Special Needs Confession: Unglued and Reglued

Special Needs Confession: Unglued and Reglued

Special Needs Confession: Unglued and Reglued

Special needs confessions are a specialty here at Different Dream. Today’s confession comes compliments of guest blogger, Michelle Selent. In this post, she describes how a recent setback, due to med change for her daughters who live with fetal alcohol syndrome and bipolar disorder, left her unglued.

Special Needs Confession: Unglued and Reglued

I want to share with you just how God has been speaking to me since my girls started to go manic due to a change in their medication regime. Some friends and I are going through Lysa Terkeurst Bible study Unglued: Making Wise Choices in the Midst of Raw Emotions. Once again God has brought something to me that has divine perfect timing.

The past couple weeks have been some of the most challenging we have ever had with the girls. We are on our second medication since the last one. The first one we tried was horrific. Mercy screamed inconsolably for four hours until almost midnight one night then woke up screaming again at 5 AM. This coming on after both the girls literally were awake for 48 hours coming off the old medication, left us empty.

Special Needs Confession: Unglued by Frustration and Guilt

I did come unglued. I was furious to see what was happening to our girls. I yelled and screamed at God, literally waving my fist in the air in complete exhaustion and frustration. I cried the shoulder-heaving cry. You know, the kind that leaves you looking like you have Garfield-the-cat eyes when you wake up the next morning. Yeah. It wasn’t pretty.

Then comes the guilt. The guilt that comes from knowing that I swerved. When circumstances came at me hard and I didn’t stand firm. Doubt didn’t creep into my heart—it bombarded it.

Special Needs Confession: Unglued and Broken

I kept thinking: Where is God’s glory in all of this? How is He for me and not against me in all of this? What future and hope do my girls really have? Really? Is faith really just something you use to psych yourself out of reality? I was broken and empty.

A quote from this week’s homework struck my wounded soul.

And empty women, oh how we come unglued. Especially when the empty settles into the part of our souls where unmet desires restlessly wait. And in the dark corner, desperation churns for what could be but isn’t, and what we want but still don’t have.

I long for my sweet chocolattes to be redeemed from what their birth mother inflicted upon them. I long for them to learn. I long for them to be able to eat normally, sit normally, focus normally, speak normally, make friends, fit in, bring joy to others, and one day, for them to know Jesus and serve him, while living successful adult lives. I long to not only love them but to like them more. Don’t get me wrong—they have very endearing aspects. Mercy can smile and laugh and melt you to pieces with her cuteness, and Jubilee is such a love bug. But the scales are tipped right now with all the behavior issues.

Special Needs Confession: Reglued and Unswerving

God brought this scripture verse back to the forefront: Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. (Galatians 6:9) Lysa also said this: He goes deep like the ocean. He stretches wide like the sky. He reaches out like the sun. Even when our tears slip, we know his hand never does.

Oh, how I needed to read that. Yes, I swerved, and yes, my flesh failed. But in my best Jesus-take-the-wheel voice, I tell you I am swerving back. Thank you, Jesus, that you never fail. Help me to not give up and to see the harvest. God knows my unmet desires and why they mean so much to me. May I desire Him even more and May he give me an unswerving faith.

Insert Your Special Needs Confession Here

I’m pretty sure Michelle’s not the only parent of kids with special needs who’s come unglued. Now’s the time to share your confession with people who understand. If you’ve been reglued, tell us how that happened, too.

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Michelle is the mother of two adopted daughters with fetal alcohol syndrome. You can connect with her on Instagram.

Author Jolene Philo

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Redwood Love Notes at Summer Camp

Redwood Love Notes at Summer Camp

Redwood Love Notes at Summer Camp

Redwood, summer camp, and love notes don’t have anything in common. Unless you’re guest blogger and carpenter Scott Newport. Today, he shares the story of how he used salvaged redwood to stay close to his son Noah, who was at summer camp, and how he’s expanding the idea to help families dealing with hospitalized children or the death of a child.

