The Empty Nest

The Empty Nest

by | Mar 8, 2023 | Different Dream, Encouragement, Special Needs Parenting

The Empty Nest

The empty nest feels like an unachievable possibility to caregiving parents whose children have conditions that threaten their lives and restrict their independence. In today’s post, guest blogger Maggi Gale looks at the empty nest she and her husband now share and wonders how it came about.

Out walking with my dog yesterday, something unusual on the ground caught my eye. It was a tiny bird’s nest that had fallen from a tree. As an early years teacher, I couldn’t resist picking this up and taking it home. We had talked about nests this week in class—now I could show them a real one!

Glancing at the nest this morning as it sat on my shelf waiting to go to school on Monday, I suspected there might be a deeper message in it, not for my class, but for me.

I’m a mother of 2 daughters, the younger one being born with TOF/OA (we’re British—TEF/EA for Americans). As anyone with experience with this condition will understand, early childhood in our home was an intense battle with a tricky oesophagus.

It is astounding that one small body part can wreak such havoc over family life for years on end. Our mealtimes were often fraught with vomiting, our social engagements sometimes ruined by “funny” comments about her “smoker’s cough,” and I had a single-track mind—how to feed my daughter so that she could escape the downward spiral of chronic infections.

We weren’t the sort of family you would call easy company for a night out.

Yet here we are in 2023, with both of our daughters leading independent, successful lives—flying their wings you could say. My TOF baby is now a 19-year-old au pair in England. That’s 4000 miles away from us, her mum and dad, as we work in the Middle East.

How did we get from there to here? I think the answer is one slow step at a time. In our case, the progress was so slow that it can only be perceived through looking back. The incidences of food getting stuck gradually turned from a few times a week to something less often. The chaotic rushes to the hospital became less frequent. And as she grew, my daughter assumed more responsibly for herself, preventing these awful incidences through meticulous planning, avoidance of triggering foods, and laborious chewing. That’s a lot to ask from a teenager, but life had given her very little choice.

People sometimes ask me if I miss my daughters. Well, nowadays, sometimes the fridge is very organized, which feels odd. Occasionally I notice a lack of Taylor Swift music blaring out of the bathroom, which feels strange. And now my calendar has fewer confusing scribbled notes on it of comings and goings, which looks a bit too tidy, somehow.

But do I miss them?

In my heart, there’s no room for missing. After our battles to feed and nourish my daughter, I cannot be anything but grateful that she has grown! After the years which seemed full of all of medical chaos, my daughter is now able to manage her condition, with just a little support on the end of the phone when needed. I am so grateful that somehow, imperceptibly at times, God not only got us through, but that my daughters have both become independent, successful, capable, and caring women.

Maybe you have your own version of this story. Your battle might not be with an oesophagus, but if you read this far, chances are you can relate to something I’m saying. In a word, there is hope. As we look back, we can sometimes see how far we have come. That tiny, empty nest I found has shown me that today.

Maybe I won’t take it to school after all.

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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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Empowering Kids with Disabilities, Part 1: Meet Basic Survival Needs

Empowering Kids with Disabilities, Part 1: Meet Basic Survival Needs

by | Feb 27, 2023 | Different Dream, How-Tos, Special Needs Parenting

Empowering Kids with Disabilities, Part 1: Meet Basic Survival Needs

Empowering kids with disabilities is important, right? I mean, parenting is about empowering and equipping our kids to self-advocate to the best of their abilities, right?

And yet.

If my experience of raising a child with special needs is anything like yours, empowering my kid with disabilities rarely reached the top of my parenting priority list. For a long time, we were too busy keeping our son alive. Once he was healthy, we were too busy recovering from the trauma of keeping him alive.

You know what I mean.

Many years later, during my career as an elementary teacher, I took a professional development course based on William Glasser’s Choice Theory. The name of the course is long forgotten, but it revolutionized my teaching. It changed my relationships with students because it showed me how to empower them, whether or not they had disabilities, by addressing their basic human needs every single day.

It was powerful stuff.

