by jphilo | Aug 5, 2012 | Different Dream, Grief, Spiritual Support
Grief and Hope On the Other Side of the Mountain
Grief and loss are emotions experienced daily by parents of kids with special needs. Those emotions can be difficult to share with parents whose kids are healthy and typical. Maybe that’s why parents like us bond deeply and find hope in our relationships with other families in the special needs community. Today, guest blogger Scott Newport gives an example of the importance of hope and those relationships through a story and the poem it spawned.
Grief and Hope on the Other Side of the Mountain
Growing up, I didn’t learn how important it was to listen to others and then engage with them in life. Today, I know a little about it and the importance of relationships. Recently, a woman wrote me this note. Listen to her words, imagine what she sees, and allow yourself to feel the deep emotional side of her epiphany.
I know we have never met, but today I thought of you. I was driving the 3-hour drive with my son to see the cardiologist. On the way, we passed through several rock ledges where rocks (mountains) have been dynamited to make roads. As I drove today, I noticed (for probably the thousandth time) the trees that grow here and there, way up on these sheer rock walls, defying all probabilities. Against all odds. And I thought my son is like those trees. In spite of his heart, in spite of what modern medicine says, he defies the probabilities. He beats the odds. He grows though what should be impossible. And then I thought “Scott would get this. He could write a poem or story, and it would make sense.”
After I read this note I knew what she meant, and I wrote this poem. Originally I thought the words of the poem would be about her son and his life-limiting heart disease but soon found out it was about her hope as a mom. The funny thing is, it’s also about my hope as a father who has lost a son to heart disease.
Anyway I want to thank Sharon for engaging me with this story and my ability to listen beyond the words.
Sharon’s Sky
By Scott Newport
Even though her son
Has heart disease, she
Still drives on looking,
Searching for answers
Standing there in the midst
Of the impossible, her eyes
Open nature one morning
Silently unraveling
A truth she has passed
Many a time
(She told me one thousand times)
The tree perched on
A cliff where soil
Has been etched away
By the winds of poor
Prognoses given
By those who
Pass by
The mountains held
Back by a reverse in
Nature—signs of drilling
And dynamite remain
The sky with seemingly
No foundation except
For her hope to
See another
On the other
Side
How Do You Deal with Grief and Loss
Sharon found hope in grief by sharing with Scott. Scott dealt with his grief and found hope by writing a poem. (He also recommends CompassionateFriends.org as a grief resource.) What outlets provide comfort for your grief? Where do you find hope? What resources and organizations do you recommend? You can reach out to others by leaving your ideas in the comment box.
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.
Scott Newport is a carpenter who has a vision for unwanted, damaged wood. His finds are treasures to his soul. Each discovery he makes unfolds into a beautiful piece of furniture for which he finds a home, usually with a child or caregiver of a child with special needs. He writes about the life lessons he learns from his 3 children, especially from Evan who died in November of 2009 after 7 years of joyful life. To access all of Scott’s guest posts, click on the magnifying glass at the top of the page and type “Scott Newport” in the search box.
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by jphilo | Jul 24, 2012 | Different Dream, Grief, Spiritual Support
The Bereaved Parents Club
Guest blogger Scott Newport belongs to a club no parent wants to join—the Bereaved Parents Club. In observance of the month, Scott sent this post and a poem to share with you.
Did you know July is Bereaved Parents Month? Yeah, I found out the hard way when my son died a couple of years back. Each month that passes, I find there is no escape or relief from the grief our family endures. I have found that writing helps me to better understand the sadness and be able to continue on with the ones of us left behind.
One of my poems about grief was published in We Need Not Walk Alone, a magazine published by The Compassionate Friends organization, back in the spring of 2011.
As my Different Dream has come true in life, I will continue writing, and I will keep living the dream I never expected or even wanted. But I would never go back to the dream I had before Evan.
Anyway, in honor of this month I wanted to share the poem about grief with you.
Garden of Grief
Grief is like a wild vine growing
It thrives in all conditions
Drought or floods have little effect
As I see the serpent navigate
I wonder if the new buds emerging
Are going to be venomous flowers
Or another shoot
Headed in another direction
Each thread of its being
Searches for cracks to fill
Or innocent prey
Soon to be entangled in its hold
I tried to prune it one day
But all it did was become
Stronger, my mistake
Leave a Comment for Scott and other Bereaved Parents
Many of us don’t belong to the Bereaved Parents Club, so we don’t know how Scott and other members of the club feel. But we can leave messages of support for them, messages to remind them that people care about them, their children who died, and their grief journey. So leave a comment for Scott and other parents living a very different parenting dream than they expected.
