One Month Ago Today

One Month Ago Today

by | Jan 25, 2021 | Different Dream, Encouragement

One Month Ago Today

One month ago today, we celebrated Christmas 2020. Those of us who didn’t live through the dark and seemingly endless days of the Great Depression or World War 2 found great comfort in the promises accompanying the birth of our Messiah.

The promise of hope.
The promise of light in the darkness.
The promise of a Savior with healing in his wings.

“He is the one,” we remembered, “who rules over wars and economic woes and pandemics. He is Emmanuel, who not only rules over us during challenging times, but also is with us throughout them.”

One month ago, those truths buoyed our souls and carried us into the new year. Into 2021 with its promises of vaccines and improved treatments and the slow but certain end of COVID-19. And yet here we are,

still separated from loved ones in residential care settings,
still losing people we care about to the coronavirus,
still attending virtual school,
still wearing masks,
still worshipping online,
still storing up hugs to share.

Those unaccustomed to long struggles or the sacrifices that accompany caring for someone with disabilities or special needs are reeling as the tentacles of the 2020 pandemic reach deeper into 2021 each day. They have no personal experience with self-denial, restricted movement, or limited choices. They have never needed to practice the disciplines of waiting long for God to speak, of finding good in hard places, or the cherishing of small things that reveal God’s grace. I see their hopelessness and fear, and I am grateful for the life given to me.

To read the rest of One Month Ago Today, visit the Key Ministry 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 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 website. 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 at Amazon.

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EA/TEF Awareness Month Is Celebrating 10 Years

EA/TEF Awareness Month Is Celebrating 10 Years

by | Jan 21, 2021 | Different Dream, Encouragement

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 website. 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 at Amazon.

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EA/TEF Repair Is One Chapter in Your Child’s Life

EA/TEF Repair Is One Chapter in Your Child’s Life

by | Jan 19, 2021 | Advocacy, Different Dream, Self-Care and Stress

EA/TEF Repair Is One Chapter in Your Child’s Life

EA/TEF repair is one chapter in your child’s life, says guest blogger Cori Welch. She wants you to take heart when the first chapter is where you are. She also shares what she wishes she’d known while living through the first chapter of her daughter’s life. 

Room C4B-41 was cramped, filled with at the least 10 medical professionals. The surgeon, a man I would later thank God for every night, stepped forward. 

“Reese is a kid that we see only once every 10 years or so.” 

He went on to explain to me that she was not only born with duodenal atresia and a single kidney, which had been discovered two weeks before she was born. She also had a birth defect combination called esophageal atresia and tracheoesophageal fistula type C. Luckily, since we knew about the “double bubble,” Reese was already near Nationwide Children’s Hospital ready for action. 

I remember thinking, “I don’t feel so lucky, Doc.”

Reese would go on to stay at the hospital for 114 days. She had 4 surgeries in that time with no major complications other than her gastric tube site expanding and morphine withdrawal. She will be 3 in April of 2021, and I can’t imagine life without her. She had her g-tube surgically closed in September 2020, which we are hoping is her final operation. 

Here’s what I know now that I wish I’d known in 2018:

  1. Breathe. 
  2. You didn’t do this to your child.
  3. Counseling is very beneficial.
  4. Learn as you go, not all at once. 
  5. “It’s a marathon, not a race.” – Dr. Thakkar
  6. Give it to God.

After Reese was born, we really counted on Ronald McDonald House Charities, neonatal intensive care unit (NICU) parent night, other NICU parents, family, and friends. A special memory is of the RMCH and 31 Bags throwing a baby shower for all the NICU moms. I gave birth 4 days before my own baby shower, so it meant the world to be able to feel normal. 2 final pieces of advice: Be your child’s advocate. Little ones don’t have a voice yet, so you have to speak for them. Also know that EA/TEF repair is one chapter in your child’s life and in your own. When it’s done, the next chapter is waiting, and it’s going to be amazing.

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Cori Welch is a part time CPhT, and “Mom Mom” to Reese Welch. Cori and her husband, Dustin, along with Reese, reside in southeastern Ohio. They enjoy walks in their historic town, movie nights, and the company of their cats, Pepper and Angus. Cori loves talking about Reese’s Journey and all the milestones she’s accomplished. 

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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?

by | Jan 14, 2021 | Different Dream, Encouragement, How-Tos

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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Connecting the EA/TEF Community: Indie’s Story

Connecting the EA/TEF Community: Indie’s Story

by | Jan 12, 2021 | Different Dream, Self-Care and Stress

Connecting the EA/TEF Community: Indie’s Story

Connecting the EA/TEF Community is one of the goals of EA/TEF Awareness Month. Doing so is the passion of Liz Eidelman, our first 2021 guest blogger. I’m delighted to introduce readers to her and to her delightfully adorable daughter, Indie.

I am so happy to be sharing Indie’s story in honor of EA/TEF Awareness Month. After a relatively uncomplicated pregnancy, our daughter was born on March 1st 2019 and immediately we knew something wasn’t right. It was a swift diagnosis and a whirlwind few days where we eagerly awaited her repair surgery and our ‘marching orders’ for moving forward. As first time parents, my husband Stephen and I were naturally terrified. I didn’t know what to expect for her future, and to a certain extent, I still feel that way sometimes. Indie stayed in the NICU for three weeks and was readmitted to the hospital two weeks later due to scar tissue causing a stricture at the repair site in her esophagus. This was a low point for us, without a doubt. The fear of the unknown was at an all-time high, wondering if constant trips to the hospital was our new normal… desperate to find answers and information about this rare condition that we hadn’t heard of. It was now occupying all of our lives.

