by jphilo | May 5, 2011 | Different Dream, Grief, Spiritual Support
In yesterday’s post, guest blogger Scott Newport told of time spent with a hunting buddy in Kentucky. Today he explains that he and his buddy are more than ordinary friends because they are fathers of terminally ill children.
If the Walls Could Talk, Part 2
After the Hunt
After the hunt, I returned back to my in-laws’ old family farm that has been passed down through the generations. We were visiting over spring break. I pulled up a lawn chair, next to a fire built by my father-in-law. Watching the fire, I couldn’t help but rekindle the memory of that old log building on that hill and all the history behind it.
Easter Celebration
As I kept the fire going, the rest of the kin were getting ready for a big Sunday get together for Easter. I think we had close to 40 visitors that day. My buddy had brought over his big smoker the day before and a pig roasted on it. The women gathered on the porch, giggling and stuffing plastic eggs full of candy and small toys for an egg hunt after dinner. The children were all playing tag and throwing a ball in the yard that must be at least five acres. The yard is surrounded by 80 acres of rich farm land and a few small pockets of woods. My son, Evan, although not able to play like the others, sat so content on a gray metal cooler full of ice and drinks. His feet dangled, nowhere near the ground. I know he was in his glory just to be outside. His sparsely spaced teeth couldn’t hide his smile full of life. His unusually wide-spaced eyes and protruding tubes that can’t be hidden were no match that day for any sadness some may have for him.
As the evening came to an end, and the last set of headlights made its way down the long, gravel driveway, I couldn’t help but wonder. Could it be some day, long from now, the walls of the old family farmhouse will tell stories of this special day? Maybe it will tell of the morning hunt, or maybe the kids playing tag and searching for Easter eggs. But I hope it will tell the story of just some plain and not so plain folks getting together to share life.
The Family Legacy
Falling off to sleep I thought of the legacy of this old farm house which has only three rooms. I cried a bit as I thought of Evan and Lindsey and how we were not able to leave them a legacy. But I quickly smiled and then sighed when I pictured Evan on that old metal cooler.
As I dreamed that evening, I could imagine a family sitting on and around the country porch just outside the bedroom window and singing on a Sunday afternoon. Maybe the gospel tune, Give Me that Ol’ Time Religion. Remember what it says at the end of each verse? “It’s good enough for me.” I also like the part that lets us have peace. “Give me that Ol’ time religion, It will do when I am dying.”
If these walls could talk, surely they’d have a legacy to leave to anyone who would listen. I know we all, as parents, want to leave a legacy to our children. But maybe in some cases, it’s okay for our children to leave a legacy for us. Like Lindsey. Like Evan.
Scott (Evans dad)
Epilogue
Scott adds this epilogue to explain what the piece means to him: The cabin, which Dave had visited many times before, was a symbol of him visiting his daughter’s death. The bird is a reminder that my friend has taken me under his wing and to show me that death may not be all that sad. The memories at the old cabin symbolized the memories of his daughter. I think my friend wanted to show me the cabin as a way to prepare me for Evan’s death. I think he wanted me to know that I don’t have to walk alone. Just a thought.
Evan’s Legacy
When the story was written, Scott’s son, Evan, was still living. He died the day after Thanksgiving in 2009 at age 7. Since then Scott continues to share the legacy of lessons learned during his son’s short, rich stay on earth. If you received a legacy from Evan while reading the story, join us in honoring his memory by leaving a comment below.
Part One
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by jphilo | May 4, 2011 | Different Dream, Grief, Spiritual Support
Today’s post comes from guest blogger, Scott Newport. The themes are spring, Easter, and the legacies we leave our children. The story is a precious memory of the days when Scott’s son Evan was still living. So join Scott and his hunting buddy on a tramp through the Kentucky woods.
If the Walls Could Talk, Part 1
Before I could say a word, my hunting buddy Dave had stopped and jumped out of the truck we were in. He grabbed a small disposable camera as he headed for an old log building.
“Hey Dave, what are you taking a picture of?” I asked.
Slowly, he turned his head and looked at me as though I should already know the answer and whispered, “I am taking a picture of a new-found home.”