Thanks, Scott, for sharing your heart with us!
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.
Scott Newport is a carpenter who has a vision for unwanted, damaged wood. His finds are treasures to his soul. Each discovery he makes unfolds into a beautiful piece of furniture for which he finds a home, usually with a child or caregiver of a child with special needs. He writes about the life lessons he learns from his 3 children, especially from Evan who died in November of 2009 after 7 years of joyful life. To access all of Scott’s guest posts, click on the magnifying glass at the top of the page and type “Scott Newport” in the search box.
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by jphilo | Jun 7, 2012 | Different Dream, Encouragement, Spiritual Support
Are You Discouraged? Remember the Moments
Raising a child with special needs requires perseverance. You know that. I know that. And Rachel Cordeiro, a new guest blogger at DifferentDream.com, knows it, too. She’s the parent of three children, one of whom has special needs because of her premature birth. Today, she blogs about how she fights discouragement by remembering key moments in the life of her daughter, Camelia.
Moments
I pour every part of myself into working with and helping my daughter because I want her to have the best—to be her best. Simple tasks often prove to be complex, and facing obstacles and challenges has become routine.
It’s tiring. It’s hard. The days are long.
Relief showers me at the end of every day; but as I whisper a prayer of thanks to the Lord for helping me, I find that my prayer of thanks quickly turns to a cry for help!
How am I going to do it all again tomorrow? I wonder. Is all my hard work making a difference? Does she understand what I am teaching? How much of it is she retaining?
As I pillow my head, many questions and worries fill my mind. I get discouraged. I feel like giving up. But then I remember the moments. Moments sprinkled throughout weeks—sometimes months—of difficult days. Simple, yet encouraging. Quiet, yet speaking volumes to my heart.
There is one such moment still encouraging my heart today.
My daughter, Camelia, was three years old when she spoke her first words. I love you was not among them. She never said it on her own, nor in response to when I told her. She had words, but was unable to express or communicate her feelings. My heart ached for the day when she would answer in return!
In the meantime, I had observed how much she enjoyed holding my hand. (Because Cami is visually impaired, she sees and explores her world primarily through touch.) Holding hands seemed to provide the security and comfort she needed but at a distance comfortable for her; she often preferred it to hugs.
Slowly, an idea formed: I decided to say “I love you” as often as I could while holding her hand. In order to tangibly reinforce the message, I also decided to squeeze her hand while simultaneously speaking each word—“I… LOVE… YOU.” I stated each word expressively with each gentle but firm squeeze.
Though she did not reciprocate the gesture, there were times I thought I saw a smile slowly forming at the corners of her mouth. Does she understand my love? I questioned. Still, I continued with the hand-squeezing I love yous.
Then, when she was around six years old, the moment came. One Sunday evening, while sitting together in church, her small hand rested gently in mine. As I quietly listened to the sermon, the moment was what I considered to be ordinary.
Suddenly, I felt it. Three small yet unmistakable hand squeezes.
I had to stifle the sob that wanted to escape my throat as tears welled up in my eyes. She gets it! I thought. She gets it and she’s letting me know how she feels! A simple moment turned extraordinaire. A moment which breathed hope, providing an answer to the question I desperately needed to know. No amount of my work and effort had been in vain—nor will it ever be. That moment made everything worthwhile, dimming every heartache along the way.
Today Cami continues to learn, understand, and express what she is feeling in her own time, in her own way.
Are there still hard days? Yes.
Do I still get discouraged? Often.
But then I remember the moments. Unexpected. Beautiful. Rewarding. Moments.
How Do You Fight Discouragement?
How do you combat when discouragement threatens? Please, share your strategies since it’s a battle all parents of kids with special needs fight from time to time. And come back tomorrow when Rudy guest blogs about parents of kids with special needs can partner together. See you then.
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.
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by jphilo | May 9, 2012 | Books and Resources, Different Dream, Spiritual Support
Those of you who visited DifferentDream.com yesterday met our special guest, Jill Kelly, when she shared the story of their son, Hunter. Hunter was diagnosed with Krabbe Disease as an infant and died from the condition at age seven. In today’s question and answer session, Jill explains how her family continues to advocate for children with special needs.
