by jphilo | Oct 20, 2011 | Different Dream, Grief, Spiritual Support
October is Down Syndrome Awareness Month. So guest blogger Ellen Stumbo chose to write this two part series to describe what it was like to learn her second child would live with Down syndrome. Today, Ellen shares her initial reaction.
Down Syndrome Awareness: A Different Road, Part 1
I stood in the middle of a vast clearing. The breeze was gentle as it stroked my face, and the air carried the sweet aroma of wild flowers. The sun delivered beautiful golden rays that pierced their way through cotton clouds and gently touched the horizon. There I was, eagerly waiting for the glorious moment when I would get to take my first step into the beautiful road that lay in front of me. The road that was full of everlasting rewards. A road that held so many of my dreams, my hopes, and my ambitions. One that promised so much joy, beauty, and love; it was inviting me to come, to enjoy, and to discover. The road of parenting.
The gate at the head of the road looked like it came from the land of fairies. Its arch covered with lavishing vines that entwined forming intricate patterns. Dozens of flowers decorated the gateway as it welcomed its travelers. Down the road, strong oak trees provided shade for parents to get their much-needed rest and gather their strength. There were rocking chairs scattered throughout the road occupied by women whose lips whispered lullabies to their sleepy little ones. Fathers beamed with pride as they carried their children and lifted them up over their shoulders for all to admire. As far as I could see, flowers of all sizes, shapes, and colors paved the way. Their delicate scent had made its way to the gate opening. The songs of birds were a perfect symphony that invited all to sing. I could hear cheers and applause as children reached milestones and continued to walk farther down the road, into toddlerhood, childhood, and adolescence.
I watched as other parents took their first steps. Some were clumsy, some were nervous, and some were anxious. Some parents were experienced, having walked this road before. Some giggled, some cried. The excitement and wonder of welcoming a new life was contagious. The babies that they held close and tight, had captured their hearts, and changed their lives forever.
I was next in line. My turn was finally here. I stood at the gate with full confidence, ready to take that first step. My eyes fixed on the road ahead. The anticipation hard to contain. My determination and desire were almost tangible…
A gentle tap on my shoulder.
I turned around and next to me stood God.
“Child,” He said softly, “This is not the road you will travel.”
I was startled, confused. He gently took me by the hand and led me to the opening of a different road. I had noticed other roads at the clearing, but I had not paid attention to any of them. These other roads were not often traveled; they seemed lonely and rough.
“This one is for you,” God said.
My heart sank. This was not what I was expecting; it was not part of the plan, my plan. For there, before me, stretched a dark and gloomy road. The path was covered with thick and deep mud. There were decaying trees along the side whose branches hung low and heavily over the trail. The gray air was murky and suffocating. Slimy vines hung like a heavy curtain ready to trap all those who dared travel by. I could only imagine what other horrible sights awaited in the distance, for I could only see so far.
“Lord,” I dared to say, full of fear and anguish, “I believe this is a mistake.”
He smiled, looked me tenderly in the eye and whispered, “Sweet child, I don’t make mistakes.”
With tears, I took the first step into the road labeled, “Down syndrome.” Soon my tears were flowing. The mud of the “characteristic physical features” was thick. It was hard to walk, hard to lift my feet. There were places where I thought I would get stuck, or that the mud would drag me down and swallow me altogether. All the low hanging branches were different medical and physical problems. I was not able to avoid the cardiac and GI branches; I had to work my way around them. The air of intellectual disability made it almost impossible to breath, its derogatory term “retarded” was noxious. And the vines, they were everywhere! They were all the comments, the doctors, the looks, the whispers, the endless questioning, and my own thoughts.
I glanced back. I wanted to look at those traveling the beautiful road I had longed to travel. The one I had chosen. I saw the smiling faces and the many people walking through the gate. Oh, the beautiful sight! But that was not where my feet were standing. Here I was, trapped in an ugly prison. I wanted to get out. I was not supposed to be here!
Did You Feel Like Ellen?
