Guest blogger, Scott Newport, lost his son Evan a few years ago. Rather than hide his grief journey, Scott willingly shares his struggles with others on the same path. During a recent summer walk, he took a vacation from his grief and focused on the beauty around him. With the end of summer drawing near, I hope Scott’s poem will be a final summer getaway for you, too.

Vacation from Grief

Summer is always a great time to take a vacation, if sometimes just to get away from the life of it all. Getting away can often bring time of reflection on scenes of beauty often passed by or unable to engage with in everyday life.

This week I took an unplanned vacation from my grief. The funny thing is I didn’t even realize it till I stumbled upon a scene where a garden was in its full. Soon after this poem appeared on the page before me.  There is a lot going on in these words written by a man who hopes his love will one day read them.

September
by Scott Newport

Awakening life
She softly flows
Around the trestle
Of her blooming
Garden

Her hair reflects
The colors of
The summer
Reds and greenish
Hues

The stillness
Of the morning
Blue reflects
Her produce
Exposing morning glory

Hidden eyes of
Silent admiration
Look from far away
Wondering what
To say

In the
Standing tree lines and
Windless fields of
Golden grey
Speechless he can’t look away

As she leans
Over to prune
Her shears splice
The beauty of her
Life as a mother

In one way or another

What Do You Think?

I hope this mini-vacation includes time to reflect on Scott’s poem and contemplate what it means to you. If it touched you, please consider leave a comment about how it resonated with you.

Missing summer already,
Jolene

What a hard questions to have to ask. And what a hard question to try to answer. No doubt, some of you have had to ask such a question, and I can’t imagine the grief and sadness you have had to bear.

An Email from Miranda Gardner

A couple weeks ago, my editor at Discovery House Publishers emailed. “I read this article and thought of you and your new book,” Miranda said. (Miranda’s been thinking a lot about Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs, since she’s the one shining it up before its release in October.) I clicked on the link that took me to Two Minutes to Eternity, an article at the Christianity Today website.

Two Minutes to Eternity

The article was written by Marshall Shelley. He’s the editor of Leadership Journal which is published by Christianity Today. Shelley wrote the article in 1994 after he lost two children. Son Toby died from complications of Trisomy 13 after two minutes on earth. Daughter Mandy had severe developmental delays and died just before she turned two. And yet in the midst of his grief and pain, Shelley found comfort in the promises of God. Because his thoughts were so profound, filled with truth and hope, the article was recently republished at www.ChristianityToday.com.

Thank You , Marshall Shelley

Thank you, Marshall Shelly, for sharing your journey. Thank you for this wonderful resource to pass on to grieving parents who need hope. May we respond to others with equal sensitivity and compassion when families we love lose children they love.

Jolene

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.

Thanks,
Jolene

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 funeral.

In the months before Julia’s birth, Melissa combed the internet for 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 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.

• MEMORIAL JEWELRY: www.funeral-urn.com
• MEMORIALS: Pregnancy & Infant Loss Remembrance Day, www.anencephalia-info.org
• PHOTOGRAPHY: Now I Lay Me Down To Sleep

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.

• PERINATAL HOSPICE: www.perinatalhospice.org
• FAITH’S LODGE -  www.faithslodge.org
• GRIEVE OUT LOUD:www.grieveoutloud.org
• ANCHORED BY HOPE: www.anchoredbyhope.com
• MISS FOUNDATION: www.missfoundation.org
• STRING OF PEARLS: www.stringofpearlsonline.com
• MEND:www.mend.org

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 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.

Thank you again, Melissa!
Jolene

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 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 funerals for kids, 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 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.
• FUNERAL SERVICE PLANNING: www.nationalshare.org, www.janelbak.com, www.myveryownangel.org
• 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?

We’re lifting you up, Melissa!
Jolene

Grief is a constant companion for parents of kids with special needs, whether their child lives or dies. Often they need someone to talk to, but finding a good listener isn’t easy.

