EA/TEF Awareness Month Is Celebrating 10 Years

EA/TEF Awareness Month Is Celebrating 10 Years

EA/TEF Awareness Month Is Celebrating 10 Years

EA/TEF Awareness Month is celebrating 10 years of stories here at Different Dream. To mark the occasion, I’ve complied 1 post per year from 2011 through 2020. Your invited to join me for this walk through the past decade.

2011: The Birth of EA/TEF Awareness Month by its founder, Lori McGahan.

2012: Fascinating Stuff: The History of EA/TEF Treatment by Jolene Philo. This history focuses on early methods rather than on the huge strides made in the last 10 years. However, it encourages parents to do something that never becomes dated–thank the doctors and nurses who have touched their kids’ lives.

2013: Top 10 Signs You’re the Parent of an Adult Child with EA/TEF by Jolene Philo. It’s true. All true.

2014: EA/TEF Awareness Month 2014 is the only post on the topic. Hmmm. Did I forget to ask for guest bloggers or was it because our family was going through some hard stuff? I’m not sure. But this one post is a round up of several good articles from past years.

2015: Life Changes in a Moment by Ami Hays. Life changes at the moment of diagnosis and in countless tiny ways from day to day. Ami recounts several pivotal points she and her husband experienced while raising their daughter Abigail.

2016: So You’re a NICU Parent by Brianna Lennon. Brianna’s boy had just turned 1 when she wrote this post advising parents about how to be the moms and dads their kids need them to be.

2017: Our EA/TEF Adventure: A Journey with our Son by Maheen Tarver. You’ll be captivated by this family’s journey which takes them from one side of the country to the other in search of medical treatment for their little boy.

2018: My 4 Greatest EA/TEF Mom Fears by Jill Seaney. Jill speaks for every EA/TEF parent who hasn’t had the time our courage to give voice to the fears they live with every day. Your fears may be different than hers, but we’ve all got them.

2019: What It’s Like to Parent a Child with EA/TEF by Danielle Drummond. Danielle shares the good, the bad, the ugly, and the transcendent joy of parenting her son with EA/TEF.

2020: My First EA/TEF Memories by Mary Monahan. Mary is a 60+ year survivor of EA/TEF repair and she shares what she remembers about her early days. It’s an amazing story!

There’s not room to share every story from the past 10 years, but you can find more by typing “EA/TEF” in the search bar at the top of the page. When you’re done exploring, leave a comment about your favorite and why. It’s always great to hear from other EA/TEF  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 the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream websiteSharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon.

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Is It Easier or Worse To Be an EA/TEF Parent in the Time of COVID?

Is It Easier or Worse To Be an EA/TEF Parent in the Time of COVID?

Is It Easier or Worse To Be an EA/TEF Parent in the Time of COVID?

Is it easier or worse to be an EA/TEF parent in the time of COVID?  Guest blogger and EA/TEF mom Nanette Lerner outlines her answer to the question and encourages other parents in today’s post.

If you’re the parent of an EA/TEF kid, chances are you were calculating the risks of germy situations way, way before COVID-19 entered the picture. These days, the rest of the world seems to be catching up to our germaphobia.  Because it’s clear that everyone’s lives depend on it.

Back when our TEF kid was little and every cold seemed to turn into a much bigger respiratory event, germs were always on my mind.  If I saw a kid on the playground with the slightest runny nose, we moved. Ball pits were evil harbingers of unknown viruses. Jumpy houses—particularly the kind that zipped shut—caused major anxiety, since there was no telling if our TEF kid was being coughed or sneezed on by other kids. If you’ve ever sat in the middle of the night with your hand on your kid’s chest to count your kid’s respiratory rate (without a pulse oximeter) determining whether or not you should wrap him up and head to the ER, then you understand why we were so paranoid.

Flash forward to January 2021 when everyone knows what a pulse oximeter is, so much so that they are impossible to find in your local pharmacy. Hand sanitizer is so much a part of the norm that you literally can’t find it in most stores. Lysol and Clorox wipes are worth more than gold.

So is it easier or worse to be an EA/TEF parent in the time of COVID when everyone is so much more germ conscious?

The Good News

In these times, no one is going to try to touch your EA/TEF baby’s hand. Or stick their face into his stroller and breathe all over your kid. Since everyone is mostly staying home right now, there is less opportunity for social mingling and germ mingling, too.

The Bad News

We’re in the midst of a global pandemic involving a disease that includes respiratory symptoms. Everyone is highly sensitive to anyone coughing. But the sound of an EA/TEF kids cough reverberates like thunder and gets evil looks anywhere you go. That’s only going to get worse, though nowadays, your kid is coughing while wearing a mask

The Emergency Room News

We frequently had to take our little guy to the ER when he was little; so much so that we kept a “go bag” packed and ready since he was often admitted. The emergency room question mark is something that all parents (even non-TEF parents) are battling right now, since no one ever really wants to go—but these days, even less so. For one thing, you may not want to enter an ER and expose your little one to potential germs unless it is absolutely necessary.  And you don’t want to take up a spot that could go to a COVID patient in desperate need of attention.