Did Ellen capture the emotions you felt when your child was diagnosed? What would you add to what she wrote? Leave a comment if you like, and come back tomorrow to see how Ellen’s view of the road ahead changed.
Part Two
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by jphilo | Sep 13, 2011 | Different Dream, Grief, Spiritual Support
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.
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 | Aug 29, 2011 | Different Dream, Grief, Spiritual Support
Once again, it’s my pleasure to introduce a new guest blogger, Rebekah Benimoff. In today’s post, she shares the story of how her family’s special needs adventure began. Though your child’s story may be different than her son’s juvenile diabetes diagnosis, I think you’ll identify with how she and her family responded.
A Juvenile Diabetes Diagnosis, Part 1
It began with rapid weight loss. Tyler dropped from a 4T, to a 2. A boy who was already small for his age began to look anorexic. When he started going to the bathroom every few minutes, I called my mom since my husband was deployed. “Do you think it could be a bladder infection?” She suggested that it might be diabetes, and I simply could not take that in. I took Tyler to our doctor and shared what was happening. Within minutes I had the shock of my life. There were massive amounts of sugar in his urine.
We were sent to the hospital and the next days were a blur of shock, fear, and information overload. The Red Cross flew my husband home, and we struggled to cope. Tyler would dissolve into screams each time he had to have a shot. Desperately he would cry out for me to stop the doctors and nurses who were trying to keep him alive. I could only watch, feeling helpless and overwhelmed. The first week was a nightmare, and the next year was not much better. My husband returned to complete the military mission, and I was left to care for a little boy who hated needles and was having diabetic seizures due largely to a doctor who over-medicated—an attempt force Tyler to gain weight. Tyler figured out that when he ate, he got a shot. So he decided he’d simply stop eating.
Moving Forward
A year later we found a better endocrinologist, and Tyler began to stabilize–just in time for Roger to deploy again, this time to Iraq. I had little time to do much other than survive. During Roger’s second deployment to Iraq, Tyler started kindergarten, and I began to work through an inner healing study. I discovered that I needed to work through quite a few issues related to the trauma of Tyler’s diagnosis, and the year that followed.
Fear
I lived in fear that Tyler would die. He was still having seizures and low blood glucose episodes, even after we had a doctor that listened to my concerns. Tyler’s body was still producing some insulin, so stabilizing blood glucose levels was a shot in the dark. Even after the “honeymoon phase” ended, and all of the cells that create insulin had finally been killed off (by his own body), Tyler was super sensitive to insulin. We were referred to the nationally renowned Barbara Davis Center for Pediatric Diabetes and Research, and had a wonderful support system, but I lived in terror that I would lose my son- if not now, then surely later. After much prayer, I came to the place of surrender. I pictured myself placing Tyler on the altar, much like Abraham did with Isaac, and I released my little boy to God. I still go back to the altar now, every time fear creeps back in.
Forgiveness
I had a lot of work to do in the area of forgiveness. Many hours were spent praying over specific offenses related to the saga of diabetes—especially that first traumatic year. I had to forgive the doctor whose tactics caused Tyler’s seizures and low blood glucose episodes. I had to forgive myself for listening to the medical personnel, and not knowing better sooner. And I had to forgive God for allowing this disease to alter our reality.
Grief
When Tyler received his juvenile diabetes diagnosis, I did not grieve the loss of my dream for him to have a normal childhood. Later I realized I needed to work though that loss. About the time I freed myself to face the issues, my husband returned from Iraq with PTSD. So the process of working through all the issues has had some stops and starts as other, more pressing matters have had to be dealt with. In the last year or so, I’ve been able to work through much of my grief regarding parenting children with special issues, as we continue to adjust to life with a husband/dad who has a brain injury. It is a process.
I am realizing that Tyler, too, needs to grieve, in his own natural way, and that listening is really the best way to help him work through his feelings.
Sound Familiar?
Does Rebekah’s story sound familiar to you? Leave a comment about the emotions you experienced when your child was diagnosed. And come back tomorrow for Part 2 of this series, and hear about Tyler’s reaction to his juvenile diabetes diagnosis.
