Four Ways to Become a More Satisfied Special Needs Dad

We’ve been celebrating dads this past weekend. And so we should. They have a uniquely tough, demanding, relentless, and nuanced role in parenting. And when they have a child with extra needs, they bear a role that can be intimidating, confusing, overwhelming, scary, and feel relatively thankless.

I hear stories all the time from parents with children impacted by disability and/or complex health issues. Common themes in the experiences of dads include worry about their adequacy in contributing to the wellbeing of their families and concern about having satisfying connections with their spouse and children.

My hope is to encourage fathers and offer perspective about opportunities in four areas where many struggle.

Get free of your guilt.

When dad is the primary breadwinner, he may spend many hours apart from the direct household responsibilities. This is one factor in why moms and dads process their reactions to disability differently too. For example, if mom is the only one going to doctor appointments and hearing news first-hand with opportunity to ask direct questions, she will have a different awareness level. This will impact her unique timeline for internalizing things like fear and disappointment and may help her to develop discernment and confidence more quickly about specific caregiving responsibilities.

Whatever your circumstances with disability have been, it seems dads wrestle with a different type of guilt than moms do. And from what I hear, many dads are intimidated by all the wonderful things their kids’ moms are doing for their child. Dads carry concerns about present and future provision for the family. If they work long hours, they feel guilty about leaving mom alone with the children. They feel shame about having a way to “escape,” even if it is at work. Some wish they could attend more doctor appointments or wrestle to understand more of the medical or educational jargon.

Dads often want to be more supportive but feel limited.

Healing from guilt starts with taking an honest look at your personal weaknesses and strengths in your situation. (Look as closely at your strengths as you do your weaknesses.) Talk to your spouse about your feelings. Ask your child’s mom to share her view on your strengths and opportunities. (I hope both are learning to frequently express appreciation and affirmation for the value of the other’s role before skipping straight to opportunities.) Identify a couple of untapped opportunities together and consider how you can cooperate in taking a new step toward something for the family that will be mutually satisfying for parents and kids.

This could be as simple as a daily dance party or 10-minute piggyback ride. Fifteen minutes of special “dad time” with your child every day will last forever in their memory and be a heart-swelling gift to their mom too.

Hebrews 4:16
So let us come boldly to the throne of our gracious God. There we will receive his mercy, and we will find grace to help us when we need it most.

Process chronic grief.

Do you experience flares of anger, anxiety, or panic? You are not alone. Particularly since the pandemic, more people than ever are reporting increased stress, fatigue, strained relationships, loneliness, and anxiety-related health issues. With the added responsibilities of being a special needs parent, it is very understandable that you would be struggling with complicated thoughts and emotions.

Have you considered whether your reactions may be related to the way disability or special needs are impacting your life, your family, your future? When you are the parent of a child with high needs or someone relies on you for long-term oversight, there can be a great sense of weight rumbling in your gut. There can be many reasons behind the intense or negative emotions we feel, and it can be difficult to navigate what feels complicated or consuming. It’s worth taking time to understand the true root of our thoughts and feelings. Ambiguous, even mysterious, feelings need a safe space to breathe, to be explored.

Contrary to how many dads feel, it shows courage and strength to seek help. The enemy of your soul would love to see you stay isolated and silent on this front. Yet pushing down nagging thoughts, taunting worries, and ongoing frustrations puts you at risk of future health issues and deteriorating relationships.

Most emotionally and physically healthy parents and marriages impacted by disability are getting counseling where they can unpack complicated layers of their experience. Each person in your family is processing the experience of disability in their unique way and in their own timing. Learning to understand and respect each other is very valuable to each one’s mental health and opens doors for richness in relationships.

Dealing with grief is not easy. Thankfully, you can be processing sorrow and disappointment while also experiencing the joys and delights of fathering. When you allow yourself that vulnerability with God, yourself, and your family, you will discover a rich quality of life that comes only from sharing it. It takes ongoing attention and energy to tend to hard thoughts and emotions. But it is worth it. And it becomes a tremendous gift to your family when you take care of yourself and share your grieving process together.

2 Corinthians 6:4-10 
In everything we do, we show that we are true ministers of God. We patiently endure troubles and hardships and calamities of every kind. We have been beaten, been put in prison, faced angry mobs, worked to exhaustion, endured sleepless nights, and gone without food. We prove ourselves by our purity, our understanding, our patience, our kindness, by the Holy Spirit within us, and by our sincere love. We faithfully preach the truth. God’s power is working in us. We use the weapons of righteousness in the right hand for attack and the left hand for defense. We serve God whether people honor us or despise us, whether they slander us or praise us. We are honest, but they call us impostors. We are ignored, even though we are well known. We live close to death, but we are still alive. We have been beaten, but we have not been killed. Our hearts ache, but we always have joy. We are poor, but we give spiritual riches to others. We own nothing, and yet we have everything.