A New-Found Home
I thought he must be crazy as he spoke, and I started to slip out of my seat. Maybe it was just another one of his southern sayings. You see, we were in the middle of a hundred or so acre, rolling hay field in southern Kentucky early one spring. We must have been on top of the tallest hill in Calloway County, as the view was just spectacular. We had been out hunting since before daybreak, and I shot a fattened turkey in the nearby woods for Easter Sunday supper. He thought it would be nice to have a picture of me, a Yankee, in front of an old, seemingly abandoned log cabin that was built in the 1800s.
I walked up to the overgrown brush still full of morning dew. I could see Dave, slightly crouched down and nestled behind the entanglement of honeysuckle. He put his finger to his lips to silence my footsteps and pointed with the other to a turkey vulture that had a nest in the top of the tipping, old rock chimney of the cabin. “Ahhh,” I whispered back. Now I knew what he was talking about.
The Cistern
After he took a picture of the vulture, and even a few of me with my hunting prize, he pointed to a clump of bushes and tall grass that hid the remnants of an old well or cistern. He pushed the limbs away as we both peeked down the well and, to my surprise, it was near full of water. I wondered how many buckets of water had been pulled out of there for a cool drink or maybe to do some dirty laundry after a hard day of working in the fields.
Inside the Cabin
Even though that was my first time at the cabin, it wasn’t his. I knew there must have been many here before us. It was surely a legacy that had been passed down for generations. Before my imagination went wild with old tales of years gone by, he stepped on to the old wooden porch that still creaked – probably the same as it did the day it was built. He stepped inside and invited me to follow as he pointed to a hole in the floor. “Be careful,” he said, still keeping his voice down. The sound of the bird’s footsteps sounded as though a child was throwing small pebbles on to the tin roof.
As I cautiously looked around in amazement, I noticed half of the roof was missing. This allowed enough light to see the floor’s skeleton, which couldn’t hide the many hand- hewn logs. It was obvious the builder of this home was a fine craftsman. The house had only two rooms. The one in the front was the main room, and the one in the back must have been for sleeping. There was even an old wood-burning stove partially falling through the rotten floor. The walls were made of logs, and loose mortar – now homes for hornets – still filled the cracks.
If These Walls Could Talk
As we stepped off the corner of the porch, my southern buddy looked back at the home and said as he touched the walls, “If only these walls could talk they surely would have many stories to tell.” He then turned his whole body around as though he imagined we were both there on an Easter, maybe a hundreds years ago.
“Just imagine all the children who rested on this front porch after playing a game of tag or maybe throwing small stones down in the well just to hear the plunk and the echo of sound off the dirt walls,” he said.
I joked back at him. “I bet a few jugs of white lighting had been sipped here after a successful hunt, too.”
He laughed. “Yea, you’re probably right, but not today.”
I started to feel his imagination and love for the cabin. I even felt a little proud as though I just had brought home supper. I am sure there was no guarantee back in that day the father would be able to bring home the sustenance of life.
A Special Bond
This whole particular pioneer journey in my life began a few years back. You see, me and my southern buddy share more than just hunting stories and adventure, we also share a story few ever tell around a campfire or a Sunday get together. We both have a child with a terminal illness. My son was still alive; his daughter, Lindsey, has gone but her memories will never be lost. We never talk much about it to each other but that’s why we are so close. We don’t have to talk about it. We just know. Even though we live hundreds of miles apart, every time we get to meet, we are like brothers who have come home from a war few have fought. He is probably the only guy I hug.
Come Back Tomorrow
The cabin tour is over, but much remains to be explored in relationship between these fathers of children with terminal diagnoses. So come back tomorrow when the walls will whisper the rest of their secrets. Until then, type “Scott Newport” in the search box to read his previous posts at DifferentDream.com.
Part Two
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by jphilo | Apr 27, 2011 | Different Dream, Grief, Spiritual Support
In the previous post in this series, you met Melissa. During her second pregnancy, she and her husband learned their daughter Julia had a condition incompatible with life. Instead of preparing a nursery for their daughter, they prepared for a child funeral.
In the months before Julia’s birth, Melissa combed the internet for child funeral planning resources. Melissa shared her finds with me a few months later, shortly after she began breast cancer treatment. Doing so was a way to honor little Julia, she said. What an amazing woman, I say.
