by jphilo | May 2, 2012 | Different Dream, Grief, Spiritual Support
Guest blogger Scott Newport recently returned from a trip to Everglades National Park. During the trip, he employed a technique to deal with grief over the loss of his son, Evan. In today’s post, Scott explains how he used the practice of scooping up things during his trip down south.
Scooping Up Things:
From the Most Irritating No-See-Um
to the Greatness of the Full Moon
I just returned from an adventure to the Everglades National Park with
one of my high school buddies. He and I go way back. When we were
sixteen and first got our driver’s licenses, $1.20 would buy
two gallons of gas, just enough to get to his house and back.
Before I left for Florida, I made sure to give my son Noah a big hug
goodbye. This trip was going to be my first real getaway since the
birth of my other son, Evan.
Evan would have been ten this year. Since
I was going to be gone for three days, I wondered if Noah would see my
absence as another loss. I know any time he goes away for the night, I
feel a loss. I think once you have lost a family member, you realize
the unthinkable can come true.
On the flight from Michigan to Florida, Noah continued to be on my
mind. He’s such a great kid, but I often worry if surviving the death
of his younger brother will one day manifest in a negative way. So
far, Noah has turned to positive outlets for coping.
Scooping Up Things
For me, my main survival skill has been what I like to call “scoopin g
up things.” I can make it through each day if I embrace the simple
things in life. With every breath I inhale, I scoop up in my mind what
I think has value. I do this almost unconsciously as I go about my
daily work and routines. And of course, this trip would be no
different—of course I’d be looking for things to scoop up, examine,
and save.
On our first night in the Everglades, my buddy and I camped on an old
Seminole mound fifty miles from the isolated boat ramp from which we’d launched. We saw alligators everywhere, floating silently in the
meandering waterways or sunning their gnarly black bodies on the muddy banks as we motored past. Soaring black vultures circled overhead and long-legged white herons waded in the brackish water. When we stopped to eat lunch, I sat at the back of the boat. While no-see-ums swarmed around my head I searched for anything that may be lurking around the boat.
Scooping Up Beauty
My eyes immediately spotted a family of tiny translucent minnows darted between the roots of the far-reaching arms of the mangroves. With every organ of their thinness exposed, I wondered how long the minnows would live; how long they had been alive.
On shore, ancient lemon and banana trees were visible among the thick foliage, evidence of indigenous families that used to live there. The smell of those trees was something I had never experienced before. Overwhelmed by the process of scooping up these things, I took a deep breath, grabbed my notebook, and started to jot down my thoughts.
Before my trip, I thought that the night sky over the Everglades would
be full of brilliant stars but, in fact, the moon is so bright the
stars are dimmed. On our last night in the Everglades, the full moon
was king, opening a whole new day in the darkness for me to scoop up
my treasures. As we poled my buddy’s flat boat around the spider’s web
of inlets, ripples on the water glistened smoothly as they rose and
fell, radiating away from our boat. We couldn’t see any alligators,
but we heard their midnight rumbling noises resonating for miles.
Scooping Up Words
I felt like my time in the Everglades could provide me with a lifetime
of storytelling material.
After paying three dollars for a much needed shower at the little
store by the boat launch, I said goodbye to my friend and headed for
the airport.
On my flight home, I opened my notebook and gazed again on the
Everglades. The descriptive words and phrases I had written down while
on my buddy’s boat took me back in a flash. My short notes and childlike sketches made me smile and reminisce. I was sure to get a dozen poems out of the scribbles. Even though I took pictures on our adventure, I prefer
words on a page when it comes to sharing my trip with my friends and
family. Words seem to better capture the simple things I scoop up. The
young girls seated next to me must have thought I was nuts as I kept a
silent smile on my face during the whole flight.
Share Your Grief
Though I’ve never been to the Everglades, the images Scott scooped up and shared made me feel like I was there. Tomorrow, he’ll describe how his son Noah helped him scoop up joy enough to bear the grief of his loss for one more day. Scott knows that sharing your feelings is one way of coping with grief. So feel free to leave a comment about the grief you bear and how you deal with it. Remember, you are not alone.
