Top Ten Perks of Raising a Child with Disabilities

Top Ten Perks of Raising a Child with Disabilities

Top Ten Perks of Raising a Child with Disabilities

Raising kids with disabilities comes with its own set of challenges and reasons to be grateful. Because this is EA/TEF Awareness Month and our son was born with EA/TEF, my top ten perks of raising a child with disabilities will be slanted in that direction.

Years of experience have shown me that disability parents, whatever their child’s disability might be, have much in common. I hope these perks resonate with you, make you laugh, make you cry, and increase your gratitude.

#1: My Child Was Made by God in His Image

When I grieve the loss of my dreams for my child—a true grief to work through—the knowledge that he is exactly who God made him is a comfort for which I am always grateful.

#2: My Vocabulary Expanded

As an educator, I consider expanding my vocabulary to be a positive development. So many words entered my vocabulary after our son was born—barium swallow, GI specialist, stuckies, feeding tube, Nissen fundoplication, dilation, and more. How can I not be grateful for them?

#3: I Consider the Ability to Swallow Marvelous

Until our son was born, I thought swallowing of a normal bodily function. After he was born, I saw it as the marvel it is. And when his swallowing challenges diminished, my gratitude knew no bounds.

#4: I Appreciate Medical Advances

The EA/TEF surgery protocols have changed drastically since we became parents in 1982. From the introduction of anesthesia during newborn surgery to dainty button-feeding tubes and much more, I am grateful for today’s newborns being treated more humanely and effectively than ever before.

To read the rest of the Top Ten Perks of Raising a Child 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.

Image via Jake Muller at DisabilityisBeautiful.com

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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Dance!, the third book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2023.

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An EA/TEF Update: Oliver’s Story

An EA/TEF Update: Oliver’s Story

An EA/TEF Update: Oliver’s Story

An EA/TEF update on families who told their stories in previous EA/TEF Awareness Months means a lot to our community. Today, busy mom and guest blogger, Kelly Simpson is back with an update on her son Oliver, whom readers met during EA/TEF Awareness Month, 2023. I hope you enjoy hearing about his progress in the past year as much as I did.

Oliver’s Story

  • Normal ultrasounds and no issues caught or seen during pregnancy.
  • Born at 39 weeks.
  • C-section due to coning.
  • Born unable to swallow: OBGYN and Oliver’s doctor on call decided to have Oliver transferred to Norton’s Children’s Hospital in Kentucky.
  • Diagnosed with Tracheoesophageal Fistula (EA/TEF) Type C.
  • EA/TEF repair two days after birth.
  • 19-day stay in the NICU.

Life after the NICU:

  • At 6 weeks Oliver started to have problems swallowing milk. His pediatrician suggested an Ear, Nose, and Throat doctor. A swallow test confirmed narrowing of the esophagus. Esophageal dilation (stretching of the esophagus) at 6 weeks, 8 weeks, and again at 12 weeks.
  • At 6 weeks he was also diagnosed with tracheomalacia or floppy trachea, which leads to extra movement with crying, laughing, or coughing. Most kids sound like a goose, and cough is deep sounding like a bark.
  • At 4 months, he was escorted to Norton’s Children for respiratory distress. He was placed in the ICU for a week with aid from a ventilator.
  • At 6 months old, he had a second ICU stay for a week for respiratory distress, aid from a ventilator.
  • At 10 months old, he had a 4-day ICU stay for respiratory distress.
  • Received an airway clearance vest to help keep his airway clear.
  • Age 3 included multiple cases of pneumonia
  • Age 4 saw multiple cases of pneumonia

An EA/TEF update since last year’s story:

  • Oliver is almost 5 years old.
  • He is healthy and in the 98th percentile for both weight and height. What a blessing!
  • He has not needed an esophageal dilation since he was 12 weeks old.
  • Eats and drinks normally with no restrictions.
  • Does require a little extra water with meals just in case.
  • Loves to run!
  • Starts Kindergarten in the Fall!

What a wonderful EA/TEF update!

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Kelly has lived her whole life in Kentucky. She and her husband, Jeremy, have a four-year-old son, who, born during a deployment, was diagnosed with tracheoesophageal fistula. She has always felt a calling to serve others and is living the dream as an Army wife, middle school teacher, and now, as an encourager to those who are living a dream different than they had planned.

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Lessons from First Year EA/TEF Parents

Lessons from First Year EA/TEF Parents

Lessons from First Year EA/TEF Parents

Today’s lessons from first year EA/TEF parents come from guest bloggers Katharine and Jake. As is often the case, their advice will benefit more than the EA/TEF crowd. It will resonate with parents of children with a wide variety of disabilities. Perhaps it will resonate with you.

