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.
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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 2, 2012 | Church Newsletter Columns
Everyone who comes to me and hears my words and does them,
I will show you what he is like:
he is like a man building a house,
who dug deep and laid the foundation on the rock.
Luke 6:47-48
A few days ago, Hiram and I made a quick, midweek trip to Wisconsin to see our son and his wife. The weather was gorgeous, so while the young folk were at work, we explored winding country roads we usually passed by in a hurry. Finally, we had time to investigate the “scenic overlook” mentioned on cryptic road signs ignored during other visits. We parked the car and followed the path, expecting to see a lovely valley complete with a sparkling river, and perhaps one of the large mounds scattered throughout southwest Wisconsin.
Instead, in the distance we could see the famous House on the Rock clinging to the side of a limestone cliff. While I snapped several photos of this feat of engineering, something my dad used to say came to mind. It’s a nice place to visit, but I wouldn’t want to live there.
We hiked back to the car and the the sight-seeing road again. But I kept thinking about the House on the Rock as a metaphor for our lives since Hiram left work early because of back pain in late May. One day he was training for a half- marathon. The next day, the pain was so bad, he couldn’t walk. He spent two weeks in bed. He followed the doctor’s orders and waited for the pain to ease. It didn’t get better, so it was back to the doctor for tests, more waiting for results, then a diagnosis, a referral to a neurosurgeon, and finally successful back surgery.
In the weeks leading up to the diagnosis and surgery, we prayed a lot. We talked a lot. We sat on the edge of our own persona cliff, peering into the unknown and asking God plenty of questions:
Why are you doing this, God?
Will Hiram have to live with this pain the rest of his life?
Will he be able to work again?
Be physically active again?
Should I look for a teaching job?
How will You bring good out of our family’s pain and sickness and unwanted change?
The night before surgery, Hiram said, “I’m ready for whatever the outcome is. Whatever happens, it will be good.”
When he said those words, we didn’t know the surgery would be successful. We were still sitting on the edge of the cliff. We were still peering into the unknown. But in those weeks of uncertainty we learned to cling to the promises and goodness of God. The more we did, the more the Rock beneath our precariously placed feet stood firm.
Immovable.
Unchanging.
Ever present.
Through it all, God impressed upon us a precious truth. Our cliff was not a fun place to visit, but upon the firm foundation of the Rock of Ages was and is the best place to live.
by jphilo | Mar 7, 2012 | Books and Resources, Different Dream, Spiritual Support
Peter and Amy Julia Becker weren’t expecting a special needs diagnosis after the birth of their first child. When the doctor said he suspected their daughter Penny had Down syndrome, Amy’s life and her expectations for her daughter changed.
A Good and Perfect Gift: A Mother’s Memoir
A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny is Amy Julia Becker’s memoir about the first three years of her journey as the parent of a child with special needs. Becker describes the grief she experienced after the diagnosis. She details her reluctance acceptance of her role as Down syndrome advocate and expert, as well as her anger and frustration with the responses of well-meaning, uninformed friends and acquaintances.
Questions Pondered
The book also provides an accounting of the faith questions that plagued Becker during her daughter’s first months and years. Was Penny’s Down syndrome caused in part by Becker’s struggle with eating disorders in high school? Would her faith be strengthened or broken by this special needs diagnosis? Was God in control? Did Penny’s Down syndrome make her less perfect than other people? The author honestly recounts her thought processes, tracing her changing perspectives as she sought answers.
Beautiful Writing and Quiet, Intelligent Faith
Clear, beautiful prose mark this memoir. Becker writes transparently, sharing her doubts and feelings without becoming overly emotional or sentimental. She presents her faith quietly and intelligently, never shying away from complex theological dilemmas. She accomplishes this without being preachy or self-righteous. In fact, humility and brokenness pervade the pages of this memoir.
Thank You, Amy Julia Becker
I am thankful someone recommended Becker’s book to me. It is, perhaps, the best special needs parenting memoir I have read in either the Christian or general market. I will recommend A Good and Perfect Gift to friends whatever their faith affiliation may be. In fact, if you haven’t read it yet, I recommend you do so as soon as you can. If you have read it, what did you think of the book. Leave a comment about your response to Amy Julia Becker’s memoir about being the parent of a child with special needs, A Good and Perfect Gift.
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 | Feb 17, 2012 | Different Dream, Encouragement, Spiritual Support
Guest blogger Rebekah Benimoff is back today to complete this series about special needs lessons she’s learned in the midst of chaos. Today she writes about clinging to faith in the midst of a couple chaotic days with her son who has juvenile diabetes. Read on to see if it’s a lesson you learned or are learning in your life, too.
