by jphilo | Oct 31, 2011 | Different Dream, Encouragement, Spiritual Support
Guest blogger Kathy Guzzo is back. Today and tomorrow, she writes about special needs anxiety, an emotion common to parents like us. As always, her perspective as the parent of an adult child with medical special needs gives those raising young children hope.
From Special Needs Anxiety to Pride: A Mother’s Marathon, Pt 1
Have you ever considered running a marathon or do you know anyone that has ever run a marathon? Prior to this year I would’ve answered ‘no’ to both those questions. Although two of my daughters ran track and cross-country in high school, they didn’t get the desire from me. I always said the only time I would run is if someone or something was chasing me.
The Requirements and Improbability of Running a Marathon
Running a marathon takes immense dedication, training and stamina. Most healthy adults are unable to accomplish this feat even if they try. That’s why when our 27-year-old daughter, who has suffered with many complications of lupus and Epstein Barr Replication, signed up to run this year’s Chicago Marathon on October 9, 2011, my first thought was, “What is she thinking?” After all, for the past 10 years she has needed extra rest, fainted several times without really exerting herself and dehydrates extremely quickly.
Thinking Through The Situation
Luckily I wasn’t talking with her when I found out, so I had time to rethink my reaction and try to look at this major endeavor from her point of view. She was very athletic prior to her illness. Her degree is as an athletic trainer, and she’s been training college and even a few professional athletes for 4 years. So she is well aware of all that’s required to be able to run a marathon. I also realize all she’s given up in her life, both small and large, because of her illness. Yet, it was when I thought about all those that would tell her she was crazy to try, that it may possibly exacerbate her illness to a critical stage requiring months to recuperate, that I decided to be her biggest supporter just as I did all our children when they made a decision to do something.
Share Your Reaction
I think Kathy’s daughter takes after her mother. They’re both incredibly brave women. What’s your reaction to her daughter’s goal and Kathy’s response? Could you let go of special needs anxiety like Kathy did? Leave a comment to share your thoughts. And come back tomorrow for Part 2 of Kathy’s story.
Part Two
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by jphilo | Oct 25, 2011 | Different Dream, Encouragement, Spiritual Support
Are You Letting Perfectionism Kill Your Confidence?
Whoa, that’s one loaded question! Exactly the kind of question intrepid Laurie Wallin likes to raise and tackle. Read on to discover how Laurie tackles the perfectionism monster when it rears its ugly head.
Are You Letting Perfectionism Kill Your Confidence?
My heart racing, I needed OUT of the car. Immediately. If I could have crawled out of my own skin, I would have. Tears welled in eyes. Breath short. Trying to calm myself, I focused on my friend next to me and blurted the most normal question I could think of:
“So, what did you think of preschool this morning?”
You see, we’re both in a mommy-and-me preschool with our toddlers and the scene above happened in the car on the way home. Why the heck was I such a mess after preschool? Good question.
Turns out it’s because I don’t have a clue how to be a normal mom. If you’ve read posts at my blog for any length of time, you know it’s partly due to the special needs of my older girls. Until today, though, I didn’t realize how much that’s changed me.
It’s left me a foreigner in the land of normal.
Raising kids with mood and behavioral special needs really messes with you. It’s tiring in every way imaginable. It’s not pretty to watch in public. And it is a confidence-killer. Especially if you’ve done everything professionals recommend and invested your life in therapeutic parenting, only to throw up the white flag and end up admitting your child to a residential treatment facility 7 years later.
Like I said—confidence killer.
But the circumstances weren’t the only culprit. I helped over the years by falling into the trap of perfectionism. In my grief and stress, I bargained, “If I just did everything perfectly, my daughter will get well.”
My perfectionism did more to kill confidence than the circumstances themselves.
Perfect vs. Confident
Perfect is the dark side of confidence. Confidence is knowing what you’re here for, what you’re good at, and what God wants you to do with it all. It’s recognizing and taking care of that realm in your life (2 Corinthians 10:14-17).