Part Two
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by jphilo | Apr 12, 2012 | Different Dream, Encouragement, Spiritual Support
Yesterday guest blogger Rebekah Benimoff shared her prayers during recent challenges associated with raising two boys with special needs. Her first prayers were for strength after being called for jury duty. In today’s post, she writes about finding strength and praying with gratitude.
A Special Needs Mom Prays for Rest, Part 2
Where Does my Strength Come From?
I reported for jury duty today. While I did not ask to be excused, the assistant district attorney took note of all that is on my plate. He asked me how I manage all of this, and if my extreme circumstances would make it difficult for me to perform this civic duty. I don’t quite know where the answer came from, but it was fluid and clear: I’ve had to deal with many things I never thought I could. I carry difficulties that are beyond my ability to bear. But I know where my strength comes from, and know how to access that strength. I will do whatever I am called on to do.
With deep conviction I say that God is my strength, my comforter, the one who carries me so I can take care of the specially wrapped gifts He’s given me. And He will continue to hold me close as I invite Him in. I choose to stay with Him for the journey.
A Prayer of Thanks
I am thankful – so very thankful for You, Lord. For your presence, for your provision, for Your ever present protection. I think of how I pray every night over my boys, asking you will protect them, and there are moments Lord, even weeks, where, despite the chaos, I can clearly see your hand, your urging, your great love for us.
Thank you not just for all you do, but for who you are.
Love,
Rebekah
Where Do You Find Strength?
Raising children with special needs, even without being called for jury duty, requires a great deal of strength. How do you pray for strength? And what reasons have you found to be grateful in the midst of challenges? Share your experience and wisdom in the comment box.
Part One
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by jphilo | Apr 11, 2012 | Different Dream, Encouragement, Spiritual Support
The task of raising a child with special needs is a series of ups and downs, hope and despair, joy and challenge. Guest blogger Rebekah Benimoff and her family recently went through a challenging time that left her praying for rest.
A Special Needs Mom Prays for Rest, Part 1
Prayer
Father God, it has been a rough few weeks. This month has not started out with a bang, but rather a deluge. Medical issues, illnesses, diabetes complications, and the death of a good friend. Each difficult to deal with on its own, but combined together…. I am left feeling depleted. Wanting to restore balance, but not knowing quite how to reach for it. With all the medical diagnoses we deal with – Asperger’s Syndrome, SPD, Type 1 diabetes, celiac disease and PTSD – a normal” month leaves me tired. Throw in an ER visit, the beginning of another grieving process, and a week later a frantic 911 call – for a diabetes related seizure – and I am feeling stretched, to say the least. I long to simply be.
Yet I am also filled with gratitude. I am so very thankful that despite some close calls, Tyler is still with us. I am thankful that my friend is with Jesus, no longer struggling with so many medical issues and complications, no longer in consistent pain. Still, I will miss her. I am grateful for moments of quiet, the gift of a day to stay in our pajamas and just be together as a family (while watching blood glucose levels carefully and doing the extra post-emergency diabetes care. I am grateful for friends and family who’ve reach out to me with prayers and messages of support in these last weeks. I am grateful to have a quiet weekend to rest and recover…
Recovery
In times like these, there is a recovery period. We watch over Tyler more carefully than usual, checking blood glucose levels every two hours throughout the day and night for a couple days. We step out of extra activities because it is important to take time to recover. I am reminded of various lessons in self-care for the caregiver. Where there is less sleep, there is the opportunity to seek rest emotionally and spiritually. When the crisis has passed, I have a choice. I’ve learned what restores me in body, spirit, and soul, and I make this a priority. I know that I take better care of those I love when I take care of myself. So I make sure that what I choose to pour my depleted stores of energy into reflects these needs.
This weekend an emotional need was filled by quiet moments with my husband and my boys. We took time to come together as a family in the peace of a day at home together. It was a time to unwind together, to rest together, and recover as a family from our ordeal. To simply be together, and invest in the precious gifts we have in each other. I also had a need for physical rest. A nap did a lot more for me than hours of unwinding in front of the TV would have done. I chose to refill, and refuel. It takes some time to come back to a place of rest, but in quietness and rest I connect with God and my family, and I find a road towards recovery…
How Do You Pray When You Need Rest?