Part Two
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by jphilo | Aug 11, 2011 | Different Dream, Grief, Spiritual Support
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.
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 | Jul 1, 2011 | Different Dream, Grief, Spiritual Support
Independence Day 2011 is just around the corner. In honor of the holiday, guest blogger Scott Newport shares some memories from last year’s Fourth of July.
Old Planks
Over the Fourth of July I went by a small, roadside flea market looking for old hardware for some of my wood projects. Occasionally at these fine venues I will find the perfect handle for a small box I have built. This was not going to be the case this time, but just before I walked out I looked up in the rafters of the old warehouse and saw a piece of wood peeking out at me. It was covered in dust and held in place by other twisted boards, a couple of strips of plywood and one old metal bed frame.
I found a rickety, wooden stepladder leaning against a marred post and dragged it over to the edge of the mezzanine. As I unfolded the A-frame ladder I wasn’t sure if what I was doing was going to be safe. The ladder reminded me of one I had been up on a few years back. An elderly neighbor had asked me to check her roof and told me there was a ladder in the garage. “Hey Scott,” she yelled from the side door, “Don’t worry, my husband bought that at Sears before he died. It’s really made well.”
I soon found myself on the third creaking step and figured it was now or never. Actually, never started to ravage my mind and the only, now part was, “If I take one more step I’m surely going to fall and break my neck.” Luckily my brother-in-law was with me, and he also started to get excited about the board. He told me not to move, and he would maneuver his way through the plies of “sale” items and try to push the board from the other side. After about five minutes of reorganizing the heap of stuff, together we were able to release the piece from its irons.
“How much for the board?” I gasped, now out of breath and heating up from the summer’s day.
“What about four dollars?” shimmered out the elderly man’s voice.
His wife, who looked to be about eighty-five said, “We may have some more boards like that buried in the trailer next door.”
I couldn’t help but laugh to myself as I started climbing down. The expressions on the old couple’ss faces were the same. Their wrinkled faces each were in competition to be the first to say, “See honey, I knew someone would buy that.”
It was also funny as the other patrons of the roadside shopping had glares like, “You gotta be kidding, what in the world would anyone do with that ugly piece of wood?”
My brother-in-law, still excited himself, pointed out another piece of rough-sawed wood, and I was out another four dollars. I dug out eight, single crumpled dollars out of my wallet and handed it to the cashier. My brother-in-law told me later she was the couple’s daughter.
We found some old twine in a crumpled, metal box the ol’ man pointed to and soon had the wood tied to the top of the car and headed back to my folks’ summer home.
When we pulled up into the driveway I was happy to see that Penni and Noah were not there but down at the beach. I was sure if she would have seen us she would have given me some grief about potentially damaging her car.
When she returned she never said a word about the wood. I figured she knew what a tough time I was having over the last couple of days. You see this is the first Fourth of July at Lake Michigan we didn’t have Evan with us. Even though she never said it, I knew she must be feeling the same way, too.
The two, eight foot planks made the 180 mile trip back to our home and by the next weekend I had beautiful plans in my head for the pine boards. I ended up needing a small stretch of redwood to finish the project.
In the end, I was able to build two benches out of one of the planks; one bench smaller than the other. Since the wood had a few nasty knots in it, four of the legs had to be shortened.
So really now I have a child and an adult size bench.
As you may know one of my missions in life is to teach folks about damaged unwanted goods, kinda like some of our children with disabilities. Evan sure had his imperfections, but I always seemed to look past them and focused on his beauty.
I know some people don’t see it that way, I guess I am just lucky or God has given me the gift to see the beauty in things like that old dusty plank, the one covered up in the attic, hidden away, seemingly worthless.
Where Have You Found Value?
As Evan’s dad, Scott learned to see value and beauty in old planks others found worthless. How has your experience with kids who have special needs made a difference in how you perceive worth? If you like, leave a comment to share what you now find beautiful.
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 | Jun 24, 2011 | Different Dream, Grief, Spiritual Support
How to Cope with Special Needs Grief
Today’s post by guest blogger Laurie Wallin addresses an issue parents of kids with special needs face every single day. Grieving the family life they will never have. And she gives some practical advice about how to deal with special needs grief. Read on!