When we relentlessly focus inward instead of on God’s design, the clarity with which we see ourselves becomes a murky view of all we don’t have and can’t do.
But if we make it our life’s work not to be perfect but rather confident in what God made us to do and who He made us to be, it’s life-giving.
That is, I believe, what Jesus meant about a taking on the “light burden” and “easy yoke” He offers us all (Matthew 11:30).
Replacing Perfectionism With Confidence
Ask questions. Ask God, yourself, and others what you’re good at, what you do that helps others most, and what gives you the most joy?
- Notice your history. What activities are you attracted to, and which give you the most energy? What does your role end up being at whatever job or group you’re involved in?
- Find mentors. Seek and build relationships with people who share your strengths and passions. Look for people who challenge you to grow your strengths, and who encourage you in your giftings.
- Pray… with your eyes open. Every tiny fraction of a degree change in our life trajectory with each choice we make can lead to huge differences in outcome, so navigate them with your eyes emotionally, mentally, and spiritually “wide open.”
- Affirm what God’s affirming in you. Confidence is agreeing with what is true. Perfectionism is agreeing with and pursuing everything and everyone’s expectations. Focus on your area of gifting and strength, and affirm it daily.
For me, as I bounce back from years of waning confidence and ballooning perfectionism, this is a constant choice. But I don’t want to feel like a stranger to normal as a parent. I don’t want to constantly feel like a failure or like my own mind is a tyrant. So I choose daily to pursue true, honest, life-giving confidence.
Will you join me in that choice?
Laurie
How About It?
Did you recognize yourself as Laurie shared her story? If so, how about it? Are you willing to ask God to change your perfectionism into confidence in him? Are you brave enough to leave a comment to let Laurie know she’s not the only one working on this issue? She’d 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.
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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by jphilo | Oct 21, 2011 | Different Dream, Grief, Spiritual Support
As was mentioned yesterday, October is Down Syndrome Awareness Month. In honor of the occasion, guest blogger Ellen Stumbo wrote a two part series about how she reacted when her daughter was diagnosed with the syndrome. In Part 1, she described her initial reaction to the diagnosis. In Part 2, she shows how she adjusted to and embraced the different road her daughter would travel.
Down Syndrome Awareness: A Different Road, Part 2
I realized I was screaming. My sobs came from deep within my soul, and the anguish echoed around me. Yet, no one heard me. I felt totally and utterly…alone. I was lost.
After a while, the tears had been drained from my body. Without their constant veil, I was able to see more clearly, and a glimpse of light peered straight ahead. My heart started beating fast as I allowed myself to hope. I dragged my feet through the mud, I climbed over the branches, I held my breath, and I pushed the heavy vines out of my way.
A burst of light blinded me. I rubbed my eyes and slowly opened them. And here, in this path, there too was a gate. There was nothing spectacular about the gate; it wasn’t fancy, and it was certainly not impressive. It was a simple wooden entrance, with a wide open door. Yet, it was so inviting, so peaceful, so comforting. My heart was immediately drawn to it. Without hesitation, I walked through.
The beauty stunned me. The air was deliciously refreshing and the trees seemed to touch the sky. The sound of birds reached my ears. It was not a common bird song; it was music of the soul. The melody was so beautiful that it welled up inside me and I thought I might burst with joy! The flowers were unlike anything an ordinary person could imagine. If anyone were to make a bouquet with these, there would be no worthy recipient to be found, except for God Himself. And the colors, oh the colors! These shades could only be found in Heaven…and on this road. I paused. What I saw before me was magnificent. I felt humbled. This road was paved with glimpses of God. My heart was overflowing.
I knew I would be taking this road at a slower pace, there was hardly a defined path. We would be facing the wilds as we made our way through. Every step would be a new discovery that would reach all my senses. Things would take longer here, but that would make them more meaningful. I knew, that as I witnessed miracles, I would not dismiss them as natural and expected milestones. I smiled.