My mother sent me an article about a little girl whose EA/TEF was being monitored by a specialized clinic at Columbia NY Presbyterian Hospital, right in our neck of the woods. This was the first child I had ever seen on the internet who was thriving despite her condition. My desire to connect with literally anyone who could relate had me throwing all caution to the wind and before I knew it, I had found this girl’s mom on Facebook and boldly sent her a message. When she responded, I broke down in tears. This was my first friend in the EA/TEF community. I’ll never forget the day we finally met her in person. 

Fast forward to 7 months old.  A laryngeal cleft was diagnosed, adding to the complexity of Indie’s EA/TEF. In the interim, we had joined the clinic in New York and I was actively using my blog’s platform and the power of social media to connect with many other EA/TEF families. In nearly two years of Indie’s life, I’ve come to realize that the first thing parents do after their child receives a diagnosis is to start googling… and apparently one of the first articles to come up is Indie’s birth story on my blog. You have no idea how many messages I have gotten from the NICU. Upwards of 50 moms and dads have reached out to me blindly, the same way that I had done mere months before. Suddenly I was connecting the EA/TEF community in ways I hadn’t anticipated.

Having these connections has made Indie’s journey an easier one for me as a new mom. Whether in the flesh or online-only, the friends we’ve made who share this unique bond have brought so much joy to our lives. We feel so blessed to know that Indie is thriving.

Navigating the complexities of her anatomic differences has been much easier than I thought it would be a few weeks after leaving the NICU. If you are raising a child with special needs, I cannot stress enough the importance of finding a friend or two (or fifty!)  in the same boat, even if it means you need to initiate the conversation and hope for the best – because in the end, I can assure you it will be worth your while. Watching these children grow and conquer is nothing short of amazing… and connecting the EA/TEF community is something I will continue to strive for – because a tight and vocal community will ultimately lead to more answers and solutions for these miraculous people.

“I get by with a little help from my friends.” – Joe Cocker

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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Liz Eidelman is a life + style blogger from New Jersey, who’s social media presence focuses on fun, affordable fashion and the experiences that go along with the outfits. After giving birth to a daughter with special needs, Liz has made an effort to use her digital voice to spread awareness to her daughter’s condition. Completing Liz’s family is her husband Stephen, and two dogs Percy and Zoey. Liz has appeared on the Rachael Ray Show as a Maternity Style Expert, and was previously a theatre actress performing in professional musicals around the country. Follow her @lizeidelman on instagram, or by subscribing to her blog, www.lizeidelman.com. 

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Fostering Communication and Connection Between Caregiving Parents

Fostering Communication and Connection Between Caregiving Parents

by | Jan 7, 2021 | Books and Resources, Different Dream, The 5 Love Languages® for Special Needs Families

Fostering Communication and Connection Between Caregiving Parents

Fostering communication and connection is crucial for parents of kids with special needs and disabilities. Several couples interviewed for Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities said they had to learn to tend to their relationship with one another first in order to meet their kids’ needs effectively.

As parents raising kids who require ongoing care, our attention and resources frequently go to our children first. Sometimes that can’t be helped. But there’s a tendency, as time goes on, to make a habit of paying attention to our kids before our spouses. According to the parents interviewed for Sharing Love Abundantly in Special Needs Families it doesn’t have to be that way. They said that the basic love language concepts are tools for fostering communication and connection for these 3 reasons:

  1. The love languages empower couples to make marriage a top priority.
  2. The love languages enhance communicate even in the thick of caregiving.
  3. The love languages make couples more intentional and observant.

To use the love languages, couples first need to learn one another’s love language. The easiest way to do so is by taking the free online quiz at 5lovelanguages.com. Once you know each other’s love language, you can start to speak it using ideas from Sharing Love Abundantly in Special Needs Families that are tailored for fostering communication and connection between caregiving parents. Here are a few to get you started.

Words of Affirmation. Compliment appearance, write and mail an old-fashioned letter, send encouraging texts or emails throughout the day.
Quality Time. Schedule coffee dates on the deck or by the fireplace, read a book out loud together, play a silly board game.
Gifts. Buy a single slice of dessert to share after the kids are in bed, buy small items at the dollar store, give a gift card to a favorite coffee shop.
Acts of Service. Gas up the car, get up early and pack your spouse’s lunch, grocery shop.
Physical Touch. Kiss and hug before going to work, exercise together, hold hands while you pray.

For more ideas like these, check out the book Sharing Love Abundantly in Special Needs Families. For ideas about how use the love languages with your kids who have disabilities and special needs, come back in February for the next post in this series.

Other articles in this series:

The Love Languages and Special Needs Families: A Good Combination

Basic Love Language Concepts to Ease Stress and Increase Joy in Caregiving Families

Threats to Caregiving Marriages and How To Fight Them 

Love Is a Child’s First Language

Determining the Love Language of a Child with Special Needs or a Disability 

Ways to Speak Words of Affirmation and Quality Time to Kids with Special Needs

Speaking Healthy Physical Touch to Kids with Special Needs

Using the Love Languages with Siblings of Kids with Special Needs and Disabilities 

Extended Family Members Can Use the Love Languages to Encourage Caregiving Parents

Communicating Your Child’s Love Language to Medical Professionals

Communicating Your Child’s Love Language to Educators 

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 website. 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 at Amazon.

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