You can be processing sorrow and disappointment while also experiencing the joys and delights of fathering.

Make connection with your child more important than compliance or developmental progress.

At the end of the day — and at the end of your life, or your child’s life — what will matter more to you, to your child, and to the rest of your family is not how obedient or well-behaved they were, or even how much developmental progress was made, but the quality of relational connections you enjoyed. Maybe you need to read that again?

Every parent delights in seeing their children thriving. We all hope our children will experience blessings of health and reaching their full potential in various ways. But the depth of bond we make with our children and spouses will weigh more than gifts, accomplishments, and any developmental progress that was made.

Slow down. Look your child in their eyes every day. Get to know your child and learn how to enjoy today, this summer, and this year with them. You will never get this season back.

Watch, ask, and learn: What is it like to be you?

Don’t wait to work on your relationship with your child and make memories with them. The simplest encounters you share in the day-to-day moments may become the most profound or influential ones to accumulate meaning for them. Work at it with intentionality and stay available for the cherished things, one day at a time.

Romans 8:38-39
And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow—not even the powers of hell can separate us from God’s love. No power in the sky above or in the earth below—indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord.

Romans 12:16
Live in harmony with each other.

Prioritize the blessing of forgiveness.

Life and relationships are messy. We all make mistakes. We all have regrets. Special needs dads, like any parents, are learning and growing new perspectives about how to lead their complex families. God offers do-overs.

There is life-giving, legacy-building blessing in making amends where there has been conflict or sin in the past. It is never ever too late for reconciliation. No child or parent is too old to experience a relationship freed and refreshed by grace. That means taking a step toward offering forgiveness, even when it isn’t deserved. It also means receiving forgiveness from your child too, even when you don’t feel deserving of it.

There is so much power in a reflective, heart-felt apology. It’s a value parents do well to pass on to their children. There is power from the Holy Spirit to pour out renewal between loved ones. There is power in modeling for the next generation what it looks like to embrace a lifestyle of empathy, humility, and grace.

Offer forgiveness without expectations and allow time for healing to unfold. Just as healing from physical or developmental disabilities can be a process that takes time, so does relational healing unfold in layers. Even if it is just one layer at a time, your steps of faith toward God and others will be multiplied.

1 John 1:9
But if we confess our sins to him, he is faithful and just to forgive us our sins and to cleanse us from all wickedness.

Galatians 6:4
Pay careful attention to your own work, for then you will get the satisfaction of a job well done, and you won’t need to compare yourself to anyone else.

RELATED: The Big Do Over

RELATED: How to Become a Different Dad


Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. She leads a weekly online discussion group welcoming caregivers in families living with disability. Lisa and her husband, Larry, are co-founders of Walk Right In Ministries, a non-profit organization building faith and community with special needs families. They live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome.

Family Update and Thoughts On Memorial Day

Periodic family updates seem to be of interest to readers, and it has been a while since I reported family news. So, after I pivot briefly to reflect on Memorial Day, I’ll turn to some recent highlights of a more personal nature and our transition to summer.

We lost a friend this week. It was a tragic yard accident. Norm was a veteran who very recently turned 82 years old. I can hardly stop thinking about the heartache of his family and their lack of opportunity to say those “good-bye-for-nows.” While they can rejoice with absolute assurance He is with Jesus, their sorrow and loss weigh heavily.

We rarely know the day or the hour. Even when we do, our hearts and minds resist the warning.

On Memorial Weekend, we honor veterans who have passed — whether in active duty or in some other way. We honor their families who shared the sacrifice too, especially when that involved long times apart or concerns about safety. In many cases, each heart bears the sting of multiple goodbyes, long before the final one.

As a mom to someone with disabilities, I’ve heard many people say, “God won’t give you more than you can handle.” I wonder how many times veterans’ loved ones are told that as they wait for a returning solder or grieve one that will never return.

It’s an unfair and unbiblical statement.

The misunderstanding may come from applying 1 Corinthians 10:13 out of context:

No temptation has overtaken you except what is common to mankind.
And God is faithful; he will not let you be tempted beyond what you can bear. 
But when you are tempted, he will also provide a way out so that you can endure it.

