lord’s Prayer.

As I spoke these oh-so-familiar words last Sunday, speaking these oh-so-familiar words, I thought of them in the context of parenting a child with special needs. Since then, I’ve created my version of the special needs Lord’s Prayer. I hope you find it helpful!

Our Father in heaven. It’s great to call you Father! My son can say Daddy. It’s one of the few words he can say, and it melts my heart. Is that what happens when I say Father to you? I think it is, because you love me even more than I love my son, and that’s a lot!

hallowed be your name. Hallowed means holy, sacred, and yet you clear up when I make a mess, which is often. Parenting a child with special needs, I know what that’s like and how it sometimes feels. But you clean me up and sort me out time and time again. Never minding. Always loving.

Your kingdom come. Sometimes, there’s a beautiful look on my son’s face as we pray. Or a light in his eyes as I sing Jesus loves me, this I know to him. He joins in with Yes! Jesus loves me, and I glimpse heaven as your Holy Spirit ministers to him. Thank you!

Your will be done, on earth as in heaven. However you want to work in and through us to share your will with others, we want that too. Lord, use the journey we are on, the good and the challenging stuff, to help, support and inspire others.  Let us always serve you.

Give us today our daily bread. Our daily bread is everything that sustains us. It includes more than food–the joys, the delights, the thrills of special needs parenting. It fills us and nourishing our minds, bodies and souls for hard days. It gives us reserves to draw upon. You always give us what we need and more.

Forgive us our sins. So many times we say, think and do things we shouldn’t. When we walk into a poo smeared room and swear before we can stop ourselves. When we are so tired that we just sink into self-pity and ask why me?

As we forgive those who sin against us. This can be so hard! But we must forgive the person who sneers at our child during a meltdown. The person who offers opinions on our parenting ability. The social worker who says our respite care had to be cancelled. Those who take away needed financial support. If we don’t forgive, bitterness and resentment fills the void.  If we do forgive, we are released from negative, life-draining emotions and filled with God’s grace and love.

Lead us not into temptation. Being tempted is so easy. To be economical with the truth when filling in financial support applications. To find comfort and temporary satisfaction in unhealthy or inappropriate ways. To say what we think about people and their opinions when they just don’t get our lives.

But deliver us from evil. Save us from the lack of forgiveness we harbor. From the temptation we fall into. From giving the enemy any power over us; especially from using our families and children with special needs to get to us.

For the kingdom, the power, and the glory are yours. We pray that you give us what we need. Equip us to serve you and others and to give honor and glory to you and your kingdom. Use our life journeys, our family experiences, our passions, our knowledge to the benefit of others. It’s all yours. All for you.

Now and forever. Eternity has started. New life has begun. Help us not to waste a second but to make it all count.

Amen. As James is able to say–Amen!

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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.

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The Emotions of an EA/TEF Parenting Life

The Emotions of an EA/TEF Parenting Life

The Emotions of an EA/TEF Parenting Life

The emotions of an EA/TEF parenting life run a gambit of emotions. Emily Duckworth, today’s EA/TEF Awareness Month guest blogger describes how she hangs onto hope when despair creeps in.

Here we go again. Yet another no call, no show with a scheduled interview for a home health nurse for Colt. I am angry and I can’t explain it, but I am also hurt. He deserves to have such an amazing nurse. I look at our son and feel such a mixture of guilt, fear, pride, and joy. These are the emotions of an EA/TEF parenting life.

There is guilt daily.

Wondering what else can I be doing as his Mother? As his advocate? Guilt for the time taken away from his sister when he is in sensory overload and just needs more. Guilt for momentarily losing sight of how far we have come and regressing into the longing for what might have been. The guilt of screaming, “Why him? Why us? Why me?”

I feel fear intensely.

I think about the what ifs. When I think of what he felt birth, what he feels now. Coming early, struggling to breathe, struggling to survive. Continuous appointments, poking, prodding. Fear of where this condition may take us. The fear of losing a child. There are moments of fear so pulling, grating, consuming that I can’t help but release it in a silent scream. Pleading, gripping my chest, losing breath, and feeling a grief I never knew existed.

Then comes joy.

It floods into the darkness. The moments my son truly engages with me and I know he understands. He shows me he is happy regardless of his anomalies, struggles, and pain. The complete joy of seeing him with his sister and their mutual adoration. Joy in every smile, every laugh. Joy in all of his firsts, his own excitement, and his daring enthusiasm in doing the things he has been told not to do. We find joy in his past, present, and future. We know we are lucky. We know we are blessed. We are thankful.