Resources for Creating Child Funeral Memories
Melissa’s funeral planning resources are listed in the previous post. This entry concentrates on two other types of resources: those parents can use to preserve memories of their children, and those designed to support them as they grieve. Let’s look at the memory makers first.
Resources for Grieving Parents
Below are the resources Melissa found for grieving parents. Most of these are for parents dealing with infant death because that was her situation. Many more grief resources are provided in Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs which will be released October 1. If you need resources now, type “grief” in the search box to locate more.
What Have You Found?
Didn’t Melissa create a wonderful list? Isn’t her effort a tribute and a remembrance of her daughter, Julia? If you have discovered more child funeral and grief resources, please share them in a comment. Or leave a note of encouragement for Melissa as she continues her breast cancer treatment. And please, keep lifting her and her family up in prayer.
Part 1
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by jphilo | Apr 25, 2011 | Different Dream, Grief, Spiritual Support
No one wants to talk about planning a child’s funeral. For those of us without experience in the matter, the topic is uncomfortable. We avoid it at all costs. For parents who have lost a child, it is a searingly painful time, and they need resources and support while going through it.
Planning a Child Funeral
When our son was fifteen, he asked us to help plan his funeral before he went through a very serious surgery. The whole story can be found in Chapter 18 of Different Dream Parenting: A Practical Guide for Raising a Child with Special Needs. (The release date is October 1, but it’s already available for pre-order on Amazon. Go figure!)
While writing the chapter on planning a child funeral, I found a few good resources, but not nearly as many as for other chapters of the book. Thankfully, several parents graciously (and tearfully) shared their stories for the benefit of others going through the same thing. I am in awe of their willingness to unwrap their pain so others can find healing.
Meet Melissa
In March of this year, a few weeks before the manuscript was due to the publisher, I spoke at a MOPS group in River Falls, Wisconsin and met Melissa. During her pregnancy, she and her husband learned their second child, Julia, had a birth defect not compatible with life. While waiting for her November 2010 due date, Melissa combed the internet for information about planning an infant’s funeral.
An amazing woman, don’t you think? Well, that’s not the half of it. The day before the MOPS meeting, Melissa learned she had breast cancer. Even so, when we talked after the meeting, she offered to send a list of the resources she located. A few weeks later, even though she was going through chemotherapy, she emailed the list before the book deadline. Told you she’s amazing.
Check Out Melissa’s Child Funeral Finds
Some of the information sent by Melissa is included in Different Dream Parenting. Some of it is listed below. The rest will appear in a post on April 27. If you know a family facing the death of a child, please pass the information on to them if you think they would appreciate it. Melissa and other parents interviewed for Different Dream Parenting found funeral planning to be a healing act of parenting, something they could do for their child.
- BIRTH-DEATH ANNOUNCEMENTS: www.babydeckar.com
- BOOKS: Mommy, Please Don’t Cry by Linda DeYmaz
- BURIAL GOWNS: Baby Bereavement Gowns, Angel Layettes, and Mary Madeline Project
- CASKET: Melissa says the Trappist Monks in Iowa sell gorgeous caskets for infants, toddlers, and children at www.trappistcaskets.com.
- MUSIC
Jesus Loves Me
I am Jesus’ Little Lamb
Blest the Children of Our God
In Christ Alone
Go My Children
Be Thou Near to Me by Selah
Remember Me by Mark Schultz
I Will Carry You by Selah
Precious Child by Karen Taylor Good
Still by Gerrit Hofsink
A Mother’s Love by Randy Thompson
Eternity by Vineyard Music Group
How Can I Help You Say Goodbye by Patty Loveless
An Angel’s Lullaby by Richard Marx
Butterfly by Mariah Carey
Somewhere Down the Road by Amy Grant
- OBITUARIES: Sample Infant Obituaries
Enough Already
The mind can handle only so much at a time. Rather than giving you everything to absorb in one fell swoop, I’ve divided Melissa’s wonderful resources into two parts. So come back on Wednesday, April 27 for more. While today’s resources focused on the funeral, the remaining ones are concerned with grief resources for families. Not a happy topic, but oh, so necessary.
In the meanwhile, if you know of other resources please share them in the comment section. And would you join me in praying for Melissa and her family as she continues treatment for breast cancer?