Does Rebekah’s story resonate with you? How do you pray when you need rest? Share your thoughts in the comment box, and come back tomorrow for the rest of Rebekah’s story about where she finds strength in her weakness.
Part Two
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by jphilo | Apr 6, 2012 | Different Dream, Encouragement, Spiritual Support
A few weekends ago, I caught a nasty cold and lost my voice. I was hoarse on Sunday morning and so attached to the tissue box, going to church was out of the question. Which explains why I happened to be listening to Krista Tippet’s public radio show On Being instead of listening to our pastor’s sermon.
Meet Kevin Kling
I was bummed about missing church and not too excited about the radio show until Kevin Kling’s familiar voice came on. He’s one of my favorite storytellers with his irrepressible humor and his heavy Minnesota accent. His stories radiate childlike joy and wonder, but I couldn’t figure out why he was on the show. So I kept listening.
Kevin Kling and Disability
Turns out, Kevin Kling was born with a one arm shorter than the other. That didn’t slow him down, but a terrible motorcycle accident in 2002 did. He recovered from the accident after nearly dying (he had an after death experience), but his good arm was paralyzed. His perspective on life changed.
Kevin Kling’s Perspective on Life
Kevin Kling still writes, performs, and laughs. But his accident, his near death experience, and post-traumatic stress disorder (PTSD) changed his perspective. In the interview, he shares how he’s changed, what he’s learned, and why he still laughs more than he cries. To listen to the interview go to the On Loss and Laughter link at On Being. Right below the picture, click on “listen now.”
Just to be clear, I’m not endorsing Kling’s theology. He doesn’t explain it fully enough in the interview for anyone to do that, and I haven’t read his books to explore them further. But he has some very profound insights about disability, grief, loss, and laughter that deeply resonated with me.
Have a Listen and Come Back
After you listen to the program, come on back and leave a comment. What resonated with you? What surprised you? What made you laugh? What made you see disability differently than you saw it before? I’m eager to hear what you have to say.
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 | Apr 3, 2012 | Different Dream, Grief, Spiritual Support
Welcome to Gillian Marchenko, the newest guest blogger at DifferentDream.com. To see what Gillian looks like, visit our guest blogger page and scroll down until her smiling face and bio comes into view. To launch her presence here, she uses a lovely metaphor of darkness and light to describe how she grew to accept and love her daughter who lives with Down syndrome.
Darkness and Light
My two oldest daughters and I are at a museum. We see several exhibits: a man-made tornado, a 1950s coal mine, and Christmas trees from around the world. But we find ourselves most engaged standing in front of a warming space enclosed with plexiglass, watching a baby chick hatch from her egg. “Mom, look! The egg is going to hatch!” my ten-year-old squeals. Both girls scoot in front of a few adults for a better view.
The egg tips and rolls, and we ooh and aah like we are watching fireworks. It cracks, and we become midwives, urging the chick to emerge. Come on, baby! Come and meet the world! Soon, there is a hole and a pale, pointed beak connected to a scrawny, wet head pushes through. What a beautiful way to be born, I think, in warmth and safety, under a light as bright as the sun.
Five years ago, our third daughter was born. Her experience was polar opposite from the chick’s. She came three weeks early via emergency caesarean section beneath icy, iridescent lights while I was under anesthesia and my husband paced the waiting room. Right away, there was a suspicion of Down syndrome. A blood test confirmed the diagnosis days later, thus catapulting me into a cavernous grief over the loss of the daughter I expected.
At the museum the chick slips out of the egg, surprised and slack, and looks around.
I spent the first year of Polly’s life depressed. “When will I stop feeling like this? When will I love my child?” My life had been eclipsed. I was in darkness.
“Be patient. Give yourself time. Let the baby change you,” friends said. “One day you will love your child fiercely. You will wonder how you ever felt differently. God has given you a gift in your daughter.” I tried to heed their advice. Deep down, though, I thought perhaps God had shifted my life like a shadow.
Polly is now five years old. She tells knock-knock jokes and loves to bat at T-ball. She creates imaginary worlds upstairs with her sisters during long, rainy days at home. As soon as she could smile she lit up the darkness inside me. She is a daily reminder of God’s love and care for me. He gave me the daughter I didn’t know I needed, to understand more deeply his bright love for me.