Summer Camp

I guess Penni must have picked up on some wisdom from other camp moms when she announced her idea of hiding a little love note between Noah’s underwear and his new swim trunks. Noah was nine years old, and this would be his first, week-long camp experience. Not wanting to be out-parented, I also put an envelope in Noah’s suitcase. I just jammed my envelope toward the bottom.

The Envelope

All week I worried if Noah would be homesick and waited for the phone to ring. Friday was here before I knew it. Noah walked into the house, and you could tell he had a good time. Story after story broke from his lips and then I interrupted. “Did you open the envelope?”

“Yea dad,” he replied.

Wondering, I asked, “Well, what did you think?”

“I held it every night before I went to sleep.”

This past week Linda the social worker from Walk With Me called. She asked if I could stop by and see a family at our local hospital. You see, Walk With Me is a pediatric hospice and palliative program, and I am a graduate. Our son, Evan died a couple of years back; I now have a strong passion to help other families on their journey.

The Redwood

Before I went to see them, I wondered what I would say. While working in my wood shop, I remembered the story about Noah and the envelope. I soon found myself taking some old redwood I reclaimed from a deck on Lake Michigan and cutting it up into small pieces about the size of a harmonica. I then split each of those pieces in half, creating a mirror image of the other. In woodworking we call that “book matched,” a technique often used when making fine violins or the interiors of a Rolls Royce.

So when Noah opened his envelope, there was no note but a small piece of redwood with all of the names of the other members of our family engraved there: mom, dad, Chelsea, and Evan. On the mirrored piece I kept, I had the name Noah written on it.

You see, I hoped when Noah opened his note from me, he would be reminded of his family. My plan worked. While he was holding onto his each night, I was holding on to mine and then laying it on my bed stand while I slept.

Redwood Transformed

During my visit with the family, I told them about the wood and gave them a sample, asking if they had any ideas how this could help families, especially if a parent had to leave their child. While the dad and I talked, the mom was standing at the nurses’ work desk. Within about fifteen minutes, she had asked for ribbon, a pair of scissors, and some markers. Luckily I had come prepared.

When she was done, she showed me. When she put both pieces together like pages from a book her creation was an assembled heart. Each stick had its own inscription. One side said, “Love ties us together,” and the other “Even when we’re apart.”

I just loved what she had done. I told her to keep it and to send me a picture. I’m hoping this may be a new way to help families who are on the journey of having a child with a life-limiting disease.

Redwood Remembrance

And if you’re wondering, Evan had a piece of redwood too with all our family names on it. My half is still on my bed stand and Evan’s was buried, neatly nestled in his folded hands.

What Do You Think?

Scott’s story gives me goosebumps. I keep thinking of how his redwood idea could minister to so many parents of kids with special needs. How about you? What’s your reaction to his story? How would you like to see the idea used? Leave a comment.

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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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.

Author Jolene Philo

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Adopting Terminally Ill Children: One Family’s Story, Pt. 3

Adopting Terminally Ill Children: One Family’s Story, Pt. 3

Adopting Terminally Ill Children: One Family’s Story, Pt. 3

Adoption changes families in a myriad of ways. For the past two days, Sue Badeau has been sharing the story of how adopting 20 children. 3 of those children had terminal diagnoses, changed their family. In Part 1, you met Sue and her husband Hector and heard their adoption story. In Part 2, she focused on the experience of adopting children with special needs. Today, in Part 3, Sue shares lessons they learned as they grieved for their sons.