Part 2
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by jphilo | Mar 28, 2011 | Different Dream, Grief, Spiritual Support
On Friday, guest blogger Scott Newport shared Part 1 his story about going on vacation with his family a few years back. Making the trip wasn’t easy with medically fragile son, Evan. But the rare opportunity to go fishing with his other son, Noah, made the trip worth the effort. In the second part of this series, Scott tells about lessons learned from the sea gulls he usually considers pests.
A Shadow Cast, Part 2
After a great day with Noah and a good night’s sleep, I got up the next morning and decided to go to the lighthouse again. (I’m an early riser when we’re at home, since I fill in the gap from the time that Evan’s midnight nurse leaves at 4:30 a.m. until Penni takes over at 7:00 a.m. so I can go to work.) After a short drive up the scenic shoreline road, I arrived at the harbor. It was another perfect morning: a quiet beach, the lighthouse in the distance, not a cloud in sight, not a shadow cast to darken my day.
Oh, It’s Just a Seagull
Instead of walking down the sandy beach of Lake Michigan, I found a quiet place to park the car. I sat and watched the day develop over the lake, the water broken only by an occasional white cap making its way to shore. As my mind started to wander its way about my life, something flew past the car. I have always been a bit of a bird enthusiast, and this was no bird I’d ever seen before. I snapped out of my quiet, reflective mood and went into scientific exploration mode. Before I could scramble out of the car for a better look, the bird flew by again.
“Oh, it’s just a seagull!” I said, out loud and to no one in particular.
Searching for Shadows
But wait, was that the same magnificent bird I had just seen? It was. Somehow the rising sun was in just the right position to cast a shadow on the bird and give it a glory I’d never noticed before. I was so impressed with the shadow’s effect on that dirty old seagull, I started searching for other shadows.
I studied the shadows cast by the beach’s small mounds of sand, creating the effect of rippling water. Each mound had a distinct shadow, and the shadow changed as the sun rose behind me. The shadows gave individuality to each rise in the earth. I thought that without the sun beaming down on them, the depth and height of the mounds might never be noticed. And I thought about the Grand Canyon, about how the rising sun casts blue and purple shadows while at the same time lighting up the south rim as if it were on fire.
I’ve usually thought of shadows as having only negative attributes. Like how they’d spoil a perfect day at the pool when I was a kid. Or how monsters in Halloween haunted houses always hid in the darkest shadows. Or, like when Evan was born, some people said things like: “It must feel like you are in a tunnel with no light at the end” and “It must seem like you’re under a black cloud that won’t go away.”
Embrace the Shadows
It’s true that Evan’s birth cast a shadow on our family. But Penni and I love our son just the way he is. Then, as now, we embrace all the light he brings to us. We also embrace the shadows cast by his life because they outline and offset each moment we have with him, clarifying the depth and height of our love.
I still don’t love seagulls, but it is funny how my perception of them has totally changed. Where I’d thought of them as a downright unwanted species, I now see them in a different light. I guess you could say I have a new found appreciation for them. Maybe folks with disabilities—including my son—are like seagulls; sometimes they’re put into a caste and labeled “unwanted,” and “inconvenient,” and “embarrassing.” Society turns its head away when it passes you on the sidewalk. But instead of seeing people like Evan as a dark shadow, it would be great if society could see us as covered in the shadows that give depth and height and glory to life.
Beauty in Darkness
What I hope for now is that when the son does goes away and there are no shadows cast, I will learn to find beauty in the darkest of nights. I trust that the moon, which shines thanks to the unseen sun, will cast all new shadows for me to see. I also hold out hope that all people will learn to open their eyes and see the beauty of the shadow caste.
Scott (Noah and Evan’s Dad)
How Have You Embraced the Shadows?
I don’t think Scott will ever like seagulls much. Yet, a seagull’s shadow helped him appreciate life with Evan more than ever. What has helped you embrace life as the parent of a child with special needs? Leave a comment so we can learn from you.
Part One
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by jphilo | Mar 25, 2011 | Different Dream, Grief, Spiritual Support
For families of kids with special needs, going on vacation can be hard work. In this post, guest blogger Scott Newport tells about a vacation their family took several years ago with their two sons: Noah, a typical second grader at the time, and Evan, who lived with a congenital heart ailment known as Noonan’s Syndrome. In today’s installment, Scott tells about traveling with a medically-fragile kid and about the pesky seagulls that cast a shadow on the trip.
