5 Powerful Ways Special Needs Parents Impact the World

5 Powerful Ways Special Needs Parents Impact the World

by | Feb 19, 2020 | Different Dream, Encouragement

5 Powerful Ways Special Needs Parents Impact the World

5 powerful ways special needs parents impact the world may sound hyperbolic to people looking in on the disability community. But I’ve been part of a caregiving family all my life, and I assure you that special needs parents impact the world every single day. We just don’t realize it. In fact, we tend to discount the importance of what we do. To see if that’s true for you, read through the following statements.

  • When someone asks about my job, I say things like “I’m just a mom” and “I’m just a dad.”
  • I sometimes think other people contribute more to society than I do.
  • I sometimes think my life is too ordinary to make a difference.
  • I rarely ask our physician questions about treatment options for my child because the doctor is the expert.
  • I don’t say much at parent-teacher conferences or IEP meetings, because the teachers and administrators know more about education than I do.
  • I care for my child, but that’s just what parents do. It’s no big deal.

If 1 or more of the above statements describes you at least once in a while, you are selling yourself short as a special needs parents. As Bob Newhart said in one of the best comedy sketches ever, you need to stop it because your work caring for a child with special needs is making a huge difference. In fact, here are 5 powerful ways special needs parents impact the world.

To read the rest of this post, please click here to visit the Hope Anew website.

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

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Ugly Sweater Cookie Contests and EA/TEF Memories

Ugly Sweater Cookie Contests and EA/TEF Memories

by | Feb 4, 2020 | Different Dream, Encouragement, Holidays

Ugly Sweater Cookie Contests and EA/TEF Memories

Ugly sweater cookie contests and EA/TEF memories. What could they possible have in common? The answer is plenty, thanks to a recent Facebook post by a dear friend named Barb. She posted a picture about the ugly sweater cookie contest she hosted during her family’s 2019 Christmas gathering and asked Facebook friends to vote for the ugliest.*

Of course, I thought, Barb held an ugly sweater cookie contest at Christmas. That sounds just like her.

We met Barb and her young family way back when, when we lived in a remote town of 92 people in the northwest corner of South Dakota. Her 2 oldest daughters were in my country school classroom, and Barb created beautiful birthday cakes for them each year. Word got out, and since our town was at least 60 miles from the nearest bakery, she was soon creating cakes for all sorts of occasions.

She even created a cake for our EA/TEF baby’s first birthday in 1983. The cake featured a baby-with-a-feeding-tube-and-a-string-coming-out-of-his-mouth. Those who are used to 2020 EA/TEF technology may not be familiar with the 1982 version. Our baby’s feeding tube was a honking, huge Foley balloon catheter. The string went into his mouth, down his esophagus (placed there during a very dicey surgery), into his stomach, and out the feeding tube hole. The two ends were tied in a knot that was untied so dilation tubes could be attached to it when his repair scar needed to be stretched. Our baby endured this process, without anesthesia, about 2 dozen times. Thankfully, modern day dilations are less frequent, more effective, and much more humane.

To read the rest of this post, visit Different Dream’s sister blog, Down the Gravel Road.

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

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The Thing About EA/TEF People Don’t Mention

The Thing About EA/TEF People Don’t Mention

by | Jan 30, 2020 | Different Dream, Encouragement

The Thing About EA/TEF People Don’t Mention

The thing about EA/TEF that most people don’t mention isn’t just one thing. It’s many things as today’s guest blogger Amanda Alcamo explains. What’s the one thing you would add to what she says? Share your one thing in the comment box below.

The thing about EA/TEF that most people don’t mention is the utter shock that comes over you when the surgeon breaks the news. We had no idea that there was anything wrong with our little one until the day after he was born, when I finally got to hold him for the first time, I noticed a small tube coming from his mouth. I recall not being too focused on that as much as the fact of this blessing that I was able to hold in my arms.

It wasn’t until hours later when the surgeon came into my room and explained what he was going to do. “Your son was born with what we call tracheal esophageal fistula with an esophageal atresia. Basically, his esophagus only grew the top half and then was capped off while the bottom half actually grew into this trachea.”

My response was, “Excuse me what?”

As he explained it again and drew a diagram all I could think about was How did no one notice this before he was born? and When can I take him home?

Our surgeon said there was no easy way to determine that this is something babies have prior to birth and that it’s very rare. He was also extremely confident that our baby would go home in about 2 weeks.

The next morning we all rolled down to the surgery wing of the hospital. I leaned over my sweet 2-day-old baby’s face and whispered, “Today is the day the Lord has made, I will rejoice and be glad in it.” (Psalm 118:24)

Nearly 3 hours later we were able to see our sweet boy. His surgery was successful, and we took him home just over 2 weeks later. But the fear and unknown has continued for years.