Adopting Terminally Ill Children: One Family’s Story, Pt. 3

Three Lessons Learned

  1. Everyone can heal and grow. Healing and growth may look different for each individual. We may never see the wholeness we are hoping for, but we can continue to work towards it. I learned this lesson at an early age from my grandfather as he showed me how he cared differently for the various plants in his vegetable garden so that each would have the best chance of growing and bearing fruit.  I have come to understand that this analogy also applies to children—they are not all easy to grow, like zucchini, but then, what a boring garden it would be if we grew nothing but zucchini!
  2. There is as much value in the journey as in the destination. I know, I know, it sounds like a worn cliché, but we have found it to be true.  Years ago, we went on a family hike and this message came home to me in a powerful way as I saw my small son Raj, who had been diagnosed with cerebral palsy and told that he would never walk, clambering along the hiking trail with his brothers and sisters.  Years later as we experienced everything from teen pregnancy to a son in prison, I have had to remind myself again and again of this important lesson.
  3. While God does not “fix” everything in the sense of removing all obstacles, curing all diseases, or unlocking all disabling conditions, He does, indeed, make all things new. I learned this after experiencing a car wreck—I still have some scars and there are things I cannot do, yet I was changed by the experience and “made new” in important ways.   And as I think about some my children viewed as most “damaged” by the world—whether physically or emotionally “damaged” by all kinds of brutal early life experiences, turning to drugs, early pregnancies or other outlets for their pain—I know that some people look at them and only see the wreck. But I like to look at them and see them as survivors.  And I am always amazed how, in spite of the “damage” they have sustained, they, through God’s grace and healing power, are able to find amazing new ways to do old things that many of us take for granted—communication, relationships, eating, moving, getting through the day.

Toolkit for Parents Caring for Terminally Ill Children

If I were to try to offer words of encouragement to parents caring for children with severe special needs and terminal illnesses, I would urge them to create a toolkit for themselves to help them make it through the dark times.  Into the toolkit would go at least the following tools:

  • Knowledge – Get as much information about your child’s condition, current state-of-the-art research, and treatment options as you can.
  • Self-care – When on an airplane, the safety instructions include these critical words, “When traveling with a child, put your own oxygen mask on first.”  While this initially seems counterintuitive to parents, it is essential.  You cannot care for anyone if you are out of oxygen yourself.  Feed your soul—make a personal self-care plan and follow it.
  • Intimacy and affection – Nurture your relationships with your spouse and other people in your life that are important to you.  They need you, you need them, and together you will create a strong team (the cord of 3 strands in Ecclesiastes 4:12) to meet the needs of your special child(ren).
  • Anger management techniques – Don’t deny anger when it comes—and it WILL come. Whether you become angry at the disease itself that plagues your child, the health care system, the schools, strangers on the street, yourself, or God, there will be times of anger.  Learning to manage it in ways that are safe and healthy is key to coping with both the life and the grief you will experience on this journey.
  • Play – I can’t say enough about the importance of laughter, silliness, and play with your children, the one who is dying as well as the others.  “Laughter is the best medicine” may sound trite, but it is the gem of a significant truth.
  • Pray – God the Father had to bury his only begotten son.  Surely, he understands and knows our grief.  Talk to him.  And listen to him.

Your Thoughts about Adopting Terminally Ill Children

Now that you’ve read the final installment in this series about adopting terminally ill children, what thoughts do you have? Leave your insights and comments below. To keep up with the Badeau’s future adventures, visit their website at www.badeaufamily.com.

Adopting Terminally Ill Children: One Family’s Story, Part 1
Adopting Terminally Ill Children: One Family’s Story, Part 2

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Adopting Terminally Ill Children: One Family’s Story, Pt. 2

Adopting Terminally Ill Children: One Family’s Story, Pt. 2

Adopting Terminally Ill Children: One Family’s Story, Pt. 2

Adoption is a life-changing decision for every member of the family. Yesterday, in Part 1 of a series about adopting children with terminal illnesses, you met Hector and Sue Badeau. They have 2 birth children, 20 adopted children (that is not a typo), and 3 of those children had terminal diagnoses before adoption. One of those children, Wayne, is pictured above.

Today, Sue focuses on the adoption of their three children with terminal special needs. Tomorrow in Part 3, the final installment in the series, she shares lessons learned during their grief journey.

Adopting Terminally Ill Children: One Family’s Story, Pt. 2

We already had 16 children and a very active, full life when a friend in adoption called one day to tell us about a 3 year old Chinese little boy with a rare terminal illness called Sanfilippo syndrome that needed an adoptive home.  Of course we had never heard of this condition, and so we began to learn about it so we could maybe help find a family for him. We learned that the life expectancy was from 8 to 13 years.   The more we learned, the more we realized how challenging children with this syndrome can be for many families. And, as our friend quickly pointed out, “Wouldn’t he do great in a large family?”