I realized then, that God was standing by me. He had been with me all along. Somehow, in my tears and anguish, I had lost sight of Him. I fell to my knees. He knelt down beside me and grabbed my face. He gently cupped it in His hands. He looked at me tenderly, “Certainly, this road will not always be easy, and you might not see me, but I will be with you in every step. And your heart? It will forever be changed; for this child will touch you in ways you didn’t know were possible. Your understanding and experience of life and of My love will never be the same. I gave you this child, because you needed her, and she needed you.”
He took me by the hand and helped me to my feet. With a grin on His face that made His eyes sparkle He added, “I love you, and I give good gifts to those I love. This child that I have given to you is mine, my beloved one, and a vessel of my love.”
I stared into the open, unknown space before me, allowing myself to feel the warmth of my baby girl as I held her close. She would lead the way. I wanted to begin the journey. I lifted my foot and started walking. Walking into the wildness and beauty of the road.
Need Some Tissues?
Oops, I forgot to tell you to get some tissues before reading Part 2 of Ellen’s series. Take all the time you need to compose yourself. Then, thing about how you have adjusted to life as the parent of a beloved child with special needs. Imagine how your experience could encourage a parent who just received a diagnosis and leave a comment if you like.
And thank you, Ellen, for sharing your heart with us. Because of you, there’s not a dry eye at this house.
Part One
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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 22, 2011 | Different Dream, Encouragement, Spiritual Support
Fall is here. For children all over the country that means football season. Except for children with special needs. Unless those children have siblings like Noah Newport, brother of Evan who was born with a heart condition called Noonan’s Syndrome. In today’s post, guest blogger Scott Newport (also dad to Noah and Evan) relates a touching tale about his older son’s act of compassion toward his little brother who died just a few months later.
Every Play Matters
This past Saturday afternoon I was visiting Mott Children’s Hospital at the University of Michigan and spending time with a father. Bobby is from Ohio, and his newborn daughter, Mia, has been struggling with a serious heart condition for almost six months. While sitting by his daughter’s bed, we talked.
Between him administering meds through a tiny tube and listening to the annoying, beeping monitors, and changing diapers he talked about his younger days. As he paused for a moment and started to put his large hand to his chin, I said, “My son Noah is starting football practice on Monday. Did you ever play?”
Turning toward me as though I should know, he said, “I was the quarterback.” He then went on to reminisce. “Scott, I’ll never forget the time I was knocked silly on one play and had to sit out. At halftime we were behind and the coached asked if I was ready to go back in for another play. I still don’t remember that half but after the game I found out I had run over two hundred yards and we had won.”
Driving home I couldn’t help but think about Bobby and his family and how they are enduring this tough time in their life, one day at a time, one moment at a time. I thought, as soon as I get home I am going to tell Noah that when he starts football on Monday, every play matters. I am taking Every Play Matters as my mission statement for this year.
You see, I really believe the things we learn when we are young will last a lifetime. I have always loved our Royal Oak Chiefs football program. There is nothing like going to a practice and seeing over 100 kids from ages seven to fourteen scattered out on a field and the numerous committed coaches teaching. The team colors are red and yellow and have always been a symbol of a burning flame—for me, a seemingly inextinguishable fire.
Like Bobby, Noah and I spent months up at Mott hospital. We were there with Evan—my younger son and Noah’s little brother—when he was just a newborn. He also had a serious heart condition.
When Evan was seven, Noah asked the coach at the last practice of the season, “Coach, can Evan come in for one play?” After Noah signed to me I pushed Evan up to the scrimmage line and he got his chance, his one play. About a month after that, Evan died. During that cold winter, I spent many moments wondering if Noah would still be a Chief.
I love the Chiefs program and all it has done for our family. The team has taught Noah about commitment and me a little more about life and the challenges that come our way. I guess stories like the one about Bobby and his strength are nothing new to teams that already understand that every play matters.
Maybe I don’t even have to tell Noah. I’m guessing now he probably already knows.
When Has Every Play Matters Been Your Mission Statement?
Can you think of a time when Every Play Matters has been your mission statement? Scott would love to hear about it, so leave a comment if you like.
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 | 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.
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