How to Cope with Special Needs Grief
Recently I left my life of raising special needs kids for 3 days of complete relaxation. I visited my mom in Arizona and enjoyed meals out, sleeping in, and lots of shopping (sans racing from the premises with tantruming 8-year old). It was a delight.
But of course all things must end. Including the good stuff. Coming back from a time away from my older two girls, whose adoption-inspired attachment struggles still rage, is not an easy thing.
As I walked from the airplane arrival gate to the baggage claim, the stress I’d left behind on my trip caught up with me. And I realized that I needed to do a little intentional grieving before I went home to my “normal” life. Not because I’d had a major loss, but because as a parent of special needs kids, I know that managing the small losses and changes makes me a healthier mom for them.
How to Grieve the Daily Stuff Well
Grief has stages, and they don’t flow linearly. We bounce all over the place, staying in one for a time, then moving through others… then back again. The following is an excerpt from a post I did on grief on my blog last year. Considering grief comes up for us all periodically, here’s what everyday grief might look like:
“This is NOT happening!” (aka Denial): It’s okay to ignore it for a little while. It’s just too heavy to deal with special needs grief every day. Sometimes I freak out about finances, and I earn bank fees for neglecting to pay bills on time. Or binge on Grey’s Anatomy for 3 hours after intense mood or behavior days with my older girls. But I give trusted people veto power over my head-in-the-sand moments, so they don’t add more stress.
“What did I do to deserve this?! This sucks!” (aka Anger): Loss creates raw rage at times. The patched holes in my bedroom walls attest to that. I did, eventually, get tired of patching holes, so I joined a gym. Now I punch a big bag, run like crazy on the treadmill, and lift weights until I can barely move. I also write through my anger—with big, dark, ugly words—so my feelings can air out, and my relationships can survive. (And I bought giant Incredible Hulk padded fists to punch the walls, in case I still need that some days…)
“Maybe if I volunteer at my kids’ school 20 hours a week, my life will _______.” (aka Bargaining): We need to feel some sense of control and normalcy in the midst of our grief. So we try to make deals with the universe and God. Some bargains are helpful (“If I sign up to take one meal to a family in crisis, I will feel like a capable person again.”) Some aren’t (“If I tirelessly, perfectly implement all therapies the doctor recommended, my child will become normal.”) When I choose the meal, I have dignity again. When I choose perfectionism, I head straight back to anger…
“Yes, I’m still in my pajamas… from yesterday.” “Please pass the death-by-chocolate ice cream.” (aka Depression): I’ve been struggling with this one for the past month, thus the intense posts. Depression is the part we imagine when we think of grief—the sadness, hopelessness, or helplessness that feels like it will overtake us. In those moments, I am extra kind to myself. I cut out multi-tasking (because it’s going to self-destruct anyway). I drink more water. Go for walks. Take a nap when I can. Pet my dog. Take a day off from life to watch movies and snuggle, which the kids know as PJ day. When we let our bodies have down time, and there isn’t any underlying medical condition, we become quieter. Which moves us toward…
“You’re a spaz, but you’re my spaz, and I wouldn’t have it any other way.” (aka Acceptance): Here’s where the healing feels real. Is life still frustrating? Yes. Nearly impossible half the time? Yes. But I’m still smiling now. And I can love my kids through their 3-hour meltdowns, ignore my dirty dishes, forgive the check-out lady for her naive comment on my parenting, and basically feel good about myself through it all. It’s where I write a letter to the kid I dreamed of, complaining about the one I actually got… and end up crumpling it up and tossing it. Because I realize I’m in love with my real-life wierdo.
What things do you find helpful in seasons of special needs grief? I’d love to hear your ideas.
Leave a Comment
Please leave a comment about how you handle your every-day special needs grief.
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.
Laurie is the mom of four daughters–two adopted with developmental delays, mood disorders, and ADHD. A former junior high teacher turned speaker and life coach, she loves to learn, laugh until their sides hurt, and help women be courageous in life.
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