We feel pride.

We are proud of everything he has overcome in such a small amount of time. Pride for how hard he works to try and reach milestones. His struggles to breathe, eat, and talk. He takes his struggles in stride, and though we have terrible lows, we have incredible highs.

We will continue to feel so much more than we knew we could.

But when we lose sight due to guilt, fear, and negativity, we revert back to our need for joy, for hope. The emotions of an EA/TEF parenting life are hard. This life is hard. So hard. But we get to witness a miracle daily and we are so proud of who our son is, who our daughter is, and who we have become as a family of our special needs warrior. 

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I am Emily Duckworth, wife of Cameron Duckworth and the proud Mama of Ayla, 10 and Colt, 2. Our son Colt was born 8 weeks prematurely. Although I had always felt something was off with my pregnancy, we had never expected the diagnosis of esophageal atresia with a tracheoesophageal fistula (EA/TEF). Colt endured 5 surgeries, including the insertion of a tracheostomy tube to breathe due to the lasting effects of tracheomalacia

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Wonderfully Made Family Camp, 2018: A Look Back

Wonderfully Made Family Camp, 2018: A Look Back

Wonderfully Made Family Camp, 2018: A Look Back

This shot of parents goofing around in the photo booth set up for Saturday evening’s Adult Night Out says so much. To see these caregivers able to shed their duties for an evening of laughter and fellowship shows that WMFC is for the entire family, not only for the kids with special needs.

Wonderfully Made Family Camp 2018 was a 68 hour whirlwind that impacted families and volunteers alike. Mere words can’t communicate how the days spent together impacted 40 families comprised of 200 family members and the 100+ volunteers who served unselfishly. So instead of trying to tell you in my own words, I’m using words spoken and pictures taken by others who attended the third annual camp held at Hidden Acres Christian Center in central Iowa.

Wonderfully Made Family Camp, 2018 was an overwhelming success as these pictures and testimonials show. Grab a tissue before you watch the video!

We had the privilege of going to Family Camp this year and it was such a blessing. Catching up with old friends, making new ones, and the time we all spent together was so wonderful! All the buddies, staff, parents, kids, and folks that put this on made this a memory our family will never forget! ~ from a parent

Wonderfully Made Family Camp, 2018 was an overwhelming success as these pictures and testimonials show. Grab a tissue before you watch the video!

Year 2 of Wonderfully Made Family Camp in the books! What an amazing weekend and we are just so humbled and blessed that we had the privilege to go. The overwhelming love from all the staff and volunteers touches my heart on such a deep level. ~ from a parent

Wonderfully Made Family Camp, 2018 was an overwhelming success as these pictures and testimonials show. Grab a tissue before you watch the video!

Thanks to everyone who worked so hard all year to make another year of WMFC camp run so smoothly. My son and I both enjoyed the activities Friday night and Saturday. We also enjoyed the many thoughtful gifts in our room. My son can’t wait to use the pool items and we both enjoyed the popcorn tonight while watching a movie before bed. ~ from a parent

Wonderfully Made Family Camp, 2018 was an overwhelming success as these pictures and testimonials show. Grab a tissue before you watch the video!

This has been such a wonderful camp opportunity for our family. The board works hard fundraising all year so that it isn’t a financial hardship for families to go. If you or someone you know would like to help families attend next year, they are always looking for sponsors! It takes a lot of volunteers to pull it off too! ~ from a parent

Wonderfully Made Family Camp, 2018 was an overwhelming success as these pictures and testimonials show. Grab a tissue before you watch the video!

Hidden Acres is always a great time! It was a great transition from school to summer – literally coming home from the last day on Thursday to finish packing up and heading out! And there’s never one favorite thing because there’s so many fun things and just the entire experience wrapped up together! ~ from a parent

Wonderfully Made Family Camp, 2018 was an overwhelming success as these pictures and testimonials show. Grab a tissue before you watch the video!

First time serving the camp. It was a wonderful experience and a true blessing. Came away with some new friends, and really learned a lot! ~ from a volunteer

Wonderfully Made Family Camp, 2018 was an overwhelming success as these pictures and testimonials show. Grab a tissue before you watch the video!