Even after I left teaching, Glasser’s principles found their way into my books. They now inform my work with adult learners and parents raising kids with disabilities. They shape how I interact with my adult children and my four amazing grandchildren. The principles work because they focus on the needs common to humans of all ages. So what are those needs?

I’m so glad you asked!

As identified by Glasser, the five basic human needs, all powerful motivators in children and adults, are survival, love and belonging, power, fun, and freedom.

To read the rest of Empowering kids with disabilities, visit Key Ministry’s 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 Sing!, the second book in the West River cozy mystery series, which features characters affected by disability, was released in November of 2022.

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The Joy of an Unexpected Breakthrough

The Joy of an Unexpected Breakthrough

by | Feb 22, 2023 | Different Dream, Encouragement, Special Needs Parenting

The Joy of an Unexpected Breakthrough

The joy of an unexpected breakthrough is worth waiting for. Guest blogger Mark Arnold felt that joy when his son James recently overcame his anxiety and did something he hadn’t done for five years.

Most of the time, a change of plan is inconsequential. It may be hard in that moment, but the effect of the change is minimal. Occasionally, though, a change of plan can be transforming and have a lasting, life-altering impact.

This is the story of the joy of an unexpected breakthrough.

James is twenty. A little over five years ago, epilepsy arrived, adding to diversities and additional needs that include autism and learning difficulties. The onset of epilepsy was more profound than we imagined at the time, as it sparked overwhelming feelings of anxiety. For fourteen months, James was unable to go outside. A breakthrough helped him to return to some familiar places that held positive memories, but nowhere new.

Last week that changed.

We took James to his weekly craft session at the local community center, a routine that’s been in place since September. Due to James’ anxiety, he won’t leave the car when we get there, so the team brings the craft to him. Since September we’ve made collage pictures of dinosaurs, elephants, Christmas trees, lions, sharks, and hedgehogs. But in the car, not in the classroom.

Until last week. Until the breakthrough.

That day we parked near the entrance to the community center and used a new technique to coax James out of the car. We put a small folding table about three feet away from James’ door and put things James likes on it—iced gingerbread, crisps, his Minion nightlight, Play-Doh. Our hope was that James would step outside, collect something, and return to the car. We’ve had some positive results.

Last week James took us all by surprise.

Donna, a team member, passed the tray with the craft activity into the car, but there had been a mistake. She brought the craft from the week before. Donna and my wife Clare returned to the classroom to find a new craft activity. While we were waiting, I encouraged James to collect something from the table.

To my delight, he did so three times!

The third time, he stood by the table looking toward the entrance to the community center. I had to pull myself together and act fast. I slid out of the car on James’ side and gently encouraged him to walk to the entrance. Soon we were at the automatic doors. On we went into the foyer area where the sight of Clare helped him to move on again. Before we knew it, James was sitting at a table in the classroom. He sat at a table! He had a wonderful time creating a dragonfly picture. He was happy and engaged throughout. The challenge was getting him to stand up and return to the car an hour later. We were amazed, thrilled, proud of James, and slightly shocked. This was a mountain top. There will be valleys again.

But the view from that mountain top was magnificent!

Many families like ours have children who have been housebound for years. If that is you, let James’ story gives you hope. Hope that your child will be supported and have the joy of an unexpected breakthrough too. Hope of a mountain top moment sooner than you think.

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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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Off the Beaten Path

Off the Beaten Path

by | Feb 15, 2023 | Different Dream, Grief, Special Needs Parenting, Spiritual Support

Off the Beaten Path

Guest blogger Lisa Pelissier relates her struggles with her children’s differences and wonders why it is so hard to accept life just as it is.

I’m an experienced mom. I’ve been one for twenty-two years. I’m also experienced at parenting children with invisible disabilities. I’ve been that for twenty-two years as well. But most of the time I’m still floundering, wondering what to do, how to cope, and how to help my children move forward.

Mental illness and autism are similar in that they both remove a person from the expected path of life—high school, college, job, marriage, babies—and into something completely different. And they do this behind the scenes. To look at my children, it’s not apparent why they are struggling. They look fine.

But sometimes they just can’t do the thing.