The Shadow Cast, Part 1
This summer, our family traveled to the shores of Lake Michigan for a weekend retreat. Packed into our vehicle along with suitcases, beach toys, and other gear, we looked like your usual weekend adventurers. Penni, my wife, sat slightly cramped in the back seat between our boys, seven-year-old Noah and four-year-old Evan. Riding shotgun with me was Evan’s nurse.
Meet the Family
I guess I should explain that while Noah is an average rising second grader, Evan has defied all odds just by reaching his first birthday. Now, at age four, he lives with a terminal heart disease called hypertrophic cardiomyopathy and a variety of other complications brought about by a genetic condition called Noonan’s Syndrome. Hence, the nurse.
In many ways, Evan doesn’t really fit in with society. He looks a little different. He’s still wearing diapers. He takes many medications. He is fed through a tube in his stomach. He breathes through a tube in his neck and, sometimes, with the help of a ventilator. He’s not your typical kid.
Meet the Family on Vacation
As you can imagine, life with the Newport family is pretty atypical when compared to the rest of society. For instance, half the “gear” packed into our car belonged to Evan—medical equipment, extra supplies, and emergency apparatus. Even taking a family vacation was an extremely rare and very special treat for us. Evan’s fragile condition, combined with our need to stay close to his doctors and the fact that a nurse must come along, usually discourages us from venturing out.
But, despite the odds, there we were, speeding along a busy and well-groomed highway on our way to my parents’ summer cottage. As we drove, I noticed a large hill off in the distance that seemed a little out of place. Noah said, “Hey Dad, what is that gigantic mountain over there? And what is that cool looking cloud over it?”
Meet the Dirty Birds
As we got closer to the sprawling mystery hill, an unpleasant odor filled the car. Everyone, as though on cue, turned their heads toward Evan. Penni quickly checked Evan’s diaper and laughed, “Nope, not him,” and flashed us all the thumbs up sign. Just then, a light switched on in my head and I said to Noah, “That’s the local garbage landfill. And that cloud is actually seagulls.” The swirling mass of determined gulls circled and circled, casting a shadow onto the hill of garbage.
I thought to myself: Seagulls…definitely not one of my favorite birds! Dirty. Loud. Obnoxious.
The landfill notwithstanding, the trip was uneventful. We reached the cottage that evening, unpacked, and Noah and I agreed to go fishing the next morning.
Gone Fishing
The following morning, we drove north to a spot Noah remembered from a previous trip. We meandered along with fishing poles in hand, walking toward a red vintage lighthouse at the end of the breakwater. It was a beautiful morning and, as we walked amongst the towering rocks and broken concrete that protect the harbor, there wasn’t a cloud in the sky to cast a shadow on our father-son outing. Truth be known, I think Noah was more interested in spending a little time with Dad than in fishing. It’s a rare occasion that Noah and I can spend quality time alone together.
It looked like a few other father and son teams had the same idea as us; bobbing fishing boats were headed out of the tiny harbor with men and boys standing on the aft decks, situating their poles and gear for what promised to be a great day of fun. As I watched them leaving the harbor, I hoped that someday I’d be able to afford a fishing trip for Noah and me. But with all of Evan’s medical bills, money is always a little short. I guess that dream will have a shadow over it for awhile, or maybe forever.
Breaking into my thoughts, Noah proclaimed, “Hey Dad, look! There’s an army over there.”
“What do you mean, Son?” I asked.
“Can’t you see all those soldiers on the beach?”
“Ah, okay, I see them now,” I whispered back.
Noah’s army of soldiers standing arm to arm was actually a huge flock of those dang seagulls. I thought: This time, at least, they aren’t eating garbage. But they’re crowding up the whole public beach. What a nuisance.
Come Back Monday for the Rest of the Story
As you can see, Scott isn’t a big fan of sea gulls. Even so, in the second post of this series, he learns something from the very birds he considers a nuisance. You won’t want to miss what he learned in the shadow of a sea gull.
Part Two
Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly 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.