It is true that God won’t tempt us with more than we can handle. The promise of this verse is that God will always show us a way to avoid sin. The real issue behind that earlier statement is whether God will allow or send extreme circumstances into our lives that are beyond endurable. In the context of suffering that is not related to sin, God absolutely does allow (or even give) us more than we can handle, at times.

Clearly, life presents times of tremendous heartbreak or overwhelming adversity. Tragedies, losses, suffering, caregiving demands outside of our ability to fix or solve can seem impossible to handle. Jesus, himself, declared that suffering and disability are not about any person’s specific sin (see John 9:1-5). Sickness and death, the broadest sense, are about original sin (as in Adam and Eve) but not necessarily anyone’s personal sin.

RELATED: When Jesus Meets Disability by John Piper

In 2 Corinthians 1:8-11, we get a sense of why God might give us more than we can handle. We can look to a time when Paul was so extremely hard-pressed that he couldn’t imagine living through it:

“We think you ought to know, dear brothers and sisters, about the trouble we went through in the province of Asia. We were crushed and overwhelmed beyond our ability to endure, and we thought we would never live through it. In fact, we expected to die. But as a result, we stopped relying on ourselves and learned to rely only on God, who raises the dead. And he did rescue us from mortal danger, and he will rescue us again. We have placed our confidence in him, and he will continue to rescue us. And you are helping us by praying for us. Then many people will give thanks because God has graciously answered so many prayers for our safety.”

Paul wanted others to learn what he had learned. He wanted it known that hope and endurance are possible. God wants us to learn from Paul that our best confidence comes from Christ alone and that our community of helpers (prayer warriors, most specifically) matter greatly.

Our best confidence comes from Christ alone and that our community of helpers (prayer warriors, most specifically) matter greatly.

It’s worth noting that getting rescued doesn’t always mean protected from death, as it did in this particular case with Paul. Answered prayers can look different than we expect. That’s a conversation for another day. For now, it is enough to say that Jesus’ ultimate rescue mission was to release us from condemnation and eternal death. He is most concerned with our souls. In the meantime, He will provide mercies to our circumstances through mysterious ways and timing. While we wait, and most important of all, He teaches us that we can trust God to get us through the slog.

Paul’s message was that we might, as a matter of fact, be given much more than we can handle so that we can discover confidence in Christ and the value of prayerful community. Even Paul had to get to the end of himself to discover the greatness of God and praying friends.

Our prayers for veterans and soldiers matter. Our prayers for their families matter.

My family fights a kind of battle every day. I do not intend to make comparison to the immense sacrifice our soldiers make at war, but I do want to underscore that suffering and sorrow demand an enormous faith, along with the help of praying friends. And sometimes that means a commitment over many years. For all of us.

No matter how many years have gone by since a veteran has passed, their loved ones still benefit from prayers. Your ongoing prayers for families battling heavy weights of caregiving, complex medical issues, or mental health issues matter too. My family knows this very well, and I want to thank you for praying for us, and others.

As you may know from recent blogs and updates, we have been in a season of extreme sleep deprivation, crisis staff shortage, and tedious medical issues with Carly. We have been desperate for more rest and wisdom on the home front while needing to hire a Ministry Assistant at Walk Right In Ministries (as Deb stepped back this spring to care for her own family).

We tried to recruit help throughout the winter until that process, too, became exhausting. Then we all had Covid in early May. We’ve been living at varying degrees of our wits end. Many times, we have cried out like Paul, “how will we live through this?”

Paul had to get to the end of himself to discover the greatness of God and praying friends.

Thankfully, I can report that Larry and I have each been experiencing fresh perspectives from God’s Word and learning new coping skills. I will not pretend it has been pretty, friends. This has been a messy season emotionally, logistically, spiritually, relationally. I’ve said it before and I’ll say it again, “we’re not perfect but we’re making progress overall, by the grace of God.”

Prayers and community have been game changers. But the opportunity to lean into Jesus more intimately and intentionally shifts us from desperation back toward peace, joy and a rest in the soul.

Mercies in various forms have also come, temporary as some may be. In April and May, there was a disability conference, an extremely caring waitress, a long weekend in Canada’s Niagara area for my high school reunion, and a note with flowers that simply read, “You are not forgotten.”


Praise God we are fully staffed with caregiver support staff until early August (at which time we will be desperately recruiting again). Our daughter Erin will be visiting in early July. Our daughter Alex will be moving somewhere nearby soon (hoping the real estate market settles down for an optimal opportunity).