Life with an EA/TEF kiddo is different, challenging, and sometimes scary. The dozens of time we have to explain his situation to Drs or teachers can be exhausting. But something sticks in my mind every time I begin to doubt that we endure this for a purpose. Each person we explain this to may not have a personal relationship with Jesus yet. We do. And we know that the God created Isaac formed our son in my womb. He gave our baby life so that we have opportunities to share about God’s perfect love, His grace, and His strength when we are weary.

This past summer we learned of another defect with our son’s bronchial tubes. He endured another long surgery to have his left upper lobe removed. Even then, exhausted, tested, and weary, I found myself dozing off in the waiting room during the procedure. I reminded myself of Psalm 118:24 again.

“Today is the day the Lord has made, I will rejoice and be glad in it.” 

It is, and He did.
I did, and I am.

Our son is a blessing and a warrior. I count it all as a blessing now that we get to endure this journey in life.  Through our son, we are reminded how precious it really is and how loved we really are. That’s the thing about EA/TEF people don’t mention.

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I am a working mother to Isaac, our sweet 3-yearold EA/TEF blessing and wife to my amazing husband Jacob. When Isaac was born in 2016 we had no idea what our life would be like raising a child with such a condition but with every illness we have tried to endure keeping Christ in the forefront. Raising a child with such needs and facing the unknown led me down a dark path of loneliness and blaming myself. Through a therapist and my family I came to terms with the reality the PTSD for parents of kids with chronic conditions. I continue to share the good news of Christ and His hope, joy, and freedom with all who hear our story.

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20/20 Hindsight about our Child with Special Needs

20/20 Hindsight about our Child with Special Needs

by | Jan 27, 2020 | Different Dream, Encouragement, Spiritual Support

20/20 Hindsight about our Child with Special Needs

20/20 hindsight about our child with special needs was a long time coming.

When our son was born in 1982, the doctor said he had a tracheoesophageal fistula TEF, now known as esophageal atresia (EA) or EA/TEF.

We were young.
We were first time parents.
We were expecting a healthy baby.
We were blinded by fear after our newborn’s life-threatening diagnosis.

In those early days, we couldn’t imagine having 20/20 hindsight about our child with special needs. 10 years later, we had an inkling that hindsight might develop. 20 years after that, we sensed it was developing. Even so, we were surprised that it took until 2020 for our 20/20 hindsight to come into sharp focus.

It was worth the wait.

Nearly 38 years after the birth of our beautiful baby boy, hindsight reveals how his special needs diagnosis transformed us from a young, scared, and unsure couple into braver, confident parents. Here are 5 of the many means God used to complete the transition.

#1: Bad Things

The day our child was born, we discovered that bad things do happen. In the years to follow, we discovered that we and our child could survive and thrive despite

multiple surgeries, procedures, and tests for our son,
years of sleep deprivation for us,
mental health issues for all,
and huge medical bills.

Despite all that and more, we are still here. And we are thriving.

#2: Surgeons

In the years after our son’s birth, we learned that surgeons are a blessing from God, and surgeons who saw our son as a person and not a condition were a double blessing.

To read the rest of this post, visit Key Ministry’s blog for parents raising kids with special needs.

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

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Our Unexpected but Blessed EA/TEF Journey: Year 3

Our Unexpected but Blessed EA/TEF Journey: Year 3

by | Jan 23, 2020 | Different Dream, Encouragement

Our Unexpected but Blessed EA/TEF Journey: Year 3

Our unexpected but blessed EA/TEF journey. That’s how guest blogger Kristen Horton views raising her son with EA/TEF, and most parents raising kids with this birth condition would agree. Kristen first wrote about her family’s journey before her son Christopher was a year old. A year later, she was back with an update and now she’s here to tell us how their family is negotiating his third year of life.

A New Year

Our unexpected but blessed EA/TEF journey has been amazing really. I cannot believe this is the third year writing about our story and journey we have been on since my son, Christopher, was diagnosed with Esophageal Atresia with TEF. It’s been a wild ride with more ups than downs, which is what I think most people would prefer. Thankfully, there haven’t been too many downs this past year, but there has been lots of change and flux. Christopher is now a thriving and active 2 year old boy, we ran in six 5k races together, and he will be a big brother in the spring of 2020.

A New Diet

Last year around this time, we had just dealt with some “stuckies.” A swallow study was performed to be certain Christopher’s esophagus was still wide enough and whether there was need for a dilation. Thankfully, there was no need for any more surgeries, but he did get put onto a “pureed food diet” for day care purposes. At our final appointment with our surgeon in June of 2019 before we moved, the doctor gave the blessing for Christopher to go a year between surgeon visits. Our little boy is able to eat pretty much everything without the need to puree it. The main piece of direction from the surgeon came for us to monitor him closely while eating to ensure he chews properly and drinks regularly during meal times at home and daycare.

