Whose Fault is This?
Let’s face it, at some time or another many of us, maybe even all of us parents of kids with special needs ask the question. Whose fault? Why did this happen? Written by Kevin O’Brien
Let’s face it, at some time or another many of us, maybe even all of us parents of kids with special needs ask the question. Whose fault? Why did this happen? We can go through all kinds of scenarios in our heads. Some of us lean to the scientific looking at or for all matter of causes: genetic, environmental, what have you. Some of us, especially Christians, lean entirely spiritual. We leave no spiritual stone unturned. We look at ourselves and our spouses. We may even look at our child. Either way, we are looking for a cause. We are looking for fault.
It’s entirely understandable. It’s perfectly normal. I would be lying if I said I haven’t done either. I have. I have wondered about the scientific and the spiritual reasons. I have blamed myself. I have wondered about genetic histories of myself and my wife. I have wondered what it was that I did to cause this. My guess is that you have too.
We are not alone in that belief.
In his Gospel, the apostle John recounts the story of Jesus healing a man born blind. Perhaps you remember the story: Jesus spits on the ground making mud, puts it on the man’s eyes and he is healed when he washes in the Pool of Siloam. It’s an interesting story on several levels. Kids love it because they learn that Jesus spits! (And they wonder if that means they have a pass to do so too). Churchy adult types may not be quite sure about it, but the spitting is not really the point. As a rule we forget about the controversy that follows, but this one healing causes a whole lot of upheaval. The story takes up all of chapter 9, and is very much worth reflecting on in its entirety. The point of the story is found right at the beginning in verses 1-3, before the healing even takes place.
As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.
John 9:1-3, NIV
Whose fault Jesus?
This is not the crowd asking the question, not the religious leaders trying to trap Jesus. It was the disciples. They drew a conclusion, a conclusion that seemed perfectly natural to them. It seemed, after all, to flow directly from the Law in Exodus and Deuteronomy and Numbers. Jesus’ response is truly freeing.
It is not his fault.
It is not his parents’ fault.
Fault is really not at all the issue in this case. The issue is the glory of God. God’s glory shines through this man’s life because Jesus heals him. But God’s is at work in more than the healing of this man. The healing helps the man, to be sure, but it does far more. It sets in motion a fierce debate about sin and blindness, about who is from God and who is not, who is with God and who is not. In short, this man’s disability becomes the catalyst to see Jesus for who he is and by extension God for who he is.
God’s very nature, his compassion and humility, are seen in and through the suffering of this man. The disciples are impacted by this man. So are his neighbors and his parents. The Pharisees were forced to confront their unbelief because of this man.
For those of us with children who are disabled in some way, determining fault may feel important, but it may be the wrong question entirely. I am not saying that medical causes or treatment are unimportant (of course they are or Jesus would not have bothered to heal the man in the first place). I am saying that there is something even larger at stake.
Today, when we think about ministry and special needs, we generally think about ministering to people with special needs. Perhaps in ways that we have a hard time conceiving, it is those with special needs who are in fact ministering to us. They show us how to have mercy and show compassion, they teach us patience and yes even joy. They may well force us to confront the reality of Jesus like the man born blind.
Sometimes the crucible of suffering is exactly what we need to have our eyes opened to the light of Jesus. It is not easy. It is no doubt not the path we would choose. But as John shows us in this episode, in Jesus we see a God who is in the business of subverting the difficulties and tragedies of this world. That is a gift.
Written by Kevin O’Brien
Kevin O’Brien is a husband, father, ordained minister, writer and volunteer theologian. He holds a Master of Divinity and Master of Theology from Liberty Baptist Theological Seminary where he won the Th.M. award in 1997. He has also done graduate work at the Institute for Christian Studies in Toronto. Kevin worked as a brand manager on the Bible team at Tyndale House Publishers. During his time at Tyndale he has helped to develop several Bibles and has written articles which have appeared in The Way, the iShine Bible, and the Illustrated Study Bible. He also wrote a series of devotionals for WAYFM’s World’s Biggest Small Group.
Most recently, Kevin wrote an Advent devotional eBook. You can find it here.
Kevin lives in the far western suburbs of Chicago with his wife, three children, a dog, and a cat. He would prefer to spend his time reading, writing, woodworking and watching the Chicago Blackhawks.
Making New Traditions
Holidays can be a very difficult time for families with kids with special needs. Many of the traditions they used to enjoy, they can’t anymore. Family gatherings they used to cherish, they can’t participate in anymore. It can be an especially hard and lonely time as the difficulties that come with special needs are magnified and what has been lost looms larger than ever. Written by Sarah McGuire
Pumpkin pie, turkey, football, stuffing, twinkling lights, snowflakes swirling down, pies, family gatherings, gifts around a tree, and cookie decorating. The holidays. They inspire a feeling of cozy warmth, celebration, and cherished memories. Until they don’t. Until thinking of those memories breaks your heart in pieces because life has changed. You now have a child with special needs or disability that has changed everything.
When our son was young and was allergic to most foods, highly sensory sensitive, nonverbal, autistic and more, the holidays rolled around and that meant no pie, no cookies, no stuffing, no Grandma’s special bread rolls, no gravy, no family gatherings. Too much noise, too much chaos and stimulation, too much change, too great of a chance for food reactions. Too much of some things, yet nothing of the desired things.
Our first Christmas with him was miserable. We were 1100 miles away from family and because of our son’s needs and our financial constraints, we didn’t even try to go home for the holidays. We decided we needed to make our own Christmas traditions since we couldn’t be with family.
In our family we do birthday desserts since my husband detests cake. With Christmas being Jesus’ birthday, our first new tradition was to have a birthday dessert with candles and sing “Happy Birthday” to Jesus after our Christmas meal.
I made a cherry pie (my husband’s favorite) with all special ingredients that we could eat on our son’s special diet, which I had to strictly abide by since he was nursing. It took me hours to find a recipe that met the requirements (special diets were rare at that time), had to special order some ingredients, and spent an hour or more making it. We were so excited about this pie. It was the pinnacle to our somewhat sorry Christmas meal. With great anticipation we served it and took our first bite – yuck! It was awful. We trashed the rest of the pie.
Holidays can be a very difficult time for families with kids with special needs. Many of the traditions they used to enjoy, they can’t anymore. Family gatherings they used to cherish, they can’t participate in anymore. It can be an especially hard and lonely time as the difficulties that come with special needs are magnified and what has been lost looms larger than ever.
Our first attempt was a sorry start to new holiday traditions. However, we persisted and 11 years later, we have some special Thanksgiving and Christmas traditions. If you find yourself in a place that we were at eleven years ago, think about starting some of your own traditions that fit your family’s needs. Here are a couple of ours to get your thinking started:
We made our own specialty-diet approved Thanksgiving menu.
We have a Thankfulness Pumpkin where each morning of November, we each say one thing we are thankful for and write it on the pumpkin with a Sharpie.
We have a Christmas moose (we couldn’t afford the famous elf so we used what we had) that hides at night every night in December and on rare occasions finds himself precarious spots. We don’t do elaborate scenes, it’s more of a “hide and seek”. The boys love searching for him every morning. On Christmas morning, he is always kneeling with Mary, Joseph and the camels in the nativity.