My imminent aim is to squeeze all the joy and rest out of this summer “honeymoon” with help that I can. I am working on a number of blog articles to queue up for a few weeks.

I am excited this season will include some terrific guest posts for you too. We have a line-up of contributors from the Walk Right In Ministries community including authors and leaders in the disability ministry arena who will be sharing. I know you’re going to enjoy hearing from them. Many of these esteemed folks are, like me, caregivers for loved ones with disabilities. Some even have disabilities themselves. Their expertise and perspectives are so valuable.

All of this will afford me some extra space to enjoy the treats (and chores) of summer and preparation for Jammin’ Pie Fest coming in the fall. That amazing event scheduled for the afternoon of October 2nd will be our first one back since before the pandemic in 2019.

Thank you for reading this far, for caring about us, and for praying for Walk Right In Ministries and the Jamieson family.


Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. She leads a weekly online discussion group welcoming caregivers in families living with disability. Lisa and her husband, Larry, are co-founders of Walk Right In Ministries, a non-profit organization building faith and community with special needs families. They live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome.

Creating Space for Special Siblings

Two in every seven families has at least one member with a disability (US Census Bureau 2007). And an April 2018 report from the Centers for Disease Control and Prevention indicates that 1 in 59 children has been identified with autism spectrum disorder (ASD). These are just two statistics that suggest our churches are filled with individuals from families experiencing special needs—or they should be if they are reflecting the demographics of the communities around them.

Among those affected by the challenges associated with disability are the siblings. It’s fair to say that many special-needs siblings are bringing a myriad of spoken and unspoken needs to their parents and their churches. And this presents us with unique opportunities to connect with siblings in ways that ripple positively into their families, throughout our faith communities, and the world.

CONSIDER SOME EXAMPLES:

Nick’s brother has autism and is nonverbal. During Nick’s wedding vows, his brother started making noise. The pastor pressed on while many wedding guests resisted the urge to stare. A caregiver whisked Nick’s brother out of the sanctuary as quickly as possible. The next day, Nick expressed regret about how the situation was handled. To the surprise of his family, Nick had wished his brother would have been kept in the service, even if it was disruptive for others.

Lauren’s older sister has Down syndrome and loves to dress up. On the day of Lauren’s wedding, her sister was over the moon with excitement. When it was her turn to walk down the aisle with her groomsman partner, Lauren’s sister made a cute scene that guests will never forget. Lauren wrestled privately with resentment. As had happened so many times before, Lauren felt her sister had stolen her own special moment. 

Liz’s brother has cerebral palsy. Liz’s mom told the children’s pastor that Liz will be her brother’s buddy so he can participate in Vacation Bible School. Liz is enthusiastically helpful with her brother but sometimes wishes she could interact like a sister instead of a caregiver during church family activities. Liz’s mother hopes her daughter will attend summer camp with her sister one day too. It gives her great comfort to know her daughter is so experienced with her sister’s needs.

Jamie’s sister came bounding into the youth group room ready for her favorite part of Friday nights—the worship. In between dancing and bouncing, she was giving hugs and would occasionally drool on other students. Jamie is embarrassed by her sister but wishes her friends were more accepting. It gets tiring for Jamie to have to explain her sister’s behavior with friends at school, when visiting her house and at church. Sometimes she wishes the youth leaders would speak up and encourage more understanding so Jamie wouldn’t always be the one having to give the education. 

Marta remembers enjoying youth group where she could have fun with her friends without thinking about the complexities of life at home. Nobody ever talked about her sister there and Marta was relieved she didn’t have to answer a lot of questions like she did at school. She liked that she wasn’t treated differently at youth group because she had a sister who was frequently hospitalized and needed constant attention at home. 

Danielle is the third generation in her family to attend Trinity Church. She enjoys the weekly women’s Bible study small group while her new baby is in the nursery. Lately, she’s been struggling with how to ask for prayer for her family because the situation with her adult brother is growing complicated. He acquired a brain injury after an accident during his toddler years. The fact that her parents are aging caregivers is weighing on her mind. She wants to request prayer but respects her parents’ desire for privacy. 

WATCH RELATED: Guests Erin and Lisa Jamieson at April 2018 Roundtable on Siblings

Did any of these sibling reactions surprise you?

In circumstances like these, how might parents, church leaders, friends, extended family, and others come alongside the special-needs siblings and communicate most effectively with them?

It’s worthwhile for us to explore some “best practices” for communicating with those who have a sibling with special needs.