There’s also the question of what happens if our TEF kids get COVID.  We don’t know if it will be worse for them, and we don’t want to find out.  

So Is It Easier or Worse To Be an EA/TEF Parent in the Time of COVID?

If there is any silver lining at all to COVID—and there isn’t much—it’s that the world will finally be more conscious of germs than they ever were before. As EA/TEF families, we have lots of experience with social distancing already, so we keep practicing that. 

I hope that people continue to wash hands religiously, use hand sanitizer, and are aware of how they are feeling before they go anywhere. I don’t want everyone to become germ freaks. But I do appreciate people who take a moment to consider how their health can greatly impact the health of others.

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 inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

Nanette Lerner

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Nanette Lerner writes commercials, social posts, print ads and young adult fiction, sometimes simultaneously.  She lives in New Jersey with her husband, kids and fluffy dog.

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Ten Moments in a Caregiving Life Well-Lived

Ten Moments in a Caregiving Life Well-Lived

Ten Moments in a Caregiving Life Well-Lived

Ten moments in a life caregiving well-lived is a practice today’s guest blogger, Laura Spiegel is implementing this holiday season. May her ideas cause you to hunt for your own ten moments throughout December and beyond. 

As the holiday season nears, I’m finding myself in moments of reflection. This year has highlighted the fragility of life. The impermanence of it all. It’s also reminded me that a life well-lived isn’t always momentous. It’s a smattering of small moments that together weave a tapestry of love, laughter, joy, struggle, and yes, even loss. 

For parents of children with special health care needs, it can be especially important–and especially difficult–to nurture the blessings that come alongside the battles. As a mother of a young child who lives with cystic fibrosis, I know that my mind spins more readily toward what’s not going well–or what could one day not go well–rather than focusing on the here and now.

To combat that, I’m working on savoring the small things that bring joy to my family and to me. In that spirit, here are ten simple moments from last week that have infused our lives with, well, life. 

  1. My daughter stuffs the Christmas cards, her face a picture of glee. She reads each name with care and is bewildered when her stamps stick sideways. It’s not a hassle for her; it’s a delight.
  2. We read my mom’s advent book as we light the purple candles before dinner. It’s covered in grease stains, and my kids pride themselves on the little they’ve memorized. Each night, this reminds me of home.
  3. We look at a photo album from my mom’s childhood. There she is with her brothers, on the roof of the house like there’s no tomorrow. (And no helicopter parents). Her grin is as wide as the sky. 
  4. Our potted plants are inside for the winter. Maude, the hibiscus, and Doris, the canna lily, are doing well. Every morning, my husband marvels at the pink blooms. They last but a day before falling to the ground. But their hint of life helps keep the Indiana gray at bay.
  5. Speaking of Maude and Doris, did I tell you that my appliances have names? Or rather, the best ones do. There’s Ophelia the oil lamp, Olive the vacuum, and my personal favorite: Mildred, the cell phone cleaner. I find that a simple “Thank you, Mildred!” knocks the cleanliness up a notch.
  6. A package of treats arrives from the children’s hospital. They want to thank their volunteers for their service. We have caramel/cheesy corn for breakfast, lunch, and dinner.
  7. I meet old friends on the back porch. We wear Golden Girls masks as a tribute to our favorite teenage pastime. We trade memories and drink wine through straws. Finding a way to sip while masked? What could be better than that?
  8. My daughter’s best friend drops off a note to thank her for being a friend. These seven-year-olds have bigger hearts than most anyone I know. Their unabashed love and appreciation for each other is a gift. 
  9. A new family member arrives. Leo the kitty reminds me of my favorite girlhood feline. He likes to sit on my son’s lap and lick his arm. They are in love.
  10. The tree twinkles with shiny lights, but my eye is drawn to the homemade ornaments. The handprints of my kids at five months and three. The painted reindeer from preschool. The crocheted dog and cat from my grandma. Our tree reminds me of love, warmth, and life. And if my husband has his way, it will stay up well into 2021. 

This season can be tough, especially for those of us who have lost loved ones or are separated from those we love. From my family to yours, I wish you health and safety this holiday season. And I wish you ten moments in a caregiving life that bring a smile to your face and remind you, in the end, of a life well-lived. 

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 inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Laura Spiegel spent 12 years at the world’s largest biotech company, partnering with professionals and care teams to help people with special needs and disabilities lead full and happy lives. In 2013 her daughter was diagnosed with cystic fibrosis. Laura now hosts Paint Her in Color, a website that offers emotional support to parents of children with special medical, developmental, or behavioral health care needs. When she isn’t reading, writing, or soaking up time with her husband and kids, Laura can be reached at Paint Her in Color, by email at laura@paintherincolor.com, and on Facebook and Twitter.

Author Jolene Philo

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The Dread of the Unknown

The Dread of the Unknown

The Dread of the Unknown

The dread of the unknown grabbed hold of our grandson when he was three. He was playing in the living room when a sun came out from behind a cloud, striping the floor with light and dark.