Every Christmas Eve we have a pajama party and watch Elf. Often we open one gift beforehand, which happens to be new pajamas.
When we aren’t with extended family, we make Jesus a birthday dessert and sing him “Happy Birthday”.
If you are in a tough season of not being able to participate in holiday celebrations like you used to, I hope you are able to create some new traditions that fit your family’s needs perfectly!
Written by Sarah McGuire
Safeguarding Your Marriage
In the early years our oldest daughter didn’t sleep. She would be up for hours and hours at a time in the middle of the night. Although I was the one who was mostly home during the week it truly was too much awake-ness for too long of an amount of time for one person to handle it all. Written by Laurisa Ballew
In the early years our oldest daughter didn’t sleep. She would be up for hours and hours at a time in the middle of the night. Although I was the one who was mostly home during the week it truly was too much awake-ness for too long of an amount of time for one person to handle it all. So my husband willingly took his fair share of night shifts. Turns out lack of sleep is super hard on relationships. I’m sure if you have a child that doesn’t sleep well you are very aware of this fact. Lack of sleep compounded with the stress of raising a child with any kind of special need calls for strong relationship skills. While we didn’t do everything right and there were often harsh things said and forgiveness needed I do think we had a few things in place that served our family and our relationship really well.
Pre-forgiven.
It didn’t take long for us to figure out the middle of the night weren’t our shiniest moments. So when frustration (and fatigue) got the best of us we chose to pre-forgive each other. My husband is very reasonable, he is kind and generous, and would almost always do anything to make my life better. Also, he has said some unkind things to me at 3am after getting no sleep. So the next day when one of us would apologize the other would respond with “pre-forgiven”. Meaning, “Hey, I know you, and 3am aren’t our best relational moments, so let’s acknowledge we are doing our best and move on” no big makeup conversation needed.
Time off.
From the very beginning my husband and I each had time to rest every week. Rest is vital for us. In fact if we look at the creation story Man rested on his very first day of existence. And then worked from his rest. So we made it a priority very early on to have 4ish hours a week to rest and recharge. This can be a challenge if you have a child that is very connected to one parent. But let me give you a bit of truth. YOU HAVE TO REST. And your spouse and your child WILL be okay if you step away for a few hours. It might be rough for both of them. But they need a parent who isn’t at their wits end. So it is vital to take time away and reset.
Time together.
Once a week(ish) we would find a bit of time to be together. Sometimes that meant a babysitter and a real date. Sometimes that meant unplugging from technology and playing a game or watching a movie during nap time or bed time. But it was something we valued and were extremely protective of. It is easy to forget that you like your spouse when fun feels rare and there is constant stress to manage. I even remember a coffee date at the hospital coffee cart during our daughters annual MRI.
Safeguarding your relationship while having a child with medical or special needs is so important. And done with intentionality.
“A perfect marriage is just two imperfect people who refuse to give up on each other”- unknown.
Laurisa Ballew is a nurse by trade and mother to a special needs child by fate. She fiercely believes hope and grief walk hand in hand in life, and that storytelling is the universal language that connects us all. Laurisa has three daughters and writes about the constant humility of parenting in her blog Raising A Sisterhood.
When Being Thankful Is Hard As a Special Needs Parent
When being thankful is hard as a special needs parent––and let's not beat around the bush, watching our children struggle doesn't lend itself to loud hosannas––how do we approach Thanksgiving? How do we cultivate gratitude without sugar coating the challenges in our kids' lives? How can we be grateful when a child's condition is going from bad to worse, and we can find nothing to be grateful for? Written by Jolene Philo
When being thankful is hard as a special needs parent––and let's not beat around the bush, watching our children struggle doesn't lend itself to loud hosannas––how do we approach Thanksgiving? How do we cultivate gratitude without sugar coating the challenges in our kids' lives? How can we be grateful when a child's condition is going from bad to worse, and we can find nothing to be grateful for?
I stared down those questions more than once when our baby boy struggled to stay alive.
The first time was during my first Thanksgiving as a parent. By then our six-month-old had endured 2 major surgeries, a three week NICU stay, a week long PICU stay, two dozen early morning GI procedures, and an overnight hospital stay on Halloween weekend. I was sleep-deprived, grieving, and my breasts were sore after months of pumping milk for our tube-fed baby who could tolerate nothing but breast milk. The thought of being thankful for my child's precarious state of health and the pain our baby had endured was unimaginable. Cruel.
I couldn't do it.
The week after my thankless Thanksgiving, I did what proud, new parents everywhere do. I composed a Christmas letter, complete with pictures of our baby boy in his elf costume, to mail to the many friends and family members who had faithfully prayed for us since our son's birth. As I reread Luke 1 and 2, looking for a verse for the end of the letter, the story of Jesus' birth came alive for me in a way it never had before. For the first time, I understood the enormity of what God had done in sending His Son to earth to live among sinners and die to save them. I understood that while God knew the good that would come through the death of Jesus, the sacrifice he made broke his heart.
In that moment, for the first time since I had become a parent, gratitude flooded my soul.
Not for my son's condition. Not for the anguish my husband and I had experienced. Not for our son's life. Not for healing. Not for doctors. Not for modern medicine. Not for the family and friends who had rallied around us. Not for any of the things clueless people said should make me thankful as the parent of a child with special needs.
I was grateful because God, the ruler of the universe, knew my pain.
Instead of commanding me to be grateful, he shared my broken heart. He sat with me. He put his arm around me. He cried with me. He said, "I know. It hurts. Go ahead and cry. Borrow my hankie. Take as long as you need. I'm here for you."
When being thankful is hard as a special needs parent this Thanksgiving, remember that he is here for you too.
He's not asking you to be grateful for the challenges in your child's life. He's not asking you to deny your emotions. He's not asking you to act like everything is okay. He's not asking you to soldier on. He's asking you to lean into him. To cry on his shoulder. To cling to his compassion until one day, a day you can not yet imagine, you realize you have someone to be thankful for.
Jolene Philo is the mother of a son born with life-threatening special needs and the daughter of a father severely affected by multiple sclerosis. In her 25 years as an educator, she integrated children with special needs into her classroom. She’s written 5 books about caregiving, special needs parenting, and childhood PTSD. She recently co-authored a book with Dr. Gary Chapman about how parents of kids with special needs can use the 5 love languages in their families. Jolene speaks at conferences around the country and internationally, facilitates classes about childhood trauma for educators, and trains special needs ministry leaders and volunteers. She blogs at www.DifferentDream.com. She and her husband live in Iowa.
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Giving Thanks When You Don't Feel Thankful
When you are struggling to find things to be thankful for in everyday life, here are five truths about God that you can praise Him for this Thanksgiving season. Written by Jonathan McGuire
It’s two weeks from Thanksgiving. For many households around the United States, Thanksgiving means turkey dinner, pumpkin pie, family reunions and football. It will often include a round of everyone sharing something that they are thankful for.
What does Thanksgiving mean for you and your family?
When we were new to this journey, Thanksgiving meant trying to figure out how to feed our son his specialty diet at the larger family get togethers, sensory overload, and missing old traditions while trying to learn enough to make new traditions.
Perhaps this is where you find yourself. When you are in this spot, it can be difficult to find things to be thankful for and you may feel disingenuous trying to muster the energy to celebrate, when all you feel is overwhelmed.