How are you involved in the special needs community now?
We have both a national and local presence. We do fundraising through Kellys for Kids, which is a global organization. Hunter’s Hope Foundation holds an annual medical symposium. During the four day conference, families come from all over the world to gain in-depth information about leukodystrophies, learn about the latest developments in scientific research and medical care, identify available resources, and develop support systems. We minister personally to those families when they are there. On a local level, we are active throughout western New York state. We join families as they fund raise, meet with kids at school. Hands-on love is a great blessing.
Erin and Camyrn have a ministry for tween girls. The first book in their Hot Chocolate with God series was released in September of 2011, and tweens can visit their website at www.hotchocolatewithgod.com.
What can churches, schools, friends, family, and the medical community do to better support parents of kids with special needs?
My advice is that people listen to parents. They are special needs advocates and very busy caregivers. They speak up only when the need is pressing. If they come to you, it is important. So listen because parents want listeners. I also encourage people to get involved with families. Live beyond yourself and get to know families and children. Once you leave your comfort zone, you will be blessed. And of course, pray for families.
Tell us about your books.
Without a Word is a memoir of life with Hunter. My prayer books are taken from my journals. They are raw and real, and God uses them with parents who are struggling with God. Prayers of Hope for the Brokenhearted comes from a season of confusion. Prayers for Those Who Grieve was written after our season of grief. My new book, Etched on My Heart: What We Learn and Why We Never Forget goes deeper into the moments when God reveals himself, even when we aren’t aware. It will be released in January of 2013.
Thanks to Jill Kelly
Thank you, Jill Kelly, for visiting DifferentDream.com and for sharing Hunter’s story with us. I was encouraged by what you shared and hope others did, too. Readers, leave a comment about how Jill and Hunter’s story touched your heart or changed your outlook. She would love to hear from you!
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.
by jphilo | May 8, 2012 | Books and Resources, Different Dream, Spiritual Support
Today DifferentDream.com welcomes Jill Kelly for the first of two Q & A special needs parenting sessions. Jill and her husband Jim, former quarterback for the Buffalo Bills, are the parents of three children – Erin, Hunter, and Camyrn. Hunter, their second child and only son, was diagnosed with Krabbe Leukodystrophy as an infant and died when he was eight. In 1997, they founded the Hunter’s Hope Foundation to address the acute need for information and research with respect to Krabbe Disease and related Leukodystrophies.
A few weeks ago, Jill and I spent an hour talking. Today’s post relates what her family learned from Hunter. Tomorrow’s post will be about how they remain active in the special needs community.
Would you share some of your special needs journey with DifferentDream.com readers?
Until and after diagnosis, we didn’t consider Hunter as special needs or handicapped. Because his condition was terminal, we treated him as terminal. It wasn’t until Christ intervened and we put our faith in him that we considered him as living. Early on, we were afraid and desperate. Our education was a continuous learning to let go and to let others come into our lives. Though Jim had an public career, we were a private family until we started sharing Hunter with therapists and caregivers. Everyone gained – Hunter, them, and us. Our girls never saw Hunter as a child with special needs. He was who he was, and they saw beyond the special needs to the person inside.
How did being Hunter’s mom change you? How did he change your family?
God used our one and only son to bring us to his one and only Son. Everything fell into place after that. Hunter had to have everything brought close to him so he could experience it. He taught me to be patient, to stop and be still and take in God’s creation. Most people don’t pay attention to those things or to anything God shows us. So Hunter opened our lives to the gift of life, to the gift of breath. I also learned to hold plans loosely because plans change quickly with a child who has special needs. Hunter taught me how temporary our lives are, how we are being prepared for eternity. He also taught us not to be afraid of death and suffering, but to trust God’s sovereignty because all suffering reveals God’s greater glory.
Jim learned a great deal, too. He recognizes he is not in control. Jim’s a natural leader, so surrendering control wasn’t easy. He now leads from the heart of God. He’s always had a great deal of compassion, but he’s compassionate in a different way now. He’s much more thankful for people, mindful what volunteers give, and appreciative of people.
Our daughters, Erin and Camyrn, learned to be humble and compassionate. They see beyond material things.