Every time we come to a roadblock, a place where one of my children balks at progressing, I feel panicked. I don’t know what to do. I don’t know how to help. Do I let them play video games around the clock because it helps them feel better? Do I force them to go outside and play, knowing that they’ll come back in 20 minutes with a severe headache because it was more than they could do? Do I seek answers in medication? Therapy? Prayer? Special diets? Vitamins?

The truth is, there are not always answers. Whatever solution I come up with is not going to be the right one because I can’t fix this. I can’t. I can’t make my kids not be autistic. I can’t make them not be depressed. I can’t make them free from anxiety. I can’t make them think clearly when their minds just can’t do it.

Can medication help? Of course. Can therapy help? Certainly. And so can prayer, special diets, vitamins, and a host of other solutions that people apply to make things better. All of those things have been helpful.

So why do I still feel frantic every time one of my children goes off the rails?

1) Because I long for them to “do the thing”—I want their lives to follow that expected pattern. I want them to grow up and happily leave home for jobs and families of their own. I don’t want them to be on this alternate path where everything is strange and unknown to me.

2) Because I think I need to fix everything—Taking care of my children is my job. When there are things I can’t fix, I’ve obviously failed.

3) Because I hate to see them hurting—Mental illness is more than just a nontraditional path through life. It’s a nontraditional path through a bed of nails while drowning in an acid sea. Embracing their differences is hard to do when those differences are torture for my kids.

So what can I do? How can I approach my children’s disabilities without losing my mind?

I can respond to each of the above points in turn. Stop expecting them to “do the thing.” Stop trying to fix everything. Love them in the midst of their pain instead of panicking about it. But the bottom line is that I need to trust God. He is the One who allowed these disabilities and illnesses to beset my children, just as he allowed Paul a thorn in the flesh and allowed Job to lose his livelihood and family. He is their Creator, and He has a right to do with us all as He pleases. He is also our Redeemer, the lover of our souls, and our Father who gave His only Son to buy us back from Hell.

Shouldn’t that be enough?

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Photo by Mael BALLAND on Unsplash

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Lisa Pelissier lives in Oregon where she is a homeschooling mother of four (three with disabilities) 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 substitute teacher. 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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The Days Are Long, but the Years Are Short

The Days Are Long, but the Years Are Short

by | Feb 8, 2023 | Different Dream, Special Needs Parenting, Spiritual Support

The Days Are Long, but the Years Are Short

“The days are long, but the years are short.”

I repeat this phrase while I sit on the couch listening to my 7-year-old grandson read for a half hour every evening.

Each time he turns a page, he says something like, “Wow, Grammy! What do you think that is?” or “I wonder what will happen next?” He ignores the words on the page and launches into several winding, imaginative explanations.

My grandson really, really likes to talk. And use his imagination. As for the reading part? Not so much.

Which is why I eventually have to suggest, “Read the page and find out.”

He follows my suggestion—he can read more fluently than he believes—and finds out. Then he turns the page and begins the same process all over again.

To contain my impatience, I whisper to myself, “The days are long, but the years are short.”

One evening as we read, my mind wandered back to when our son was young and medically fragile. When complications arose—maybe he had a fever, refused to eat because of an oral aversion, or vomited his food because of an esophageal blockage—our days were very, very long.

Should we wait to see if he got better? Or worse?

Could we wait until morning to go to the doctor? Or call him right now?

Should we race to the emergency room in our car? Or should we call the ambulance?

Not only were the days long, but also the nights.

When our son turned four, I told my mother, “The years since he was born feel like a lifetime. Maybe it’s because we haven’t gotten a complete night of sleep since he was born.”

Mom smiled and said, “The days are long, but the years are short.”

To read the rest of The Days Are Long, but the Years Are Short, visit the Hope Anew website.

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 Sing!, the second book in the West River cozy mystery series, which features characters affected by disability, was released in November of 2022.