When you are struggling to find things to be thankful for in everyday life, here are five truths about God that you can praise Him for this Thanksgiving season.
God is with you. – Psalm 23:4 “Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and staff, they comfort me.”
He is in control.- Psalms 73:26 “My flesh and heart may fail, but God is the strength of my heart.”
He understands your pain. – Psalms 34:18 “The Lord is close to the brokenhearted and saves those who are crushed in spirit.”
You are loved – John 3:16 “For God so loved the world that he gave his one and only Son, that whoever believe in him shall not perish but have eternal life.”
He has a plan - 1 Corinthians 12:18 “But as it is, God arranged all the members in the body, each one of them, as he chose.”
This Thanksgiving, when you feel like you are overwhelmed and can’t take one more step forward. Pause, take a breath, and reflect on one of these truths. When you do this regularly, you will find your anxiety levels will decrease, your sense of peace will increase, and you will truly have something for which to be thankful.
Written by Jonathan McGuire
Jonathan McGuire is the father of two sons and the co-founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disability on a spiritual and emotional level. You can follow Hope Anew on Facebook here.
Hope Anew has launched the Hope Anew Online Community and would love to have you be a part of it! You can learn more at www.HopeAnew.com.
Seeking Solace In The Pain
Over the coming months, I want to look at how we, as parents of children with special needs, tend to respond to the reality that we face on a daily basis. We do not suffer in the way that our children do. But we do far more than simply see these things happen to our children. We “suffer with” in a very real sense. The heartache is real, the concern is real. The pain is real. Written by Kevin O’Brien
Job tells the story of a man whose entire life was taken from him in a single day: his property and livestock stolen or destroyed, his servants and children killed.
Seven sons.
Five daughters.
7,000 sheep.
3,000 camels.
500 yoke of oxen.
500 donkeys.
“a large number of servants.”
“This man was blameless and upright; he feared God and shunned evil” (Job 1:1 NIV) yet he was struck with the starkest of pains. Natural disaster and human evil together devastate Job’s life. Like us, Job cries out to God in despair. Job chapters 3 and 6 show the depths of that despair: he wishes that he had never been born, that God would grant him the release of death. He cannot eat, he cannot rest, he is completely undone.
If only my anguish could be weighed
and all my misery be placed on the scales!
It would surely outweigh the sand of the seas
Job 6:2-3a
As a parent of an autistic child, Job’s words feel familiar, I have felt the same sting. Of course, he suffered far more than I, his calamity is far greater than mine, but in his anguish I dare to call him brother.
The problem with the book of Job is that it doesn’t do the one thing that you want it to do. It doesn’t tell us why pain and suffering exist. We all ask why. We all want to know the reason for our suffering, that it somehow matters. We want it justified. And as a rule, we don’t get an answer to this question. The book of Job in particular and the Bible as a whole do not set out to give systematic reasons for evil and suffering. There are pointers to be sure, but more so there is an assumption that suffering is a part of the world we live in. The bigger questions then, are how does God relate to us in this suffering, and what is He doing about it. The question for us is how should we respond?
All too often we buy into the modern, western notions that everything should work out for the best in every situation and if it doesn’t then there has got to be an answer. We have to find some explanation, something or someone to blame.
Barring that, we may deny the reality of the suffering altogether because it seems to somehow contradict what we believe about God and the nature of his interaction with the world. Are we afraid of what will happen if the truth gets out? Are we afraid of what will happen to us, to our belief, our world if we don’t have nice neat answers? Sometimes I think so.
Over the coming months, I want to look at how we, as parents of children with special needs, tend to respond to the reality that we face on a daily basis. We do not suffer in the way that our children do. We do not experience the often overwhelming and pervasive issues of being misunderstood, of not being able to cope with things that others take for granted, of not being able to communicate or see the world in the ways that “everyone else” does. But we do far more than simply see these things happen to our children. We “suffer with” in a very real sense. The heartache is real, the concern is real. The pain is real.
I have found that there are basically four responses we parents of special needs kids have when confronted with the often stark, in your face reality of the suffering of our children and yes, our own suffering. Perhaps one, perhaps all of them reflect your experience:
Whose fault is this?
Why would God allow this to happen/why would God do this?
It is all the devil’s fault.
Fault? There is no fault, how dare you suggest that?
All four responses are entirely understandable, but none of them, I find, truly address the reality that we, and our children, face. I believe there is a better response. Harder, but better. It is realizing that God is a God who suffers with us.
So if any of these four responses feel familiar (or if all of them do) I invite you to take a journey with me to explore how we might better respond to the suffering we face.
Written by Kevin O’Brien
Kevin O’Brien is a husband, father, ordained minister, writer and volunteer theologian. He holds a Master of Divinity and Master of Theology from Liberty Baptist Theological Seminary where he won the Th.M. award in 1997. He has also done graduate work at the Institute for Christian Studies in Toronto. Kevin worked as a brand manager on the Bible team at Tyndale House Publishers. During his time at Tyndale he has helped to develop several Bibles and has written articles which have appeared in The Way, the iShine Bible, and the Illustrated Study Bible. He also wrote a series of devotionals for WAYFM’s World’s Biggest Small Group and is currently at work on a devotional series .
Most recently, Kevin wrote an Advent devotional eBook. You can find it here.
Kevin lives in the far western suburbs of Chicago with his wife, three children, a dog, and a cat. He would prefer to spend his time reading, writing, woodworking and watching the Chicago Blackhawks.
Hope In The Dark
In one of our workshops, I ask the participants what their breaking point is… Written by Jonathan McGuire
“My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever.” ~Psalms 73:26
In one of our workshops, I ask the participants what their breaking point is and go on to share about a time when I had personally reached my breaking point. I had reached that point where the stressors of raising a child with special needs, dealing with my own health issues and other factors lead to that moment of brokenness.
I find myself reflecting back on this moment, as I am again struggling with health issues and hovering on the brink of exhaustion and vacillating between hopeful and overwhelmed as I consider all that needs to be done in so many areas of life.
Do you know what I mean? As a parent and a caregiver, it is not uncommon to feel this way. You have so many stressors coming on you from what seems like every direction. Believe me, I get it.
I recently read the following from Craig Groeschel’s You Version “Hope in the Dark” plan,
“The world may seem upside down, but the Lord is still there.
When you have nowhere else to turn, when your own ideas and resources have evaporated, when your control over a situation is in shambles, God is still there. When your knees ache from kneeling in prayer but you can’t tell if he’s even listening, God is still there.
No matter what happens in your life, the Lord is in his holy temple.”
The word pictures that Pastor Craig used so fittingly describe the parent’s journey in special needs and disabilities. Our worlds do often seem upside down, resources seem to evaporate before our eyes and it often seems like we have no control.
I love his conclusion though. God is still there.
When your health fails, and your spirit grows weak, don’t give up. On those days when you don’t know how you are going to pay for specific therapies or house modifications, you don’t feel like you can face the stressors of the coming holidays or you are scared to think about your child’s future… Be encouraged, God is still there.
Written by Jonathan McGuire
Jonathan McGuire is the father of two sons and the co-founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disability on a spiritual and emotional level. You can follow Hope Anew on Facebook here.