Music for the Soul

Music for the Soul founder, Steve Siler, has a new song to remind us of how important it is to listen to struggling people instead of giving them advice. You can access a free download by clicking on the song title, Listening.

Devotion by Shelly Beach

My good friend Shelly Beach wrote a devotion to accompany Steve’s song. It, too, is a reminder of the great impact our presence can have in the lives of struggling people. Thanks, Shelly and Steve, for sharing your talents again this month.

Listening

The phone shrills. A bleary glance at my bedside clock tells me it’s nearly three am. I know the voice on the other end will be my dear friend Amanda, mother of five children spanning the ages of two to ten years old.

I’ve invited Amanda to call any time, day or night, and she does. Amanda and Rob’s second child, eight-year-old Johnny, is dying of brain cancer.

Amanda does not need answers. She does not need to hear how I grew through my painful life experiences. She does not need me filling the awkward spaces with words. She needs a shoulder. She needs a friend who is comfortable with silences. She needs someone willing to absorb pain and hard questions and witness the rending of a mother’s heart.

Too often, I pretend to listen when friends and loved ones look for a listening heart. Too often I offer superficial nods and trite answers. I’m often blind to the apathy of my self-centeredness. May we all pray that Jesus’ love increase and our own self-focus decrease as we learn to offer the gift of presence, to lean in, and to attend to others in their moments of sorrow, abandonment, and suffering.

Guest blogger, Scott Newport, called this morning with a reminder about Compassionate Friend’s worldwide candle lighting. Families and friends desiring to remember the lives of children who have died will light candles this evening from 7 – 8 PM in their time zones. Read more about it at www.compassionatefriends.org.

If you’re a Facebook friend of Scott’s, he posted a devotion about Evan on his page this morning. If not, be thinking of his family today as they try to find purpose in the loss of their son. If you have lost a son or daughter, I am so sorry. If you like, share a memory of your child in the comment box. I would love to hear your story.

Remembering,
Jolene

After a recent interview with a parent, part of the research for the work in progress, Different Dream Parenting: Raising a Child with Special Needs, I was speechless. The wisdom of the young mom who granted the interview blew me away.

Parenting for Life

The mom and her husband, only 25 during their son’s brief life, packed more parenting into his two weeks on earth than most of us accomplish in two years. In fact, their parenting began months earlier when an ultrasound revealed significant abnormalities not compatible with life. Still, this dad and mom chose to “parent for life” and continued the pregnancy. They also parented by undergoing tests to determine the cause of the condition. Because it was not genetically based, they may have more children some day. But if the opposite had been true, they were prepared to chose differently.

Parenting in NICU

After their son was born, the extent and nature of his physical anomalies were discovered. His condition couldn’t be corrected by physicians. His brain function couldn’t sustain life. Knowing their son’s life would be brief, they made it as rich as possible. They were with him each day in NICU, talking to their baby and touching him. “We did as much of his care as the NICU nurses could allow.” Their pastor came and performed a baby dedication which was followed by a celebration. They took pictures, lots of pictures, over 800 pictures. They made tiny plaster casts of his footprints and hand prints, and they stored locks of his hair in a little memory box.

What to Read in NICU

“And,” this young mom said, “we read the book of John to him. Out loud. In the NICU. We know he couldn’t understand it, but it helped us. It was something we could do for him, a way to care for him spiritually.” She began to cry.

So did I, humbled to be in the presence of a woman so young, yet so wise. Grateful for the dad and mom God gave this little boy. Grateful for the wonder of his short life. Amazed by the blessing he will be to other parents. In possession of an answer for families who ask how to parent a baby whose life will be short.

“Read aloud to your baby,” I will say from now on. “Start with the book of John.”

Amen.

As promised here is a follow-up post from guest blogger, Scott Newport. In his last post, he described his crusade to get palliative care at home for his son, Evan. This week, he tells how one member of the team helped Scott and his son Noah find pockets of joy even when Evan’s death was imminent.