  1. Be willing to initiate conversation and ask questions. Step into communication with intention. Your interest and willingness to engage in caring conversation matters.
  2. Make all topics and needs safe to express. Siblings of someone with special needs may feel their wants or needs have to take a back seat to the needs of others in their family. They may not feel empowered to advocate for themselves. Someone who has a sibling who is non-verbal may be accustomed to expecting more intuitive communication. As a result, they may not be inclined to voice their needs and hopes or be in touch with their feelings. They may take for granted that others will know what they want.
  3. Be careful about making assumptions. Get to know what really matters to a sibling. Different families and individuals will have their own unique preferences, even in similar situations. Furthermore, situations and preferences can change. You won’t necessarily be able to anticipate what they want without a deeper understanding of their situation and the family dynamics involved.
  4. Remain sensitive to the ebb and flow of stages and seasons. A sibling’s need for information and understanding may vary depending on their age, maturity and changing circumstances. For example, times of transition (e.g., a move up to youth group, a graduation, a move out of the home, a wedding, the death of a parent) are good times to ask questions and learn what may be helpful. No matter who is facing the transition in the family, it affects each family member differently and disability often adds layers of logistical, emotional and relational complexity.
  5. Commit to persevering prayer. Individuals in a family with special needs are often hesitant to ask for prayer. For example, many worry about sounding like a “broken record,” alienating people or wearying friends with the details of their challenges. Keep an open invitation for prayer requests. Those friends who ask for updates and follow through are highly valued.

Fostering great communication with the siblings of people with special needs can have far-reaching benefits for them, for their family, for you, and for your entire church.


RELATED: Special Needs Siblings Will Make Remarkable Future Leaders

This post is adapted from an article by Lisa Jamieson that first appeared in the Key Ministries blog April 15, 2018.


Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. She leads a weekly online discussion group welcoming caregivers in families living with disability. Lisa and her husband, Larry, are co-founders of Walk Right In Ministries, a non-profit organization building faith and community with special needs families. They live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome.

Good Grief!

Be happy with those who are happy, and weep with those who weep.
Live in harmony with each other.
Don’t be too proud to enjoy the company of ordinary people.
And don’t think you know it all!
Romans 12:15-16

Ouch! The first part of that passage may be familiar to you. It makes sense, doesn’t it? Being a compassionate and empathetic person means celebrating and mourning alongside others. Hopefully, that is a rather natural response for most of us. The “living in harmony” part is obviously more challenging, but still a worthy and reasonable goal. It’s that second half of the passage that stings for those of us who can feel like we are living extraordinary lives.

I have a confession to make. Since becoming the parent of a child with complex and extremely challenging needs, I have grown bitter when people cannot really understand certain things about “real” life because their lives are so “ordinary” compared to mine. That is a form of pride.

I admit to resenting people who fail to come alongside families like mine when they are trying to work through ranging emotions — grief included — that often come with a difficult diagnosis. This includes processing the ever-unfolding layers of realization that the diagnosis has turned their lives in a whirlwind of complex logistics and feelings.

For all the joy and richness my daughter, Carly, brings to my life, her daily (and nightly) needs wring me out emotionally. Sometimes there is a deep grief that feels too much to bear.

Each person in my family has experienced grief in their own ways and times too. We try to make room for each other to work through those feelings without feeling judged or edited. (Note to self: it is not helpful to tell others how you think they should feel.)

Our aim, as a family, has been to live according to this biblical principle:

We’re called to create safe spaces for processing individual and family grief.

RELATED: Siblings Needing Safe Spaces to Process Life

Here are some examples of situations that have triggered a cascade of emotions for me. When boiled down to the root of those feelings, I would say there is grief. You can probably relate your own list of grief triggers if you are the parent, spouse, sibling or grandparent of someone with disabilities or a chronic health condition.