Hope Anew has launched the Hope Anew Online Community and would love to have you be a part of it! You can learn more at www.HopeAnew.com.
OK, It's Safe to Cross Now
Early mornings near my home are fairly busy, as there are two schools both within a few blocks, one an elementary school, the other, the junior high where my autistic son attends. Written by John Felageller
“Even though I walk through the valley of the shadow of death, I will fear no evil,
for you are with me; your rod and your staff, they comfort me.” (Psalm 23:4)
Early mornings near my home are fairly busy, as there are two schools both within a few blocks, one an elementary school, the other, the junior high where my autistic son attends.
We live on a corner and we frequently see both lines of cars and buses and droves of students on bikes and on foot walking down the street, specifically to the junior high. Since I usually walk the dog about the time everyone is frantically trying to make it there on time, I get an up close view of all of the daily activity.
Recently I was walking the dog on just such a morning when, as I was crossing the street to get to the park, I noticed a couple of girls from the junior high standing on the corner waiting. I normally might not have cared, but being both a parent and a former teacher, my antennae go up when I see adolescents just standing around. My brain goes to concerning thoughts related to bad behavior, like are they up to something, is there some concerning reason why they would just be standing there, why are they standing on that corner after all?
I walked down the block to the point I normally go to with the dog, and when I came back I noticed they were still standing there, but this time I kept an eye on them as I started to cross the street back to my block. However this time I also noticed a special needs student from my son’s classroom walking down the street heading towards school as well. To my sheer amazement, the two girls, who my imagination let me go crazy with ideas of suspicion, now acknowledged the girl as she was walking. The girl, who my son has attended school with since kindergarten and who’s family we know well, was apparently friends with the two girls standing on the corner. And then, I was truly blown away, as I heard one of the girls tell my son’s classmate, “Its ok to cross now, you can walk over.” The girls weren’t up to no good, they were actually waiting for the other girl and then watching the street so that she could cross it safely.
This was a small but profound event at the beginning of my day that I couldn’t explain, but made me, as a special needs parent, feel so good about the school my son attends and the community we live in.
In the same way, I was reminded of how that small experience mimics our relationship with God, how so many times we find ourselves walking, seemingly alone through life, and frequently coming up to a place of potential danger. But somehow we have a protector waiting for us on the other side, watching us, guiding us, and speaking to us about the times when it is safe to cross, and sometimes using the most unlikeliest of crossing guards.
Written by John Felageller
John lives in Northbrook, IL with his wife Elizabeth and his son Christopher (ASD), and is currently a Social Programs Manager at Total Link 2 Community in Chicago, IL. He is a regular contributor to Key Ministry’s Special Needs Family blog, and is both a live presenter and on Key Ministry’s Facebook page. He coordinates a Special Needs Dads meet-up in his community and works with several other local Special Needs organizations that serve both parents and children.
Connect with John on his Facebook page here.
Rejoicing Vs. Grieving
If there was ever a verse in the Bible that I felt like taking the white out marker to, this at one point may have been right at the top of the list. Written by Jonathan McGuire
“Rejoice in the Lord always. I will say it again: Rejoice!”
~ Philippians 4:4
If there was ever a verse in the Bible that I felt like taking the white out marker to, this at one point may have been right at the top of the list. Let’s be real, when we are in the midst of a hard time this probably isn’t our go-to scripture passage. As a side note, if you are coming alongside someone who is struggling, this shouldn’t be your go-to scripture to encourage them.
When we are struggling, we are often told to REJOICE as if that is an exclusive emotion and that we shouldn’t grieve the loss.
Did you know that you can feel multiple emotions at once?
At times, these emotions can even seem contradictory to each other. For example, we have the word, “bittersweet.” Can you think of a time that was bittersweet to you? It might be the completion of a therapy but the loss of a therapist. It may have been the graduation of a child or when a friend had to move out of state for a job.
There is a focus that is often missed when a caring soul tells us to rejoice. The focus that is missed is, “in the Lord.” No matter how bad things get, I can look at my heavenly Father and rejoice in who He is. I can rejoice in His character, His power, that even when it feels like we are alone…He never leaves us. I can rejoice that someday I will be with Him in heaven and the effects of a sin-cursed world will no longer wreak havoc on those I love.
While I am rejoicing in the Lord, I can still grieve a particular situation. I can grieve that milestone my child didn’t reach. I can grieve the therapist who left that they connected with. I can grieve the additional struggles and pain that my child may experience in life due to the effects of their disability.
In fact, we need to grieve those things.
There have been times when I have asked couples how they coped with various difficult situations in their journey through disability and they replied with they just chose to rejoice. I hate to be the bearer of bad news but that is just called denial. This is one of the official stages of grief and can last for a short period, for decades, or can come and go.
When we live in the land of denial and refuse to move forward in the grieving process, it will re-emerge eventually. It may re-emerge as negative emotions or even health issues.
If you find yourself in this place of grieving, don’t feel guilty or like it means that your faith isn’t strong. It is part of the journey and it is part of healing.
As I close, I want to encourage you to REJOICE…IN THE LORD. However, when you rejoice in the Lord, know that He is with you as you journey through the land of grief.
What is one character trait of God that you can praise Him for today?
Written by Jonathan McGuire
Jonathan McGuire is the father of two sons and the co-founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disability on a spiritual and emotional level. You can follow Hope Anew on Facebook here.
Hope Anew has launched the Hope Anew Online Community and would love to have you be a part of it! You can learn more at www.HopeAnew.com.
A Note For The Brokenhearted
I keep waiting for it to get easier. For the sting of this disease to ease. Written by Laurisa Ballew
I keep waiting for it to get easier. For the sting of this disease to ease.
One of my daughters is a sensitive soul. She feels things deeply. She will skin her knee and just cry so hard about it. (for a day. mmmkay?) And then in the days to come will continue to tell me it hurts, she will wince, guard it, and even weeks later she will point out the mostly healed spot and recount the pain of it. And try to con me into giving her another princess band-aid. I mostly ignore her- count it as drama. Because let’s be honest it partially is, but it is also how she is affected by pain. It really bothers her. And then with the next wound it is the same. Over and over again, she doesn’t seem to get much tougher.
And that is about how I feel about my child having Tuberous Sclerosis. There has been so much grieving with this disease. I find myself waiting to settle into this being my life. To be content with this reality. In some ways I have found peace with a lot of things. And in so many other ways the core of my being opposes these struggles head on. It makes me feel conflicted. I want to walk this out peacefully. To find Joy in the crevices of my broken heart. To let life and love and experience pour out of its cracked places. But that is a hard things to do.
Sometimes I feel like I am the ‘about healed’, hardly visible skinned knee. You know when the scab is gone, but the new skin is just a darker shade? Not obvious to those around. But when I think I should be feeling better, a remembering-pain from the depths of my soul comes rushing forward.
Time and time again I come back to this. If God cares about me even half as much as I care about my daughter, if he feels the pain of the deep wounds like I feel hers. If he mourns with me like I mourn with her. If he really is the Good God that I think he is, then a few things must be true
I am not even slightly alone in my pain. There is a real, powerful God standing with me through all of this.