“Grammy, what’s that?” he asked, pointing at the dark bit.

“It’s called a shadow.”

“What’s a shad-e-ow?” He got the “shad” part right, but pronounced the “ow” like the end of radio.

“It’s what objects and people make when they stand in the sun. The light can’t get through so it forms a dark outline–a shadow.”

“I don’t like shad-e-ows. Make them go away.”

In that moment, a fear was born.

No matter what we said.
No matter that we showed him how shadows come and go without harm.
No matter how often we showed him it didn’t hurt to stomp on someone’s shadow.
No matter how many times we grabbed at shadows and couldn’t catch them.

His fear of shadows was real. It was debilitating. It ruled his days for almost a year. And then it slipped away, as silent and insubstantial as a shad-e-ow.

My grandson’s dread of the unknown wasn’t much different than what I experienced after our medically fragile baby was born. I spent the first year of his life in the grips of fear.

What if he died? He didn’t.
What if he got sick again? He did get sick. A lot. And then he got better.
What if I couldn’t pump enough breast milk for him? Somehow, there was always enough.

No matter the good things that happened.
No matter how often my fears didn’t come true.
No matter how many times our baby fought off illness.
No matter how many times we had just enough and no more.
My fear was real. It was debilitating. It ruled my days for my baby’s first year of life. While my grandson’s fear slipped away almost unnoticed, my fear for my baby departed kicking and screaming, lurking in corners eager for a chance to return.

The dread of the unknown, I now realize, is part and parcel of parenting a child with special needs and disabilities. The decisions, the diagnoses, the outcomes, the timelines are different for our kids. Our parenting journey contains many unknowns. It can be hard. It can also be unsettling. But we can’t let the dread of the unknown magnify the hard bits of parenting our children and block out the joy and delight of their lives. Instead we must understand the distinction between fear and faith.

Fear is the dread of things unknown, the terror of things unseen.

Faith is the assurance of things hoped for, the conviction of things unseen. (Hebrews 11:1)

Fear is grounded in what we don’t know about parenting our kids.
Faith is grounded in the hope of one wants to be known.

The dread of the unknown may be part and parcel of raising our kids, but we can loosen its grip by looking to the Savior who came to earth to be seen. The one who lives in the light and not the shadows. The one who loves you and your child with an everlasting love that casts out fear. The one who is ever and always the hope of all who seek to know him.

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 the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream websiteSharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon.

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Building Is a Slow Process

Building Is a Slow Process

Building Is a Slow Process

Building is a slow process.

God has been hammering that truth home since we signed the loan papers for a construction project which will turn our one family dwelling into a duplex.

“When will the addition be completed?” the loan officer asked as we signed the papers in April of 2020. At the drive up window. Because of the pandemic shutdown.

“We’re hoping for September.” My husband spoke into the microphone, and I nodded in agreement.

Silly us.

When the projected completion date arrived, the only work that had been done were the footings and the foundation walls. Despite having gutted and remodeled the kitchen, dining room, and living room of our previous home, my husband and I had forgotten that building is a slow process. So far during this remodel and addition, illness—the excavator’s emergency appendectomy and the truss builder’s bout with COVID— have contributed to the delays, as did a widespread, destructive windstorm that shut down parts of our state for weeks and drove up lumber prices.

Sigh.

To us, this project feels like it’s going nowhere. My husband and I suspect it may not be done before winter, and we’re requesting a building permit extension. We think it will be granted because the city inspectors know that building is a slow process. I was just coming to grips with our adjusted timeline when our church began a new sermon series it began as it reopened its doors after the pandemic shutdown.

To read the rest of Building Is a Slow Process 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 inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream websiteSharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon.

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I Want to Live with the Confidence of a Five-Year-Old

I Want to Live with the Confidence of a Five-Year-Old

I Want to Live with the Confidence of a Five-Year-Old

I want to live with the confidence of a five-year-old.

That thought flitted through my mind while my grandson hauled out his art supplies the day before Halloween.

“I’m turning the kitchen into a haunted house because I just learned how to draw cats,“ he informed me as held up a picture. “I can draw them really good.”

The picture above this post is one his cats. At first glance, I thought it was a sheep.

He was so confident in his drawing ability, he took a break from creating masterpieces and gave his little sister a tutorial in how to make them.

She was awestruck by his skill. “Your pictures are beautiful,” she breathed.

I was awestruck by his confidence. “How did he develop such self-assurance?” I wondered.

He drew picture after picture, blazing through paper and tape as he hung them from every available space. I could see how the love his parents speak into him every day is building him up.

Tell us how that made you feel.

We love you because you are our little boy.

You’re a good problem solver. You keep trying until you figure it out.

Look at all the things you’ve learned to do.

We are so glad to be your parents.

Even when my grandson is at his worst, and his parents hold him accountable for his behavior, they cover him with kindness and love.

Click here to read the rest of I Want to Live with the Confidence of a Five-Year-Old at 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 inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream websiteSharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon.

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