  • On that Sunday morning, just one week after Mother’s Day in 1998, I sat on the edge of my bathtub sobbing. Our 5-day-old baby Carly had been screaming tears, literally since the moment she was born. When a serious diaper rash erupted that day, it was clearer than ever that she was in some miserable pain. We were all exhausted. I wanted to be at the worship service holding my newborn and celebrating with our church family. I felt robbed of that long-awaited joy. But, more than that, I felt an agony of grief and fear realizing that my child was in unrelenting pain and there seemed to be nothing I could do to fix it for her.
  • On October 10th of 2000, Carly’s neurologist phoned to share results of a genetic study that confirmed Carly had Angelman Syndrome. I felt everything from relief in finally knowing to confusion about all that was now unknown about her future, and ours. I felt overwhelmed and afraid. I groaned in the sorrow that a life-long, unexpected and extremely challenging journey was ahead, for all of us.
  • As our oldest daughter neared high school graduation, I spent the spring listening to other moms lamenting what would be next for them with an empty house. My sorrow and resentment swelled because I could not anticipate the same flexibility, spontaneity, and new adventures their lives would bring. I was angry with them for taking their freedom for granted.
  • At our godson’s wedding, Carly made disruptive noises and grew physically restless. Soon, I had to leave the sanctuary with her. I grieved missing his vows to his wife. I was disappointed I couldn’t hold my husband’s hand while we remembered our own vows. I sorrowed that we would need to hire help with Carly on future days when each of her sisters would get married.
  • It is frustrating to miss out on holiday game nights when family or friends gather because someone needs to keep Carly safe, entertained, or in her bedtime routine. I grieve then too.
  • I lament the interruptions and limitations that Carly’s needs bring to my time and energy for sex with my husband.
  • On the last day(s) of vacations, there is often a sense of weariness and resentment that simmers with thoughts of returning home to the daily slog of caregiving.
  • It hurts to miss out on having the kind of social life or traveling lifestyle I imagined having as a middle-aged adult or “empty nester.”

Triggers can become “holy moments.”

I am very thankful that, in time, God transforms many of my grief-triggering experiences into “holy moments.” That discovery process unfolds like this.

First, I have to lay bare what is raw in my heart to God in prayer. For me, that usually takes the form of prayer journaling with my Bible open to listen (read) for God’s voice in the conversation. It might involve curling up in a chair or lying face down on the floor listening to a worship song of surrender too. Then I try to respectfully but transparently share what I am thinking and feeling within the context of a safe relationship (e.g., mentor, counsellor, caregiver discussion group).

That kind of processing becomes an especially sweet gift when the result is deeper bonding with my spouse, one of my children, an extended family member or a friend.

Certainly, there can be catharsis in the simple act of talking things out. But there is so much more to healthy, biblical processing than that. Safe, respectful, and open conversations present opportunities to learn from others’ perspectives, feel less alone, resonate with each other, encourage each other, and sometimes even remind a loved one about where our ultimate hope and comfort come from.

For I am about to fall, and my pain is ever with me. Psalm 38:17

Be merciful to me, O LORD, for I am in distress; my eyes grow weak with sorrow, my soul and my body with grief. Psalm 31:9

The LORD is close to the brokenhearted and saves those who are crushed in spirit. Psalm 34:18

Blessed are those who mourn, for they will be comforted. Matthew 5:4

We don’t grieve without hope. Romans 8:18

Grief has masqueraders.

Grief is real. And it not necessarily bad. Nor should we rush ourselves through it. In fact, we should be careful and intentional about taking time to process it fully in healthy and godly ways. If we don’t, those intense emotions will come out sideways. And things are likely to get really messy, really fast.

Feelings of grief can masquerade in various responses. Unprocessed grief can look like explosive anger, obsessive and/or compulsive behaviors, excessive need for control, jealousy bitterness, resentment, withdrawal from relationships or hiding, depression, anxiety, hopelessness, guilt, fear, and a myriad of other responses that range from vulnerability and weakness to outright sin.

We are created with emotions that reflect the image of God — yes, our Almighty has emotions too. We need only look to the life of Jesus to see that.

Read how Max Lucado explores Jesus’ time of prayer and grief at Gethsemane:

“We’ve never seen Christ like this. Never heard such screams from his voice or seen such horror in his eyes. And never before has he told us:
‘My soul is crushed with grief to the point of death.’ (Mark 14:34)

How is such emotion explained? What is Jesus fearing?
Christ feared the cup of suffering.

Jesus: The God Who Knows My Name by Max Lucado

Jesus understands our grief.

Nonetheless, He ultimately submitted to the cross with holy love saying, “Father, if you are willing, please take this cup of suffering away from me. Yet I want your will to be done, not mine.” (Luke 22:42)

When we see Jesus at the cross, we recognize the sacrifice and atonement he made for our sins. But it is in the garden of Gethsemane that we see a depth of Jesus’ emotions. And we feel them with him.

Jesus understands our desperation.