The brokenness of this world was not God’s Plan, but he will work through it. He has worked through it. He has sent His Son, and someday all the brokenness will be healed. My favorite children’s bible says this about Jesus coming back “Everything sad will come untrue. Even death is going to die! And he will wipe every tear from every eye. Yes, the rescuer will come. Look for him. Watch for him. Wait for him. HE WILL COME! I promise.” Just take a minute and let that wash over your broken heart.
My friends- There is no shame in broken places. Brokenness is the thread that connects us all. There is holiness in standing with each other in these moments.
Recently a friend shared with me a Japanese art form called Kintsugi. It is where value is still seen in brokenness. And broken pottery is fixed with a gold lacquer.
The bowl is not useless because of its brokenness. Instead its brokenness is highlighted, seen as a part of its history, part of its beauty.
May these broken places in my life not shatter me. Or render me useless. But instead become a golden bond of character. Of strength. And beauty.
Peace and love to you dear friends as we stand together in the beauty of our broken.
Written by Laurisa Ballew
Laurisa Ballew is a nurse by trade and mother to a special needs child by fate. She fiercely believes hope and grief walk hand in hand in life, and that storytelling is the universal language that connects us all. Laurisa has three daughters and writes about the constant humility of parenting in her blog Raising A Sisterhood.
Asking Why
Every parent of an autistic child asks why. Why did this happen to my child? Why did this happen to me? Why is my child acting this way? Why can’t I have one normal day? Why, God? Why? Written by Kevin O’Brien
I have always been a firm believer in starting with why. I think that it’s the most fundamental human question and far too often we simply drift through life trying to keep ourselves busy or amused or whatever just so we don’t have to face that question.
Every parent of an autistic child asks why. Why did this happen to my child? Why did this happen to me? Why is my child acting this way? Why can’t I have one normal day? Why, God? Why? (With alternating exasperation and rage, I find.)
I wish I had a good answer. I don’t. But then I am not a finished product yet, and neither is my autistic son. Sometimes there simply isn’t a why, at least not one we can get to in the here and now.
In my self-pitying moments I wonder if God ever asks himself why about us. I have multiple theological degrees. I can give you the arguments and the clichés about God not being surprised by the dumb things that we do.
But then I think about Matthew’s account of Jesus on the cross and that most disturbing question: “About three in the afternoon Jesus cried out in a loud voice, ‘Eli, Eli, lema sabachthani?’ (which means ‘My God, my God, why have you forsaken me?’)” (Matthew 27:46, NIV).
Jesus asks why. He knows the answer. That’s not the point. The point is that God himself, the second person of the Trinity, knows such extreme agony, such extreme suffering that he calls out, “WHY?!” to the Father.
For most of us, when it comes to our kids, when it comes to the pain in our spouses and all of the lost hopes and dreams, “why” is less about a good reason than it is a demand that this all matters somehow, that it means something. To be sure, we would like reasons too.
I am learning to come at why from new angles. And I am learning that sometimes why is less important than I thought. Sometimes you need to get in there and do even when you don’t have all of the right answers or even half of the information that you feel like you need.
As much as I want it, Nate can’t give me a why. He can’t explain it. And he gives few clues to figure it out. And that is perhaps the hardest part. Sometimes you have to break things down into component parts to figure out how they fit together, to get to why. I would have never thought that years of oil and sawdust and hammers and wrenches and watching my father tear apart cars and rebuild garage doors from scratch—and well, a hundred other things I don’t remember—would help me to understand my son. I never would have thought that it might take a son with autism to jump-start me from being paralyzed by why and start doing something.
Jesus asked the Father why.
The answer was us—was me.
Which means that He is with us through all of our whys.
Adapted from the chapter “Why Versus What” in Life on the Spectrum.
Written by Kevin O’Brien
Kevin O’Brien is a freelance writer and marketing consultant living in the far western suburbs of Chicago with his wife, 3 children, a dog, and a cat. Kevin’s middle son, Nathan, is autistic. He is a contributing author to Life on the Spectrum, a book to encourage and inspire parents and caregivers of children with autism, by parents of children on the autism spectrum An ordained minister and veteran of the Christian publishing industry, he has helped develop, write content for, launch and market several Bibles. Kevin loves to learn new things, and would prefer to spend his time reading, speaking, writing, woodworking and watching the Chicago Blackhawks. He occasionally tweets @kevinrobrienthm and can be found online at www.treadingthedawn.com .
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When Things Don't Go As Planned
It was one of those mornings. Our car was in the shop. The evening before, they called to let me know it was ready to be picked up. Written by Jonathan McGuire
It was one of those mornings. Our car was in the shop. The evening before, they called to let me know it was ready to be picked up. When they called, I asked, “Were there any other issues?” They promptly replied, “No,” and I went to pick it up the next morning, excited that we would have our car back. Twenty minutes later, as I neared home, I noticed a sound like driving over rumble strips on the side of the road, only there were no rumble strips so back to the repair shop I went.
It would have been easy for me to turn the drive back to the repair shop into a pity party, grow angry with them for not catching the problem and to get upset about the time I had lost.
Instead, I had to consciously choose to reframe the situation. Through this process I was able to praise God that:
The problem occurred immediately so it was not a mystery what the issue was.
It didn’t happen in the upcoming weeks as we traveled for different speaking engagements.
Family was loaning us a vehicle so we were not stranded.
The shop was ethical and told me to bring the car back in immediately for them to look at it.
As I processed this, I felt the tension reduce. I was able to arrive at the shop and talk with the manager in a way that was glorifying to God as opposed to my natural response in the situation.
While I was stressed about how the delay in schedule would impact the rest of my day, I didn’t carry the tension of anger, bitterness and resentment with me boiling under the surface, building up pressure until it exploded and later burned an innocent bystander.
This reframing is a difficult process, requires the help of the Holy Spirit and I have to take it moment by moment. In all truth, my success rate is not real high but God is gracious and it’s exciting to see growth…as incremental as it may be.
What do you have going on right now that you can reframe? Are you battling the school for services your child needs? Is there a therapy or service you want for your child, but can’t access because of the expense? Are you discouraged from constant caregiving? How would it impact you emotionally, mentally, physically and spiritually if you were able to reframe that situation?
“And now, dear brothers and sisters, one final thing. Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise.”
Philippians 4:8 (NLT)
Written by Jonathan McGuire
Jonathan McGuire is the father of two sons and the co-founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disability on a spiritual and emotional level. You can follow Hope Anew on Facebook here.
15 Scriptures For Overcoming Lies, Fears And Doubts
When we go through dark, lonely times it’s easy for our thinking to get cloudy, to forget the things we know, and to get confused. It’s easy to start believing lies instead of truth. Written by Sarah McGuire
When we go through dark, lonely times it’s easy for our thinking to get cloudy, to forget the things we know, and to get confused. It’s easy to start believing lies instead of truth.
~ Sarah McGuire
During my doubting, fighting-daily-for-faith years, I started a list of thoughts I struggled with and Bible verses that I could go to in order to combat those lies or struggles. This was nothing formal or beautifully done, just a long, narrow sheet of paper torn from my magnetic grocery list pad.
When I came across a verse that spoke to me and could help with a thought I struggled with, I’d jot down the thought and the coordinating verse reference. I left it in my Bible so it was handy to add to it. As it grew over months and years, I had my own personalized list of lie-combatting, confusion-clearing, truth-telling, uplifting Scriptures.