Belief in the Midst of Chaos
Having been in ministry for as long as I can remember, I am used to being the one serving. As a chaplain’s wife, I’ve lifted up many families in similar situations. Yet I am often reminded that we never outgrow the need to be ministered to- no matter where we are in life. It is incredibly valuable to learn to receive. Before saying good-bye, the chaplain shared that it was so good to be paged to visit a family who was getting better. She was blessed by serving, just as we were blessed by receiving.
There were many others who saw to our needs today, many reminders that God is with us. Roger’s chaplain friends stopped by. One stayed with Tyler while the other took me in search of gluten free options for Tyler who’d been cleared to try some food. She helped me carry my son’s needs and supplies and reminded me to see to my own hunger needs, as well. I was never so thankful for a breakfast taco! Prayers streamed in and the staff was more attentive than I could ever have asked for.
At the end of a long, tiring day, we headed home, weary but grateful. Quite ready to continue recovery from the comfort of home. In the mirror, I caught a glimpse of the shirt I had thrown on this morning in the dark.
Purple with little silver sparkles that spelled out B-E-L-I-E-V-E.
What I do believe? I believe that God was with us every moment, holding me and my precious boy. I believe He directed the staff with His wisdom, and that He sent many to minister to a troubled mother’s heart. And I believe that sometimes it is quite blessed to receive!
My prayer is that in the chaos that life throws our way, we will learn how to better receive from the heart of God and the hands and feet He sends our way!
Blessings,
~Rebekah
Part 1
Part 2
Lesson Three Complete
I don’t know about you, but God has to remind me often, especially in the hard times, that he’s with me and those I love. I know it’s true, but sometimes it is so hard to believe. How When you’re in the midst of chaos, how do you hang on to what you believe about God? What special needs lessons have you learned? Leave a comment so we can learn 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 | Dec 28, 2011 | Different Dream, Self-Care and Stress, Special Needs Parenting
Yesterday, guest blogger Nancy Flanders talked about two issues parents of kids with special needs should consider when thinking about expanding their families – level of support and finances. Today, she shares four more issues to help parents wondering about having more children gain clarity about their family’s future.
On Having More Children, Part 2
#3 – How’s Your Faith?
How is your faith? Seriously, faith matters. For those with faith, special needs aren’t a curse, but part of a plan. God doesn’t wish for us, especially children, to suffer. It breaks His heart too. But He finds use for our suffering, as in John 9 when the disciples ask Jesus why the man was born blind. Jesus answers, “this happened so that the works of God might be displayed in him.” We know that we as parents aren’t choosing to have a child with a special need. We are choosing to have a child. This is a gift, no matter what the future holds. We must have faith in order to survive. And your level of faith will make a difference in whether or not you could handle having another child with a special need.
#4 – How Does Your Spouse Feel?
How does your spouse feel? This is obviously important and should not be overlooked. Planning another baby on purpose when your spouse isn’t ready or is uncertain is a bad idea. You should talk to each other and listen to each other openly and honestly before making the decision.
#5 – Are You Afraid?
Are you afraid? We are all anxious at times when wondering how our decisions will affect the rest of our lives and the lives of others. But you shouldn’t let fear be the reason you make a decision. Logic and reason, trust and love should play a part. Fear should never win.
#6 – What About Adoption?
What about adoption? You don’t just have to add to your family biologically. There are thousands of children waiting for a home, and more are born every day. But this is just as big a step as having a baby and all of the above considerations must be taken into account.
Only Time Will Tell
There are plenty of other considerations when deciding if you should have another child who might have a special health need including your living arrangements and your ability to give attention to each child. But for each setback, there is a solution. You just need to be willing to find it. It all comes down to what is best for you and your family. As for mine, only time will tell.
What Would You Add to the List?
What do you think of Nancy’s list of things to consider about having more children? Does one of the items speak to you? Do you have more considerations to add to the list? Leave a comment to share your wisdom. Nancy and I would love to hear from you.
Nancy Flanders is a wife and mother of two girls, one with cystic fibrosis. After her daughter’s diagnosis at just 6 days old, she altered her career path to focus on writing about raising a child with a special health need. She spends any free moment she can find fundraising for a cure for her daughter and volunteering for her hospital’s cystic fibrosis advisory group. Visit Nancy at www.chronicadmissions.blogspot.com and www.parentingsquad.com.
Part One
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