Here’s some really good news…

GRIEF & JOY CAN BE EXPERIENCED SIMULTANEOUSLY

In everything we do, we show that we are true ministers of God. We patiently endure troubles and hardships and calamities of every kind. We have been beaten, been put in prison, faced angry mobs, worked to exhaustion, endured sleepless nights, and gone without food. We prove ourselves by our purity, our understanding, our patience, our kindness, by the Holy Spirit within us, and by our sincere love. We faithfully preach the truth. God’s power is working in us. We use the weapons of righteousness in the right hand for attack and the left hand for defense. We serve God whether people honor us or despise us, whether they slander us or praise us. We are honest, but they call us impostors. We are ignored, even though we are well known. We live close to death, but we are still alive. We have been beaten, but we have not been killed. Our hearts ache, but we always have joy. We are poor, but we give spiritual riches to others. We own nothing, and yet we have everything.
2 Corinthians 6:4-10


QUESTIONS FOR PERSONAL REFLECTION
  • King David expressed his emotions honestly with God. (Read Psalm 73 for a great example of authentic, God-honoring grief!)
    Can you describe your pain and when you feel it most deeply?
  • What grief triggers have you or a family member experienced recently?
  • What is helpful to you when you are feeling emotional?
  • Has God given you a “holy moment” in the midst of your sadness or fear recently?

Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. She leads a weekly online discussion group welcoming caregivers in families living with disability. Lisa and her husband, Larry, are co-founders of Walk Right In Ministries, a non-profit organization building faith and community with special needs families. They live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome.


I hope you’ll consider joining us some time for Real Talk Connect. Caregivers from many backgrounds meet every Tuesday at 2 pm Central on Zoom. We use one Bible principle as the theme for each week’s discussion. Today’s blog was based on one of those principles — We’re called to create safe spaces for processing individual and family grief.

Drop in for richly encouraging connection in a casual setting. Contact us for the Zoom link, the complete list of Bible principles as well as all the FAQs about Real Talk Connect!

Guest Post: Not Yet

The waiting room.

We have all been there. Most of life is waiting for the next thing, the next season, the next phase.

The waiting room is sterile, awkward, and a place of palpable fear.

For those of us who are suffering, waiting is incredibly painful.

We are waiting for a cure. Waiting for rescue. 

Copyright: nanobey

As we wait, we massage the heartache of disappointment from dashed dreams. We try to convince ourselves that it will be okay — that is, until another salt-tipped dagger stabs our resilience.

Some of us are okay with waiting. But MOST of us are asking why, when, and how?

Why didn’t God answer my prayers for my deliverance or my loved one’s healing from a diagnosis? 

When will this agony of daily grief be over?

How long, O Lord?

I struggle with chronic suffering. I live in circumstances that cannot be fixed by intellect, hard work, or service to the church. I am the mother of a disabled daughter. I am the grieving daughter who lost her mother to a slow death from metastatic cancer.

I have wrestled with the God I chose to follow at age 7. I accepted Jesus as my Lord and Savior with the vigor of child-like faith. But suffering has caused me to question this faith. 

My childhood faith was black and white.

My adult faith is grey.

My childhood faith was the easy proclamation of “Jesus loves me.”

My adult faith is accepting “Though He slay me, I will trust in Him.” 

My childhood faith was about receiving.

My adult faith is about letting go of the most tightly held parts of my heart.

As a child, I was focused on Jesus’ hands. He healed the blind with his touch and he stilled the storms with a wave of his hand. With such a miraculous God, trust and obey was the assumed cadence.

But as an adult, as trials have heaped more questions than answers, I am focused on Jesus’ heart. I want to understand his purpose when he suffered on the cross. Because now I feel nailed to my own cross. And I need someone else to carry it for me. Especially in the trial of unanswered prayer, I am fighting to trust and obey. 

The call to trust and obey does not change from childhood to adulthood. But as adults, we just have more doubts about whether God is trustworthy. We become suspicious that He may not know all of our needs. Does He really know us personally? Does He really have our best interests at heart? 

The world is certainly filled with enough evil that it may seem God is hands-off and uncaring. We may see his “NO” stamped on every gravestone and stack of medical bills. There are even passages in Scripture that can cause us to doubt God’s love. But when we view Scripture as a whole from Genesis to Revelation, we see our story in the context of a greater one.

When we read the Bible to understand the giver and not the gifts, our filter changes. 

We see God’s heartbreak when his creation rebels against Him. We see God’s loving-kindness in providing for complainers in the wilderness. We see God’s tenderness to those who even killed him. We see God’s justice when evil will no longer win. We see God’s mercy in how he pursues us in our rebellion.

Through this lens, we are more aware of our need for rescue, and we stand in awe of a trustworthy God. As our minds are transformed, our emotions are also sanctified by these truths. But during this transformation, we still need to learn how to reconcile unanswered prayer.