This past weekend has been one of the best weekends of my life. I can not put into words how amazing it was to serve a family in such a simple way. For those who don’t know my sister and I spent the weekend at a camp to serve families who have been blessed with a child who is disabled. It was the best weekend of my life. From hanging out with the family I severed and seeing the young lady laugh and enjoy some outdoor activities to stay out late by the fire getting to know people from my church on a different level. I am already looking forward to next year and can’t wait to continue serving families in so many ways! Wonderfully made family camp you truly have blessed me ~ from a volunteer

Wonderfully Made Family Camp, 2018 was an overwhelming success as these pictures and testimonials show. Grab a tissue before you watch the video!

Front row: Naomi Norris, Rhonda Brown Jolene Philo. Back Row: Beth Castile, Christin Lantz, Kim Combes, Erin Hefner, Marie Christian

This is the leadership team God used to make Wonderfully Made Family Camp happen the weekend of May 31-June 3, 2018. We look pretty good after saying teary good-byes to the 200 family members and 100+ volunteers.We’ll be going to bed early this week to recover in time for Friday’s meeting where we start planning for next year. Three years in, this is the first photo of the leadership team all together. We learn slow, but we learn! ~ from a planning board member

Wonderfully Made Family Camp, 2018 was an overwhelming success as these pictures and testimonials show. Grab a tissue before you watch the video!

We had 5 kiddos with 5 awesome buddies, but this young man did an amazing job with Stevie! Thank you Alexander. ~ from a parent

Wonderfully Made Family Camp, 2018 was an overwhelming success as these pictures and testimonials show. Grab a tissue before you watch the video!

It was a weekend filled with fun, love, gnats, great food, friends, new friends, gnats, tears, joys, swimming, boating, gnats, sunshine, pictures, horses and so many memories! We are all worn out, but totally blessed! Thank you to over 100 volunteers that gave selflessly and over 200 family members that shared their lives with us. Blessed by WMFC 2018! ~ from a planning board member

If you’re hungry for more, check out the Wonderfully Made Family Camp, 2018 video created by the talented Kevin Barber. Grab a tissue…you’ll need it. If you feel so moved, please consider making a donation for next year’s camp to move us closer to our $40,000 goal.

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

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3 Signs You Are a Caregiver with Compassion Fatigue

3 Signs You Are a Caregiver with Compassion Fatigue

3 Signs You Are a Caregiver with Compassion Fatigue

Could you be a caregiver with compassion fatigue, or as it’s also known, secondary trauma? That’s a question posed at The Engage Conference sponsored by 99 Balloons on April 14, 2018. The topic first arose on the drive to the conference and again during the Mom’s Panel breakout session. Moms talked about their love for their children, as well as their daily challenges and duties, which make it hard for them to leave their children.

As I listened, the lightbulb in my brain switched on. The emotions the moms were sharing were symptomatic of a caregiver with compassion fatigue. After the conference, I distilled their descriptions into the following 3 warning signs.

  1. The caregiver feels trapped and overwhelmed, never able to leave the child because there’s no one else willing or able to provide care. Time constraints, schedules, money worries, and distance make it impossible to get away. People, even family and good friends who truly want to help, don’t understand the burdens of caregiving. Caregivers in this situation worry that if they tell someone what their life is really like, they’ll be labeled as whiners and complainers.
  2. The caregiver feels indispensable. This caregiver may have more resources and a better support system than described in #1, but doesn’t tap into them because no one else can care for their child as well as they do. While it is true that loving parents know their children better than anyone else and do provide the best care, plenty of other people can provide good care. Good enough care so parents can get away and practice self-care, attend to their children’s needs, and work on a marriage.
  3. The caregiver must maintain complete control. This warning sign is similar to #2, in which the caregiver’s primary concern is the level of care the child receives. But in this case, the primary concern is how releasing control impacts the caregiver. For example, the caregiver knows that after someone else watches their child, the child will wet the bed, aberrant behaviors will increase, or the child won’t sleep, creating a mess for the caregiver. Therefore, the caregiver creates a strict, inflexible routine in order to maintain complete control, fearful that if one domino falls, the whole world will come crashing down.

If one or more of the warning signs describes you or a caregiver you love, you need to let people into your life by asking for help, taking advantages of programs that provide caregiving support, and training friends and family to care for your child so you can take a break. You may also benefit from a professional counselor or therapist. Your child needs a physically and mentally healthy caregiver, so take the steps necessary to be the person for your child.

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

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