Our family’s story began at our son’s 20-week anatomy ultrasound when our son Mason was diagnosed with congenital hydrocephalus. This condition causes an abnormal buildup of cerebrospinal fluid in the brain causing a wide range of developmental delays. At birth, he was unexpectedly diagnosed with another birth defect where the esophagus and stomach are not properly connected, called tracheoesophageal fistula and esophageal atresia (TEF/EA). He spent 6 weeks in the NICU, as he needed multiple surgeries to repair and manage these diagnoses.

It is hard to believe that we are approaching Mason’s first birthday. We have adjusted to a busy schedule over the past year. We attend regular developmental therapy appointments and see many medical specialists, both in our local area and over 2 hours away. Our son is delayed in meeting most developmental milestones. However, he is resilient and makes progress each day. There have been some bumps along the road, including unexpected hospital stays and new challenges, but seeing his bright smile every morning is our greatest motivation.

These are four lessons our son has taught us in his first year:

#1: Celebrate the “inchstones.”

It can feel discouraging to focus on big milestones, like head control, sitting independently, and walking. It is difficult to do other things in our life, like housework or hobbies we enjoy, because it feels like he needs our attention all the time if he’s going to make progress. We remind ourselves that he is developing at his own pace. Instead of the milestones, we celebrate each small incremental stride our son makes while working on those bigger goals.

#2: We are his greatest advocates.

While we are surrounded by a great medical team, we know our son best. At each appointment, we learn all that we can about his condition and how each provider can help our son. We constantly ask questions and give our opinions. Ultimately, we come to a collective decision with our son’s providers to make the best medical decisions for him.

#3: Try it again, try it differently.

Our son came home feeding mostly from a gastrostomy tube (G tube). We tried changing so many things and thinking outside the box to improve his ability to drink from a bottle. Eventually, with the right combination at the right time, he succeeded with the bottle at four months old and now enjoys purees. Mason is always changing. We constantly reevaluate what he needs to succeed and are not afraid to return to things that previously failed.

#4: Remember all the good.

This is hard. Some days can be very hard. The stress and the difficulty of this experience can be overwhelming, especially when you are comparing it to what other parents experience or your own expectations. But no matter the added challenges, the smiles, laughs, and love are still there, perhaps even more so. Embrace it all, most of all your lessons as first year EA/TEF parents.

Jake, Mason, and Katharine Kaczmarowski

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.

Image courtesy of Katharine and Jake

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Katharine and Jake are young professionals living in Minnesota with their son, Mason. He was born in early 2023 with congenital hydrocephalus and TEF/EA (associated with VACTERL). He also has a chromosome 6q26-q27 deletion. They have been married for two and a half years and each day strive to parent as a team. As a family, they enjoy strolling along Lake Superior’s shore with their dog.

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EA/TEF Awareness Month 2024

EA/TEF Awareness Month 2024

EA/TEF Awareness Month 2024

EA/TEF Awareness Month, 2024 is here. Once again Different Dream is raising awareness by featuring stories written by or about families impacted by EA/TEF. Some parents are telling their child’s story for the first time. Others are providing updates on kids featured here in the past. And then there’s me, the parent of a son born with EA/TEF in 1982, who will wrap up the month with a post about our family’s experience.

Different Dream is a blog for parents raising kids with a variety of disabilities and special needs, so not all of our readers are familiar with EA/TEF. If that’s the case for you, here’s a quick summary.

EA/TEF is short for esophageal atresia with or without tracheoesophageal fistula. No wonder it goes by its initials, right? It’s a congenital anomaly in which the esophagus is not a completely open tube. It has a number of variations which are described and illustrated at this link.

The condition is fatal unless newborns receive immediate treatment, which requires surgery and a NICU stay. Each child’s treatment and recovery are unique, as you will see when you read this month’s posts.

Different Dream devotes all of January to raising awareness for many reasons, the most important being to reach families dealing with this birth anomaly so they feel supported. My hope is that when new EA/TEF parents search the internet, they’ll find this website and be encouraged by the stories shared here. I also hope that whether or not your child lives with EA/TEF, these stories will encourage you and equip you to support parents and kids who do.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email.

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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Dance!, the third book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2023.

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I Didn’t Want to Learn Hard Caregiving Lessons, but Now I’m Grateful

I Didn’t Want to Learn Hard Caregiving Lessons, but Now I’m Grateful

I Didn’t Want to Learn Hard Caregiving Lessons, but Now I’m Grateful

I didn’t want to learn hard caregiving lessons in 2023. Mainly because I’m a big fan of easy. Hard? Not so much. Yet here I am waiting for 2023 to end—believe me, I’m ready to put it behind me—and at the same time embracing the hard lessons I’m about to share with you as precious gifts.