Who’s been your greatest support other than God?
My mother. We came to faith together. Her relationship with Hunter was willing, generous, and loving. She’s been an amazing example for me and our daughters. Erin once said, “I love Granny as much as I love you, Mom.” Our girls see her love poured into their lives.
What was the best piece of advice you were given when Hunter was with you?
After we received the diagnosis, my Uncle Mark visited. He said, “Jill, you’ll never know what real love is until you know love through his Son.” I didn’t understand what he meant then, but his words made me want to know. That’s when I started to seek after God.
What encouragement do you have for parents of kids with special needs?
Trust that God’s grace is sufficient in both your darkest valley and your greatest triumph, so persevere. This isn’t the end of the story. The story culminates in no more tears or suffering. Because we know what’s coming, we have hope in the moment.
Share Your Thoughts
Thank you, Jill, for sharing your journey with us. Did her words touch you? Encourage you? Inspire you? If so, leave a comment to encourage Jill. And come back tomorrow to learn about how her family continues to advocate for children with special needs.
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.
by jphilo | May 3, 2012 | Different Dream, Grief, Spiritual Support
In yesterday’s post, guest blogger Scott Newport described his practice of “scooping up things” during a recent trip to the Everglades. The practice began three years ago as a means of coping with his grief after his son Evan died. Today, Scott completes the story by sharing how the compassion of his living son, Noah, allowed him to scoop up a bit of joy.
Scooping Up Things, Part 2
From the Most Irritating No-See-Um
to the Greatness of the Full Moon
When I got home at about 11:00 that night, Noah was still up.
“Hey Dad, did you miss me?”
“Of course son! When I get home from the presentation I have to give tomorrow, I’ll tell you all about my trip.”
Saying good night, I gave him a hug and we both went up the stairs to bed. Even though I’m just a carpenter, on occasion I’m also a presenter for
state-funded training seminars for parents and caregivers of
chronically ill children. Because of Evan, I’m something of an expert
there.
Whispered Fears
Early the next morning, my wife Penni came down the stairs and said,
“Noah told me one his teachers from the middle school was going to
call.”
Immediately I had a bad feeling. Maybe everything Noah has been
through over the last few years—losing Evan—has finally taken its
toll. Maybe he got angry at another kid. Maybe he pushed one of his
buddies. Whispered fears raced through my head.
Penni continued, “She
called yesterday.”
“Well? What did she say?”
“She said that there’s a needy family in the community that’s looking
for a child’s bedroom dresser. Noah told her we have one.”
I Can’t Go in There
In less than a second I knew which dresser Noah had in mind. It was
the one in the bedroom I hardly have the courage to walk into. I give
myself permission to look though the French doors to the intensive care unit
where Evan and all his medical equipment lived. I can’t go in there.
It is still too overwhelming. Evan’s favorite blanket still lies in
his crib—the crib where I found him dead and lifeless.
Penni didn’t say it, but her blue eyes spilled out the love she has
for both her boys. And as she walked away, I knew she loved me too. I
just stood there and held back my tears. I still can’t even talk to my
wife about Evan’s death.
Scooping Up Tears
Later, at the end of the all-day seminar, I got up to give my
presentation. Wiping tears from my eyes, I told the story about Noah
and how he is transitioning through his grief and his life as a young
boy of thirteen. The whole room was in tears with me. I scooped up
each tear-filled smile sent my way.
You see, the things I scoop up
aren’t all minnows and moonbeams—sometimes they are profoundly
painful.
“I could never have given away Evan’s dresser,” I told the group of
people sitting in front of me. “It would have been another loss for me. But because Noah was the one who decided it was okay to give away
the dresser, I was okay with it. That sorta surprised me.”
Scooping Up Pride
On my three-hour drive home, I realized how proud I am of Noah. Like a brilliant, full moon, Noah’s spirit shines brightly. I believe I will
gaze with wonder and appreciation at his life again and again and
again. I’ll probably never give up my scooping up habit—but I bet
that, even years from now, Noah’s gift will stand as one of my best
finds ever.
Thanks, Son.
Do You Need a Moment?
Do you need a moment to scoop up your own tears? Go ahead. Take your time. When you’re done, leave a comment about your thoughts. Think of them as more things for Scott to scoop up as he deals with the loss of his sweet son Evan and rejoices in life with Noah.
Part One
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