Here is my list, maybe you struggle with some of the same thoughts I did and you’ll find some of these helpful. Some were quite personal and aren’t normally references I would associate the with topic, but the day I read them, it was clear God’s Holy Spirit was speaking it to me, so I put it on my list.
I am valuable – Mt. 10: 30-31; Isa 43:4; Zeph 3:17
It’s more than I can bear. I can’t do it (overwhelmed, inadequate, worn out) – Zech 4:6, Deut 31:8, Ps 37:5, 2 Cor 1:8-9, Isa 43:2
God may not watch out for me in this situation – Haggai 2:19, 23
Troubled, worried, stressed – John 14:1
Overwhelmed by evil or suffering – Phil 4:8
In need of help – Isa 30:18
God has forgotten me – Isa 40:27, Isa 49:14-16
If I seek God, I’ll find God – Isa 65:24
God isn’t in charge of this world – Daniel 4:17, 25, 32
Worried about needs – Mt 6: 33, Rom 8:32, Isa 65:24, Phil 4:19
God always hears me – Jn 11:41, 42
Not sure what to do – Ps 32:8
I’m broken – 2 Cor 1:8-9
God isn’t listening or acting – Mt 6:8, 2 Chron 7:14, Lk 11:9, 10
It’s useless to pray – James 5:16
None of us are perfectly the same. Satan is good at finding our vulnerable spots and the lies that will have the greatest power in our lives. I encourage you to start your own list and let God speak His truth into your life.
Written by Sarah McGuire
3 Ways To Focus On How Our Children Are Fearfully and Wonderfully Made
We love our children fiercely. We would do anything to care for them and provide for all their additional needs. Though our children can feel like our whole world, there are also times it is easy to wish things were different for them. Written by Jenn Soehnlin
We love our children fiercely. We would do anything to care for them and provide for all their additional needs. Though our children can feel like our whole world, there are also times it is easy to wish things were different for them. To compare them to other children and wish things came easier. To focus on their health and their weaknesses and struggles and additional needs. To feel like there’s no end to the tunnel of appointments and accommodations and needs our children will have. And we lose sight of the fact that our child is “fearfully and wonderfully made” (Psalm 139:14).
It has taken me years of parenting two children with special needs to stop focusing so much on their delays and differences and weaknesses and instead focus on just how uniquely and beautifully God made them.
It’s a mindset shift I’m still working on today, but one that has helped my heart immensely. It has allowed me to enjoy my children more and to be proud to be their mother. There are three ways in particular that have helped me focus on my children more like I imagine God does.
First – Focus on Your Child’s Victories
It’s so easy to see how far our child has to go to catch up with their peers. To see how slow the progress can be sometimes. But we have to be intentional to focus on the positive. To focus on each and every victory, no matter how small it may seem.
In the Genesis account of God creating the world, He said “it was good,” after everything He created. He didn’t just say “it was good,” when it was all done. We must do that too. Celebrate every milestone and every hard-fought inch in-between. After all, they are all victories and all deserve celebration.
And we shouldn’t just celebrate those developmental victories, but spiritual ones as well. When you see your child exhibiting any of the fruit of the Spirit, praise and celebrate that. When you see your child grasp a deeper understanding of God’s love for them, celebrate that.
I’m sure God is celebrating right along with us. He knows how hard our children have worked on each and every skill and He cares about the things we care about.
Reflection: What are some of the latest victories you’ve seen in your child(ren)?
Second – Focus on Your Child’s Heart
“But the Lord said to Samuel, “Do not consider his appearance or his height, for I have rejected him. The Lord does not look at the things man looks at. Man looks at the outward appearance, but the Lord looks at the heart,” (1 Samuel 16:7).
While Jesse didn’t think his youngest son looked like a king, and in fact didn’t even have David come in from tending the sheep to present to Jesse to be a future king, David’s heart was the one that God knew was right for the job.
It is easy to focus on our children’s outward appearance, their development, their health, their behaviors, and their struggles, and not on their heart. To not focus on those personality traits and strengths and gifts and passions that are unique to them. To not see the fruit of the spirit they exhibit in their lives. To not see how they give and receive love. To not see and nurture those deeper aspects of who they are that makes them so unique, so wonderful, and such a blessing to our lives.
Reflection: In what ways do you focus more on your child’s outward appearance than you do their heart? What can you do to show your child(ren) how much you love their heart?
Third – Focus on Your Child’s Gifts and Passions
In Exodus 31:1-6 God tells Moses about how He designed and gifted Bezalei. God says “I have filled him with the Spirit of God, with skill, ability and knowledge in all kinds of crafts-to make artistic designs for work in gold, silver and bronze, to cut and set stones, to work in wood, and to engage in all kinds of craftsmanship.” You can sense the pride in God’s voice as He brags about Bezalei using his gifts and skills. This was the man that God had chosen to build His holy tabernacle, where God’s presence would reside.
When you have a child with special needs, it’s easy to want to focus on the areas they need to improve, rather than focus on their strengths and passions and giftings. Our children have gifts and talents that God wants us to help nurture and steward in our children.
They have something awesome to offer the kingdom of God too. And we have the honor of coming alongside them and helping them identify and use and grow their gifts and skills and passions.
Reflection: What are some of your child(ren)’s gifts and passions?
What can you do to nurture those gifts and passions?
* * *
It’s an intentional mindset shift, choosing to focus on these aspects of our children when it can be so easy to focus on other things. But by choosing to focus on seeing our children as God does, it will help you find the beauty in the way God uniquely, fearfully, and wonderfully crafted your child(ren).
Reflection: Which of these ways do you find easiest to focus on your child(ren)?
Which ways do you want to be more intentional in focusing on your child(ren) like God does?
Written by Jenn Soehnlin
Jenn Soehnlin is the mother of two young boys who are precious blessings and who both have special needs. She is the author of Embracing This Special Life: Learning to Flourish as a Mother of a Child with Special Needs.
Jenn enjoys blogging about faith, praying scripture, and special needs parenting at www.embracing.life.
When Our Faith Falters We Need Faith-filled Friends
There were times I couldn’t muster the faith I knew I needed. I wanted to have faith. I wanted to trust God. But, I didn’t. Written by Sarah McGuire
If you read You Are Not Alone, you know that I had some significant struggles with questions about God and my faith. There were times I couldn’t muster the faith I knew I needed. I wanted to have faith. I wanted to trust God. But, I didn’t.
Yes, I trusted Him for my eternal salvation, but I didn’t trust Him for how my daily life was unfolding. I felt ashamed. I knew where I wanted to be – at peace and rest in His arms, not worrying about the things of daily life, because He’s got this! But I couldn’t seem to get there on my own.
I claimed, “I walk by faith and not by sight” and said it a hundred times per day some days. Reminding myself that walking by faith doesn’t mean everything works out or makes sense, yet I could trust God anyway. He has a plan. But in reality, I felt more like, “I stumble blindly.” Period. The end.
This bring me to Mark 2: 1-12. Jesus is preaching at a house and so many people come to see him there’s no more room, not even outside the door.
You’ve been there, right? An 18-year waiting list for services your child needs. A doctor or therapy that might help, but it’s too expensive and insurance doesn’t cover it. You need rest SO badly but can’t access respite services. There’s help in view, but you can’t get to it.