A New Base, A New Daycare

Being a military family, we frequently move from on base to another. We happened to move in July 2019 and had to essentially start over with new doctors, explain things to new daycare teachers, and adjust to a new location. This part of our year came with the most challenges to overcome. Christopher has been in three different classrooms since July and had three separate sets of teacher. Needless to say, there has been a ton of explaining what is and is not normal for him, what to look out for, and the fact that he can’t have whole milk. He’s been in his toddler room since September, so at least there has been more stability.  But when he had his first “stuckie” at daycare, as well as subsequent ones that arose when he was battling congestion, trying to explain to them how to deal with it was rather stressful. But we were able to get through it, and it feels they understand better now. As an EA/TEF parent, it seems you are always going to saying “This is normal,” “That will happen at times,” and “This is when you should be concerned.”

A New Addition

Our final challenge of this past year has been related to our newest addition to the family who will arrive this spring. While EA/TEF is not a genetic-driven defect, we have seen a genetic counselor, been closely monitored, and been prescribed more medications than during my last pregnancy.  Being a high-risk pregnancy has been a challenge, especially with a new job, an active toddler, and a dual military lifestyle where travel is inevitable. However, we are hopeful and optimistic that we can handle anything with the new baby considering our unexpected but blessed EA/TEF journey!

 

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Kristen Horton lives in Ohio with her husband Nathaniel, son Christopher, and dog Winston. She received her Bachelor of Science in Electrical Engineering from Clemson University in 2010. During her time at Clemson, she participated in the ROTC program and was commissioned as a Second Lieutenant in 2010. She also has a Master of Science in Electrical Engineering with a concentration in Electromagnetics from the Air Force Institute of Technology in 2012. Her son was born with an EA/TEF birth defect and she has made it her mission to ensure that he receives the best care possible and become as educated on the condition as possible.

Author Jolene Philo

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My First EA/TEF Memories

My First EA/TEF Memories

by | Jan 21, 2020 | Different Dream, Encouragement

My First EA/TEF Memories

In today’s EA/TEF Awareness Month post, guest blogger Mary Monahan shares the story of her EA/TEF experienced that began more than 60 years ago. Her story will bring hope to parents of younger survivors. It will also make parents and survivors alike grateful for the advances in treatment over the years.

My first EA/TEF memories are of being tied to my bed and being offered a graham cracker when I cried for my mother. In the 1950s, it was thought that staying on my back was best. Also, parents were not encouraged to stay with their children in the hospital in those days, so my early years were spent very isolated from my family.

I was born before albuterol and portable breathing machines, before VACTERL was even identified as a syndrome. I had my surgery when it was thought that surgery would cure me. All of the extra illnesses and swallowing problems, not to mention GERD, were believed to be of my own making. My adult medical care has been hit or miss due to my constant moves. I grew up long before social media and the internet connected me to the wider world of EA/TEF survivors. Now that I see what others are going through, I am still astounded at my luck!

To compound the issue, our family life was always chaotic. Any one thing could topple the tower. Our extended family lived out of range, and I was the second of seven children. Both my parents worked to support their large family. Because there were so many children to care for, my special health needs didn’t mean I was always specially cared for. I know what it feels like to be a mom to a child who seems to be ill all the time–I’ve lived both sides of the dynamic.

I am writing this to reassure parents who are struggling to care for their sick children, and for those who feel guilty. I recently turned 61. I am alive and have lived well in spite of having been born with EA/TEF. The combination of a bit of neglect and craziness in my early childhood has served me very well in the end. I’ve climbed mountains, rafted for days on a western river, ridden a tandem bike over five of the Fourteeners  (mountain passes over 14,000 feet hight) in Colorado. I left my marriage after twenty years and went back to graduate school. I still get really ill from viruses, and become a hermit during flu season, but I’ve adjusted to what my body demands of me. I am who I am because of how I started, and I am pretty pleased with myself, finally.

My first EA/TEF memories come from the dark ages of the condition’s treatment.  I am still here and have lived quite a normal, adventurous life. Like me, most of the EA/TEF children born today will go on to live very normal lives. Parents, find comfort and hope in that!

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Mary Monahan, pictured here as a young child with her father, is a 60+ year old EA/TEF survivor. Her surgery was performed less than 20 years after the first successful surgical repair. She has lived all over the US and Europe before settling down in the high desert shrub steppes of Central Washington State.  Mom to two grown children, Mary is employed by the state of Washington to oversee toxic waste site cleanups.

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