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My Baby with EA/TEF Changed My Life in 5 Big Ways

My Baby with EA/TEF Changed My Life in 5 Big Ways

by | Jan 31, 2023 | Different Dream, Encouragement, Special Needs Parenting

My Baby with EA/TEF Changed My Life in 5 Big Ways

My baby with EA/TEF changed my life in big ways, says guest blogger Karena Skibinski. The same is true for any parent of a child born with EA/TEF. It’s the ways our babies change us that varies. You’ll discover how Karena’s story is the same and what’s different from yours. For those who aren’t EA/TEF parents, Karena’s story will raise your awareness of this rare birth anomaly.

The day after my son Lincoln was born was the day I learned about Esophageal Atresia (EA)/Tracheoesophageal Fistula (TEF). We had some yellow flags during pregnancy that were being monitored but never did we envision an 87-day NICU stay. The night that he was born, Lincoln was transported to the NICU at Cincinnati Children’s Hospital. As it turned out, it’s one of the best in the nation with one of the best doctors in the world for Lincoln’s condition.

Those initial days were an indescribable fog. I spent hours scouring the internet, trying to find as much information as I could about his prognosis. The best way to summarize my findings is to say that each EA/TEF child’s journey is unique; the best thing to do is to take it one step at a time.

Lincoln is 15 months this month (January 2023), and that feels incredibly special. Every day deserves a celebration. I’d be lying if I said this journey was easy. This past year has been the most challenging of my life and one of the absolute best. It’s given me a different, more colorful perspective on life, one that I’m still trying to find the words to describe.

One thing I know is that my baby with EA/TEF changed my life in big ways. I’d like to share 5 of those ways with you here.

  1. I didn’t return to my full-time job once my maternity leave was over. Lincoln was still in the NICU once my 12-week leave passed by, and I couldn’t imagine having to go back to work while he was still in the hospital. Extending my leave wasn’t an easy option so I submitted my resignation. We had to adjust our priorities over this past year to make it work financially for our family, but I am incredibly lucky for my supportive partner and the means to be able to stay home. It’s been a busy year, full of follow ups with numerous doctors, therapy appointments, outpatient procedures (dilations), and trips to the ER. Despite the challenges, I am so grateful for being with him, day in and day out.
  1. I view self-care differently nowadays. Prior to becoming a stay-at-home mother, I enjoyed the typical self-care of an afternoon at a coffee shop, dinner out, or treating myself to some new moisturizer and makeup. Now my self-care looks different—an uninterrupted shower, a sunny afternoon walk with my boys, or a solo Target run for the essentials. I once thought that basic activities like taking a shower or running an errand should not be considered self-care for moms, and maybe that’s true; for now, in this season of my life, it can be.
  1. I’m familiar with the medical team and the role of each doctor in Lincoln’s plan of care. I’m much more confident with speaking up for and advocating for my baby. I’m comfortable with asking enough questions to get a good understanding of his plan of care. Parents are an integral part of the treatment team; we know our babies best. The confidence I’ve gained from this experience has spilled over into other areas of my life.
  1. I’ve adjusted my views on developmental milestones. Given my background as an occupational therapist (OT), I used to be anxious about Lincoln’s delays. I worried I wasn’t doing enough to get him “on track”. As time passed, I realized that life can be fully enjoyed regardless of Lincoln’s developmental timeline. One of my physical therapist friends reminded me that it’s not so much the age that’s so important, but the progression of skills. That perspective helped a lot.
  1. I find greater joy in the mundane. It’s important to note that a lot of things have remained comfortably the same. We experience the typical squabbles that any family with 1 and 3-year-olds have. We still love our nature walks, going to the park, story time, and cooking dinners together. I’m still growing my own OT practice.

My baby with EA/TEF changed my life in big ways. Our family is finally finding a good rhythm. This is our journey, and I wouldn’t change a thing.

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Karena Skibinski is a mother, occupational therapist, and host of the what about the mama? podcast. After taking a year off to be home with her children, Karena recently started facilitating baby-and-mom circles to provide education and support during the fourth trimester and beyond. When she’s not busy running around with her two toddlers Lenny (3) and Lincoln (15 months) or working, you can find her in the kitchen trying new recipes, going on long walks, or taking an afternoon nap. Through her work, her mission is to bring more awareness to EA/TEF and to provide reassurance to EA/TEF families that they aren’t alone.

Author Jolene Philo

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