Back to Mark 2. A paralyzed man arrives carried on a mat by four men. He couldn’t get to Jesus on his own, so four people carried him! I don’t know how it came about, maybe he asked them to carry him or maybe he protested the whole way, “Put me down. I don’t want to be a bother. I’ll be such an inconvenience.” We don’t know.
They arrived to find the house where Jesus was filled to overflowing. Did his helpers stop there? No. They made a hole through the roof and lowered the man down right in front of Jesus. “Seeing their faith Jesus said to the paralyzed man, ‘My child, your sins are forgiven.’” Because of the religious teachers who were present and their thinking that was a blasphemous statement, Jesus went on to heal the man physically as well!
The phrase that stands out to me in this recounting is, “Seeing their faith…”. “Their,” plural, not “the man’s” or “his” faith, but “their faith”. Whether this indicates all five of them or not, I don’t know. But it does refer to more than one of them. Whether it applies to the man who was paralyzed or only to his helpers, I do not know.
What I do know is that the faith of the man’s helpers played a substantial part in the man being forgiven of his sins and physically healed. Sometimes, when our faith is weak, we need to depend on the faith of those around us. We need to let their faith carry us for a time.
Do you have faithful friends who can speak words of encouraging truth, said with grace, to you? Do you have friends around you, who, when you struggle in your faith, can pick you up on your mat and carry you where you need to go? That is what Christian community is all about! If you don’t have that or don’t have enough of that, come check out the Hope Anew Online Community and let’s walk this parenting kids with disabilities journey together!
Written by Sarah McGuire
You Are Not Alone – Join a Group that “Gets It!”
A friend looked at me and said, “Your whole faith foundation is shaking, as if you have no firm ground to stand on, isn’t it?” Written by Sarah McGuire
A friend looked at me and said, “Your whole faith foundation is shaking, as if you have no firm ground to stand on, isn’t it?” She’s the only one who knew and I hadn’t told her. I was so fearful others would find out I was questioning God and the very building blocks of my faith in Him. I was so ashamed I had these questions and doubts. My relationship with God had been my entire life. It had shaped my education, life goals, and daily rhythms. And now, I didn’t know what was true anymore.
Oh, I knew the book answers. I had graduated top of my class with a B.A. in Bible/Theology and another with a M.A. in Biblical Counseling. I went to a good Bible-teaching church, but it wasn’t meeting me where I was at. It didn’t get to the practical daily life questions that had become my struggle in the two years since my son with additional needs had been born and my world had flipped upside down. I felt so alone. Alone with my questions. Big, deep, scary God-questions. Doubts. Fears. Struggles. Life circumstances with no apparent answers. No way out.
My friend promised to pray for me, no judgement, just loving concern. That’s the best response she could have given. My questions were so deep that quick, simple answers were not going to solve them. It’s been over ten years since that conversation. I spent many of those years wrestling with God. I’ve found the answers to my faith questions and my relationship with God is stronger and truer than it was before.
As my husband, Jonathan, and I have talked with other parents of kids with disabilities or special needs, we’ve learned that I was definitely not alone with my questions and struggles. Questions and struggles not only in relation to God, but also in relation to how to navigate this life as a parent with a child who has additional needs. But, who do we go to with our questions? Who do we go to for support on days when life is overwhelming and often others just don’t “get it”?
Hope Anew is launching an online community for parents of kids with disabilities or special needs. A laugh together, cry together, pray together community.
Some features of the community include:
Forums/Chat room
Subgroups for more specific areas of interest (residential care, adoption, etc)
Quarterly master classes
Soul Care events with sharing and prayer
Answers to questions that can’t be googled
Monthly themes related to parenting kids with additional needs
And more…
Come join us in the Hope Anew Online Community, where together we are building the most encouraging, real, hope-filled way for parents of children (of all ages) impacted by disabilities or special needs to engage with a group that “gets it!”
For more information go to www.HopeAnew.com. You can also find us on Facebook and can glean from others who have walked this path on the Hope Anew Disability Podcast.
Written by Sarah McGuire
Preaching The Gospel To Yourself
As parents of children with special needs we all have been on the receiving end of biblical clichés that often hurt more than they do good. Written by Laurisa Ballew
As parents of children with special needs we all have been on the receiving end of biblical clichés that often hurt more than they do good. They come from well-meaning individuals, but instead of sweet promises that the Bible holds, they feel like heavy words. Words that often leave us feeling guilty or less than enough. “God will not give you more than you can handle” is one of my favorite phrases to hate. While I do believe this is true when it comes to TEMPTATION like the verse says in context, this doesn’t apply to the children that we have been given.
My daughter is often more than I am capable of handling. Caring for her in the way she needs is way beyond my abilities, and I am constantly falling short. So this verse, if I took it the way people say it, makes me feel like I just need to do better, since it implies I can handle it since God gave it to me.
In 2 Corinthians 12 God says, “My grace is sufficient for you, my power made perfect in weakness. Therefore, I will boast all the more in my weaknesses so that Christ’s power may rest on me.” THIS is GOOD NEWS! And the better news is that the bible is FULL of these life-giving promises.
When I was a newly married women I had a friend from church who presented the idea of “preaching the gospel to yourself.” I was going through a hard time and so it was something I started practicing. It is a pretty simple tool I have used over the years to keep myself rooted in what the bible ACTUALLY SAYS and to remained encouraged even in the hardest of times.
So how do we preach the Gospel to ourselves? I start by sitting down with my Bible and a notebook. Then, I go through a few passages and simply write out the promises held in it. This is really easily done in Psalms, but it truly works anywhere you are reading. The point is being intentional about writing these passages out and having them to fall back on when the hard times come.
For the purpose of this blog I decided to use a Psalm to pull a few promises from.
Psalm 9.
9- The Lord is a refuge for the oppressed, a stronghold in times of trouble.
10- Those who know your name trust in you, for you Lord have never forsaken those who seek you.
12- He does not ignore the cries of the afflicted.
16- The Lord is known by his acts of Justice.
18- God will never forget the needy; the hope of the afflicted will never perish.
In living this “Chronic Life” we must be firmly rooted in Christ. Discouragement is real, and ready to become a true thorn in our sides. Taking a few minutes daily to ground ourselves and remind ourselves who God is, and what His word says, helps remind us we are not alone in the brokenness of the world.
Written by Laurisa Ballew
Laurisa Ballew is a nurse by trade and mother to a special needs child by fate. She fiercely believes hope and grief walk hand in hand in life, and that storytelling is the universal language that connects us all. Laurisa has three daughters and writes about the constant humility of parenting in her blog Raising A Sisterhood.
When I Am Not Enough
When I think back on the hardest days and years of our son’s journey, I recall wanting God’s help, expecting His help, waiting for His help while all the time trying to solve all the problems and carry all the burdens on my own. Written by Sarah McGuire
This morning my Bible reading found me in Psalm 34. I sometimes will read a Psalm and circle the attributes or roles of God that I see throughout the Psalm and note it in the margin. I don’t do this every time I read the Bible, but that’s what I was doing this morning. I’m only 34 chapters into Psalms, but as I’m sure you could guess, the same ones keep popping up again and again. Some of the most common themes so far are: helper, rescuer, defender, protector, fortress, refuge, guide, strength, unfailing love, holy, trustworthy, faithful, compassion, ruler, judge, and more.