Little Moments that Last

A couple of weeks back I found myself sitting alone in my woodshop. Silence was present except for the click-clack of a ticking clock. The sturdy bench I was sitting on was a project I had just completed, constructed out of reclaimed redwood. My Die Hard leather boots were resting comfortably on sawdust and the cobwebs hanging from the corners of the room were doing a slow dance as a summer breeze caressed its way through the open door. My work bench was clear except for my handcrafted mallet. The upright maple handle was glistening from an inquisitive ray of sun sneaking past the cracks of a broken window. A long shadow let me know it was getting late.

“Hey Scott, is it okay to come in?” A woman’s voice spoke from the door behind me.

As I shifted my body around, I saw it was Linda, the social worker from Walk with Me. As she entered through the door I was a bit embarrassed. She had to step over an extension cord and push a piece of scrap wood away with her foot. I am used to maneuvering around my shop but I wasn’t sure if she would be.

“Hey Linda, I almost forgot you were coming over. We can go up to the house to talk. Is it my turn?”

“Yep, it’s your turn, Scott. Remember? Last time I was here I did some art work with Noah.”

“Oh, that’s right,” I recalled. “Noah’s such a great big brother.”

“Why don’t we just sit here and talk,” she gently said.

I unfolded a lawn chair I had garbage-picked, wiped off the dust, and we started to talk. As our conversation went on that day, thoughts that had been hidden away somehow emerged, and Linda just listened. For a moment I couldn’t understand why I was speaking words that I thought shouldn’t be said. Linda reassured me through my tears that it was okay to feel and say what I was experiencing. She explained to me about little moments. She called them “pockets of joy.”

I don’t know how long we sat in my sun-drenched woodshop but as we wrapped up our time together, I thanked Linda. She made her way to the door but I said, “I think I’ll sit here a bit longer. If you want to see Evan, he is up at the house with Nurse Jalinda.”

After she left I realized what an amazing woman she is. Talking in the midst of my environment made the difference. Turns out her dad was a carpenter, too. So I guess she was more familiar than I thought about maneuvering around my place.

After pondering for awhile on that dusty bench, I soon found myself writing this poem for Linda.

A Book about Me

Conversations with you are like learning to read a book about me
Listening reveals father, son, husband and hurt
Watching you paint with Noah helps words find meaning
Each brush stroke from his heart opens mine to the future
Penni’s hands on the crib ready to touch
Your hand ready to catch each tear that drops
Helping us walk with Evan, circles us all to share
Preparing for his death brings us closer to life
Your presence sweeps the fear away and
Allows us to gather the fleeting pockets of joy

When we get where we’re going, your work will be done
But your memory will be engraved in a book about me

Where Do You Find Pockets of Joy?

How and where do you find pockets of joy while caring for your child with special needs? Please leave a comment in hopes that your strategy will help other parents cope, too.

Jolene

Editor’s Note: Learn more about Scott and his family by reading his bio on the Guest Blogger page. To access more of his guest posts, click on the magnifying glass at the top of this page and type “Scott Newport” in the search box.

The story of Tom and Joanne Kasprzak and their daughter Mary has been around awhile, but I just heard about it.

Mary Kasprzak

Mary was born with Down Syndrome. When she died unexpectedly at age 15, her brother suggested donating Mary’s organs for transplant. At first, the doctor’s were reluctant an Down Syndrome, as it is often accompanied by heart defects. But the Kasprzaks knew Mary’s heart was fine, so they persisted, and Mary’s heart went to a young woman in New York. Eventually, four other recipients also benefited from the Kasprzak’s compassion. You can read more at norwichbulletin.com.

Plain Vanilla with Rainbow Sprinkles

Tom eventually wrote a book about Mary’s life, death and the gift of life she gave to others through the donation of her organs. I haven’t read Plain Vanilla with Rainbow Sprinkles yet (the stack on my nightstand just keeps growing), but hope to soon. If you’ve read it already or read it before I do, leave a comment. And be sure to tell us how many tissues to have on hand while we read.

Hats of to the Kasprzaks,
Jolene