Breaking our Rule to Not Adopt Terminally Ill Children

It didn’t take a lot of phone calls to convince us—Wayne was our son.  He was, in some very real, preordained way, already our son, so now all we had to do was bring him home. Wayne was such a delightful child and we were so glad that we broke our rule about not adopting a child with a terminal illness that within the next 3 years, we added two more terminally ill children to our family—Adam, who had the same disease as Wayne but was also plagued with fetal alcohol syndrome, lead poisoning, and an early life history involving trauma, and Dylan, a shaken baby.

Terminally Ill but Living with Gusto

Wayne lived every day with sheer joy and gusto.  When he was still able to walk, he didn’t.  Walk, that is.  He ran—everywhere.  He was the hardest of the little kids to keep track of, always on the go.  As we looked through pictures, there were several of one of the kids or another—George in one, Jose in another, SueAnn here, Chelsea there—all holding him tightly for a photo; if you didn’t corral him, he’d escape.  Even in the photos where he is just sitting in a chair, you can see the glint in his eye that says, “just you wait” and you can hear his little laugh, as he prepares to break out.  Once, when we lived in Vermont, he escaped in the middle of the night and the milkman came knocking at our door to bring him home at 4 in the morning!

Our Terminally Ill Sons Taught Us True Joy

Adam was the first to die, in 1999, followed by Dylan in 2010.  In April of this year, Wayne, the last of our “3 Musketeers” completed his earthly journey.  Each of our children is unique and enriches our life in their own ways with their individual strengths, gifts, personality quirks, talents, and spirit.  Wayne, more than any other, taught us the true meaning of joy.  As we reminisced about Wayne in the days following his death, the most common words used were smiles, clapping his hands, that laugh, mischievous, wild, always on the go, and always up to something.

Losing a child is an unspeakably devastating experience.  No matter how prepared you think you are, and no matter how deep the roots of your faith, when the moment of death arrives, and the days and weeks of grieving that follow, the pain seems almost bottomless.  No one should ever have to bury a child.  It never feels right.  I know Jesus understood this, which is why he showed such compassion toward parents of children with illnesses or special needs, and one of his early-recorded miracles is restoring the daughter of Jairus’ to life and health.

Life Lessons Learned through Adopting Terminally Ill Children

My husband and I grieved individually and together as a couple.  We grieved as a family, and each of our children also grieved in their own way.  Since most of them had also experienced many losses and traumatic experiences in their younger years, the grief of losing these 3 brothers also triggered painful memories of past losses. This grief, along with the joy and challenges we have experienced raising our children with special needs, has profoundly changed us.  We have learned many important life lessons along the way.  Tomorrow, I’ll summarize a few of them.

What Have You Learned from Your Children?

In today’s post, Sue mentioned lessons her family learned from their sons with terminal diagnoses. But we all learn lessons from our children, be they typical, special needs, or terminally ill. If you like, leave a comment about lessons your children have taught you. Or tell about something you’ve learned from Sue’s story thus far. Come back tomorrow for the final installment in this series about adopting children with terminal illnesses.

Adopting Terminally Ill Children: One Family’s Story, Part 1
Adoption Terminally Ill Children: One Family’s Story, Part 3

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Adopting Terminally Ill Children: One Family’s Story, Pt. 1

Adopting Terminally Ill Children: One Family’s Story, Pt. 1

Adopting Terminally Ill Children: One Family’s Story, Pt. 1

Badeau family at daughter SueAnn’s wedding.

Adoption is a life-changing decision for families, one that required deep thought, discussion, and research. Families that want to adopt children with special needs or terminal diagnoses have even more to think about. Today, Different Dream welcomes Hector and Sue Badeau, parents of 22 children (yup, that’s them in the picture), twenty of them adopted, three of whom had terminal special needs. Over the next three days, Sue tells their family’s story. In Part 1, she leads us through the growth of their family. Part 2 focuses on the adoption of their three children with terminal special needs. In Part 3, she shares lessons learned during their grief journey.