If only I could go back in time and have a do over. I want to go to the hospital and hold myself as the frightened mother. “It’s OK. You’re going to love her. I promise.” I want to talk softly to the lady hiding from her life. “Hold your baby close. Don’t worry.” I missed so many tender moments in my grief.
But I cannot discount the beginning of our story together. I believe the purpose of darkness is partly for me to appreciate the light.
At night, Polly likes it when I sing to her before she falls asleep. I put my head against hers, and gently stroke her thick ash hair with my fingers. You are my sunshine, my only sunshine. You make me happy when skies are gray. I stop for a moment to clear my throat.
“Mom, more…” Polly urges. “More.”
My daughter is a walking, breathing metaphor of the importance of darkness and light. You’ll never know dear, how much I love you. Please don’t take my sunshine away.
Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.
James 1:16-18
~ Gillian
Darkness and Light in Your Life
Thank you, Gillian, for so transparently sharing your struggles during the first year of Polly’s light. Thank you for assuring other parents their darkness can change into light. Thanks to those of you who want to leave a comment about how you left the shadows of uncertain love behind you. To hear more of Gillian’s story, go to www.GillianMarchenko.com.
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 | Mar 21, 2012 | Different Dream, Encouragement, Spiritual Support
March 21 is Down Syndrome Awareness Day. In honor of the occasion, guest blogger Ellen Stumbo shares a post about how Down syndrome has made her more aware of the love her daughters have for one another.
So Full of Love: Siblings and Down Syndrome
“Mom, sometimes, when I look at Nichole she is so cute that I feel like crying because my heart is so full of love.”
There are times I look at my children and I feel like crying because of the intense love I feel for them. It is a love so hard to contain that it spills out in tears. I get this feeling, I am a mom. However, coming out of the mouth of Ellie, my 6-year-old daughter, it surprised me. It made me realize how uncommon this is, and how perfect these 2 girls are for each other.
When Nichole was born with Down syndrome, one of the hardest dreams I had to let go of was the type of relationship I envisioned my girls having. They are only 25 months apart, and I had great plans for them. They would be best friends forever. Because of Nichole’s Down syndrome, I wrongly assumed their relationship would not be close.
They Are Not Playmates
They do play together, but mostly, Ellie adapts to Nichole. Often, Ellie gets frustrated with Nichole stealing her toys and running wild throughout the house or dangling Ellie’s dearest Rapunzel by the hair. Nichole has a thing for yelling at Ellie in order to get her attention, which is not necessary, but rather bothersome. It is true that my girls are not the best playmates; however, they are closer than anything I could have imagined.
They Are Sisters
Every morning, they sit together on the couch as they watch a show before getting ready to begin the day. At school, Ellie hugs Nichole before they part to their respective classrooms, and if they see each other throughout the day, they try to get another hug. When I pick up the girls form school and we arrive home, Nichole runs to Ellie for more hugs. If Ellie picks up a book, Nichole nestles herself close to Ellie in order to listen to the stories and look at the pictures with her big sister. If Ellie jumps, Nichole jumps. If Ellie laughs, Nichole laughs. If Ellie dances, Nichole does too. If Ellie cries, Nichole runs to her side for a hug, a pat on the back, and gently strokes Ellie’s hair until her big sister stops crying.
I am amazed at the ways in which Nichole has molded Ellie’s heart. A heart that is full of compassion, acceptance, and gentleness. I see it in the way Ellie loves and treats others, or the way she loves her little sister. In turn, Ellie molds Nichole as she teaches her by example.
There Is So Much Love
This relationship they have, even this young, is simply incredible. The love they have for each other is a love that surpasses any expectations I had. It is the love that drives a 6-year-old to “get it” in a way that few children her age could even grasp, including some adults.
So I sit back and marvel about this love we live with, this vast love we get to experience. I worried so much about what the extra chromosome would do to my daughters’ relationship, but I had nothing to worry about, because there is so much love.
Ellen Stumbo
Leave a Comment
Hopefully, you’ve observed special needs having a positive impact upon your children’s relationships. Realistically, perhaps you’ve observed some negative effects, too. Positive or negative, feel free to leave a comment about how your family’s special needs journey is impacting siblings.
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.