My entire life, literally since I was two years old, has revolved around caregiving. Therefore I assumed I was prepared for the challenges our family faced after my mother was diagnosed with dementia in 2008. That assumption proved correct until January of 2023 when Mom entered hospice care. Over the six months leading to her departure from this earth, advocating for her was all encompassing. I didn’t want, nor did I have time to learn hard caregiving lessons. With each passing day I became more grateful for how they drew and are still drawing me closer to God. And so, I want to share them with you.

  1. The why of caregiver grief is the same, though the who and what may be different. All grief is a response to loss. Young parents grieve the loss of children gone too soon or the losses related to their child’s disability. Growing children grieve what they don’t experience because their parents live with disabilities or because their parents were lost to disease. Adult children grieve as their elderly parents lose their independence, personality, and function. The universality of loss among caregivers can make us more empathetic toward all caregivers.

To read the rest of I Didn’t Want to Learn Hard Caregiving Lessons, 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 several books for the caregiving community. She speaks at parenting and special needs conferences around the country. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Dance!, the third book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2023.

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An Unexpected Christmas Gift

An Unexpected Christmas Gift

An Unexpected Christmas Gift

An unexpected Christmas gift was given to guest blogger Sandy Ramsey-Trayvick and her family more than 2 decades ago. Today she shares her reaction to the gift shortly after it was given and how she views it now.

My son Myles got sick on December 10, 1999. My family had attended a Christmas party four days before. I have memories and pictures from that party of my son giggling with excitement as he raced back and forth across the room, practicing his newly developing walking skills. He was healthy and happy. Our family was excited and looking forward to enjoying the holiday season. But our little boy suddenly became very ill. Instead of planning for Christmas, my husband and I found ourselves in the emergency room receiving the news that our 13-month-old had contracted strep pneumococcal meningitis and was in a coma.

I remember sitting next to his hospital bed in the pediatric intensive care unit signing the photo Christmas cards that featured my three little ones all dressed up in their holiday best. Sending photo cards of my kids to family and friends had become one of my holiday traditions. This particular year, as I signed each card, I prayed for God to awaken my baby boy in time for Christmas. I pleaded with the Lord but His answer was no. The Christmas of 1999 was the saddest I’ve experienced.

I asked the Lord for just one gift and didn’t receive it.

There have been a lot of Christmases since then and, thankfully, my son has been awake and at home for all of them. Through that long illness and the special needs journey that has followed, the Lord has blessed our family with gifts I hadn’t thought to ask for as I sat in that hospital room all those years ago.

God began revealing His first gift to us shortly after Myles was hospitalized.

Prior to that long hospital stay, my husband and I held inaccurate ideas about God and His ways. In the midst of some of our most difficult circumstances with Myles, God gave us the gift of truly getting to know Him. We experienced Him as Teacher, Comforter, Protector, Advocate, and Waymaker. Prior to that hospital experience, we had heard about God and His ways, but He gave us the gift of knowing and seeing Him for ourselves. In the almost 25 years since my son’s initial illness, we’ve continued to know God more intimately as we’ve walked with Him through both joyful and painful experiences.

Through this special needs journey, the Lord has also given me the gift of knowing my true identity.

Becoming a special needs mom challenged all the ways I saw myself. My old chosen identity had been tied primarily to my performance and accomplishments—but it didn’t fit with my new life as a special needs mom. As I struggled for a sense of significance in this role, the Lord walked me through His Word to teach me who He says I am. He taught me that my significance—my worth and value—have always been in Christ. I didn’t need to choose an identity because He had already chosen one for me, one that would remain unchanged by new roles or unforeseen circumstances.

As I reflect back over the past two decades and more, I’m relishing an unexpected Christmas gift of remembrance—the ability to look back and recall all that God has done in and through my family’s special needs life. He has continued to give.

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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Sandy and her husband are parents to three young adult children. Their son was diagnosed with multiple disabilities 24 years ago after a devastating illness as a toddler. Following her son’s diagnosis, Sandy quit her job to become his full-time caregiver and advocate.

Sandy is currently a Certified Professional Coach. Her focus is to empower special needs parents who are feeling weary by helping them to renew their hope and strength and reactivate their joy.

You can learn more about Sandy and her work at www.UNDisabledLIVES.org. You can also reach her at Sandy@UNDisabledLIVES.org.

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