Adopting Terminally Ill Children: One Family’s Story, Pt. 1

My name is Sue Badeau and I am the mother of 22 children.  (It almost sounds like the opening of a joke, with a punch line to come, but trust me, it is very real!)

The Journey of a Lifetime

In 1979 I married my high school sweetheart, Hector, and we began the journey of a lifetime.  He grew up in a blue-collar French-Canadian Catholic family, the 12th of 16 children born to his parents.  Hockey was the center of his life, and because he excelled, hockey provided the ticket out of our small town by way of a college scholarship.  Throughout our dating years we had talked about working together and when we eventually had children, raising them together with equal involvement and participation by both parents.  So, the logical thing to do, of course, was to buy a business less than a month after our college graduations (and a month before our wedding!) The Christian bookstore, Logos, was a wonderful place for us to begin our marriage, grow in our faith, and explore ideas about what we wanted to do in our life.  While still managing the bookstore, we became parents, first to our birth daughter Chelsea, then by adoption when we added our son Jose from El Salvador, and also by foster care when we welcomed a teenage girl into our home.

Life Changing Adoption Choices

Those early career and parenting decisions profoundly shaped our lives.  Guiding scriptural passages during those years included Luke 9:48. “Whoever welcomes this little child in my name welcomes me; and whoever welcomes me welcomes the one who sent me. For whoever is least among you all is the greatest.” And Romans 8:15-16: “ . . . the Spirit you received brought about your adoption to sonship. And by him we cry, ‘Abba, Father.’ The Spirit himself testifies with our spirit that we are God’s children.”  And of course, I Corinthians 4:10: “We are fools for Christ!”

As we adopted and fostered more children, we sold the bookstore, and Hector became the full-time at-home parent while I worked outside of the home in the field of social services.  The last of our children needing full-time round-the-clock care passed away in April, and Hector recently ventured back into the workforce with two jobs, one as the youth program director at our church and the other as an overnight counselor at a local homeless shelter.

From 1980 when our first daughter was born, to 1997 when the last of our adopted children joined our family, we brought home a total of 22 children to form our “forever family” (2 by birth, 20 adopted) and cared for 50 foster children (half special needs infants and half teenagers).  Since that time, we also served as a host family to refugees from Guatemala, Kosovo, and Sudan and our children have blessed us with 35 grandchildren and 5 great grandchildren!

God’s Guidance on the Adoption Journey

God has led us, at times gently and at times quite firmly, along this journey over the years. God planted this motto into our hearts, “Our family would adopt the child most in need of a home, but least likely to get one.”  Initially, we thought that simply meant a child who was no longer an infant (so our first adoption was of a 2 year old boy) but over time, He showed us that this motto included children who had siblings that needed to stay together, children who had experienced significant trauma in their young lives, children with serious health, mental health, and cognitive challenges, children who were already teenagers but still in need of a family.  Through my work, we also helped many children be adopted by other families and part of my work was during the HIV boarder babies crisis in the late 80s and early 90s.  As I placed these terminally ill children into their adoptive homes, I admired these parents deeply but believed in my heart that I could never bear to adopt a child who I would have to later watch die.

Not until a precious little boy named Wayne came along.

What Do You Think of the Journey So Far?

While reading Sue’s story, I have to strong responses. The first is a deep respect for the Christian generosity and compassion Sue and Hector displayed in welcoming these children into their home. The second is a certain knowledge that not all of us—including me—are called or equipped to serve in such a way. But whatever you sense God calling your family to do, please leave a comment about Sue’s story so far. What questions do you have? What encouragement can you offer? What’s been your adoption experience?

If you’d like to read more about the Badeau family, come back tomorrow to meet Hector and Sue’s three very special sons Wayne, Adam, and Dylan.

Adopting Terminally Ill Children: One Family’s Story, Part 2
Adopting Terminally Ill Children: One Family’s Story, Part 3

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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Grief and Hope On the Other Side of the Mountain

Grief and Hope On the Other Side of the Mountain

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.

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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.

Author Jolene Philo

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