Today, as I was reading, something stood out that hadn’t stood out to me so far in my Psalm reading. Let me quote a few parts and see if you pick up on it too.
“I prayed…he answered…he freed.” v. 4
“Those who look to him for help will be radiant with joy;” v. 5
“I prayed, and the LORD listened; he saved…” v. 6
“Those who trust in the LORD will lack no good thing.” v. 10
“The LORD hears his people when they call to him for help. He rescues…” v. 17
“No one who takes refuge in him will be condemned.” v. 22
In each of these, it is the individual who goes to God first, “I prayed” “…who look to him.” “…when they call to him…” “…who takes refuge in him…”, before the need is heard, the rescue is realized, the freedom given, the fears allayed, the joy radiating, the condemnation averted.
God didn’t step in and say, “I see this is a problem, let me take care of that for you.” No, He waited for the person to bring it to Him in prayer, look to Him for help, trust Him, or take refuge in Him.
That last one, “…takes refuge in Him…” brought to mind the verse “The name of the LORD is a strong tower, the righteous run into it and they are saved” Ps. 18:10. I got a little cartoon video in my head of a medieval stone tower running to cover and shelter a person and how silly that would be. No, the person (a soldier in the cartoon video in my head) chooses to run to the tower for safety.
When I think back on the hardest days and years of our son’s journey, I recall wanting God’s help, expecting His help, waiting for His help while all the time trying to solve all the problems and carry all the burdens on my own. I don’t remember asking for His help or moving to Him for His help and shelter until I completely exhausted myself and physically broke. I very distinctly remember asking for His help that day and the days following, when I was at the end of myself.
God doesn’t always answer right away and He may not always answer in the way we want things to be answered. But, sometimes, He’s just waiting for us to come to the end of ourselves and to look to Him.
Sarah McGuire is the Mom of two boys and co-founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disability on a spiritual and emotional level. You can follow Hope Anew on Facebook here.
Hope Anew is launching a new online community October 1! You can check it out at www.HopeAnew.com.
Diagnosis, A Defining Moment
I remember the moment perfectly. I was a counselor and was at a Burger King with a client when I heard the news about the planes hitting the twin towers in New York. The rest of that day, my role was to help my clients process their own fears as the news unfolded. Written by Jonathan McGuire
I remember the moment perfectly. I was a counselor and was at a Burger King with a client when I heard the news about the planes hitting the twin towers in New York. The rest of that day, my role was to help my clients process their own fears as the news unfolded. Coming alongside the student who had hidden under his desk and was scared to come out and checking in with the rest of my families to see how they were doing.
There was a unification in our country as we mourned with the families impacted and we wanted justice. There was a time when it was no longer taboo to talk about God and how He comes alongside us.
The pain has faded for many and except for a posters on 9/11 saying “We Will Remember”, life has returned to normal for those who were not directly impacted.
For those of us with a child impacted by disability, there is another date that is cemented in our minds. We each have our own twin towers moment. That moment when our world came crashing down. My twin towers moment began with Sarah telling me, “I think our son has autism.” The rest of the conversation is a bit of a blur to me as she walked me through why she thought Jordan was autistic but I do remember the emotions.
I remember being flooded with denial and thinking that she was over-reacting and must be wrong. I remember the fear of the unknown and what it would mean for his future. I remember the feelings of being overwhelmed and the sadness that came with wondering if Sarah was right.
After Sarah shared this with me, I went into work the next morning and sat down in the office of a trusted colleague who had a grandson that was diagnosed with autism. When he asked how I was, the first words out of my mouth were, “Sarah thinks Jordan has autism.” We talked, he listened and I went back to work grieving and eventually building a new normal, and a new dream.
If you and I were to sit down together, I bet you could tell me exactly when your child was diagnosed, where you were and how you felt. You could tell me what life has been like since then and about the people who were there for you in the beginning and who it is that still comes alongside you.
You may still get a sense of anxiety and panic as you are in situations that bring back those memories. You may still be in that place of grieving and asking God those hard questions. That’s okay. Someday, you will be able to dream a different dream too.
Healing will come but we will always remember.
“I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.”
Ephesians 3:16-19 (NIV)
Written by Jonathan McGuire
Jonathan McGuire is the father of two sons and the co-founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disability on a spiritual and emotional level. You can follow Hope Anew on Facebook here.
Can We Play?
This past Labor Day Weekend, while my wife was busily preparing for the start of her teaching year, I had my son all to myself for a Saturday afternoon. Written by John Felageller
“...Truly, I say to you, unless you turn and become like children, you will never enter the kingdom of heaven.” (Matt. 18:3, ESV)
This past Labor Day Weekend, while my wife was busily preparing for the start of her teaching year, I had my son all to myself for a Saturday afternoon. The weather was nice and we had all the time we wanted, so I decided to take him to a playground designed for Special Needs Children in a suburb about an hour drive from us. I had seen postings from other parents on social media about this park, and after looking at a bunch of the pictures shown, I thought it was perfect. What made the park unique was that all of the playground equipment had been designed to be adaptable for any type of physical disability. There were ramps on the climbing equipment, adaptive swings on zip-lines, adaptive seesaws with actual seats, and the entire surface was soft rubber.
Although I was excited to bring my son here, I admittedly had some anxiety as I usually do when bringing him to any playground, especially a new one. My son, of course, has autism, is non verbal, and has a sensory disorder to the point where he constantly seeks input, frequently banging on slides or other equipment. This of course means that he usually gets looks from the kids around him, even the littlest ones, and many times kids will just keep their distance from him. While he doesn’t seem to mind, and now being eleven we have become used to many of these experiences, my heart still breaks a little any time we have an “encounter” at the park. I certainly hoped that this park, being designed with Special Needs in mind, would be a welcoming environment.
I just wanted to bring my son to an outdoor space where he could just be himself and I could not only be more comfortable with him physically safe, but also with being emotionally safe.
When we arrived, I noticed there were only a few cars in the lot, and therefore it was not busy, which is a welcome sign since that means less kids to have a bad interaction with. Upon walking into the playground I was more than pleasantly surprised with the layout and the equipment, and was glad to see other special needs kids both younger ones and adolescents enjoying the park.
It didn’t take long for my son to come into the space of a teenage girl on one of the equipment ramps, and while he kept his distance, the mom of the girl started chatting with me. She wasn’t judgmental or puzzled, she had a smile on her face as she engaged me with friendly conversation about my son and his condition. I shared about his autism and communication issues, she shared that her daughter had Angelman’s syndrome, and was also non verbal, though like my son had some limited speech. We both commented on how grateful we were for the park and how great it was that something like this existed, and there was just a sense of acceptance that I really don’t get to experience much.
After my son got visibly tired out and too hot to keep playing, we made our way out of the playground and back to the car, taking our leisurely drive back home, having had a wonderful time playing. That was the whole miracle of this afternoon, the fact that my son was welcomed, without condition, by total strangers, who didn’t just tolerate him, they accepted him, and wanted him to feel like he belonged. This was our little slice of heaven for the day, a place where my child could be a child, play and be himself, and while I watched I noticed my heart heal itself just a little bit that day.
Written by John Felageller