We are tempted to believe that God’s final answer is No.

But in reality, His answer is just not yet.

It is not yet time for physical healing. It is not yet time for deliverance from the salty dagger. God is asking us to hold onto hope for the finale. And while we wait, He calls us to hold onto Him. For His grace is sufficient. 

Finding comfort in the end of the story is what fuels us to go on to the next chapter.

When our timeline ends at death, suffering seems purposeless.

But when our timeline extends into eternity, suffering produces hope. 

For the Christian, being told “not yet” is an act of love. “Not yet” is the gentle but firm hand on our shoulder as we try to cross a busy street. “Not yet” is the hand that wipes our tears when we get a disappointing rejection. “Not yet” is the hope of rescue we have in chronic suffering. Like a mother who dandles her child on her knee. Like a father who disciplines the child he loves. As a parent, God cares more about our character than our comfort. It is God’s loving-kindness in “not yet” that draws us to repentance. He is an intentional Creator that calls us to our customized crosses. But He does not leave us hopeless. God promises to restore decay and death for His children in eternity. But how does this truth change our daily hope?

Our daily cross-carrying is the secret to palpating Calvary for it solidifies our hope in our Savior.

Our good Savior rescues us from our inadequacy and carries us — with our crosses and all. We learn to hope in the Lord, instead of hoping in rescue from our circumstance. We are comforted by the sovereignty of God even in the darkest experiences of our lives. One day in heaven, we will thank Him for telling us “not yet” for we shall see how “yes” would have caused us to love ourselves too much. We will thank him for sparing us from a shallow gospel. 

When we understand these truths, the waiting will be less suffocating. In fact, the waiting room can even be a place of rest.

We may not have all of the answers, but we know Who holds them. Let us gather in the waiting room, each with our own chronic ailments and circumstances that are impenetrable to medication and expert advice. Let us keep our eyes focused on Jesus. He is the author of our stories and the perfecter of our faith especially in trial. Let us wait with expectancy for this deliverance in eternity. Let us encourage one another when we receive the disappointing news of “not yet.” And when it is time for our names to be called, and our waiting is over, let us run to our trustworthy Savior. For our Heavenly Father will be standing at the door, welcoming his children home. And the reunion will be sweeter because of the wait.

It will happen. Just not yet.

“Yet what we suffer now is nothing compared to the glory he will reveal to us later. For all creation is waiting eagerly for that future day when God will reveal who his children really are. Against its will, all creation was subjected to God’s curse. But with eager hope, the creation looks forward to the day when it will join God’s children in glorious freedom from death and decay. For we know that all creation has been groaning as in the pains of childbirth right up to the present time. And we believers also groan, even though we have the Holy Spirit within us as a foretaste of future glory, for we long for our bodies to be released from sin and suffering. We too, wait with eager hope for the day when God will give us our full rights as his adopted children, including the new bodies he has promised us. We were given this hope when we were saved.” 

Romans 8:18-24

Rachelle Keng is a physician practicing Obstetrics & Gynecology in Charlottesville, Virginia, where she lives with her husband Michael and their two daughters. She cares deeply for people and has a passion for writing about her reflections on life and faith. Rachelle’s oldest daughter has Angelman Syndrome. Her experiences as a special needs mom are often the inspiration for her writing.

What God Accelerates While We Wait

We’re celebrating Carly’s 23rd birthday in 2 weeks. When you have a child with disabilities, birthdays trigger an odd mix of thoughts, emotions, and memories. I find myself experiencing awe and wonder about what God has done in her life and ours for more than two decades. At the same time, I still have moments and seasons of raw emotion — when fears, frustrations and sleep deprivation maintain an unwelcome grip.

Parenting Carly has been like living in a long series of waiting seasons. She wasn’t diagnosed with Angelman Syndrome until she was 2-and-a-half years old. Yet her challenges were increasingly obvious and numerous starting just a few hours after she was born. Those were long and confusing days before explanations came. Still, waiting seasons continued. I struggled for a while to feel bonded with her the way a mom connects with her child. I sometimes waited for friends or family to understand and empathize. I’ve waited for wisdom in decisions about things like medication, therapies, and even meaningful birthday gifts. I’ve waited for help. I’ve prayed for healing. I’ve waited for church to be easier for my family.

Lisa and Carly posing during rehearsal at Darby's Dancers

I’ve also waited for God to change me. Sometimes a new mindset is needed, or a better way of responding to my challenges. I’d really like to be shaken loose of unhealthy habits and selfishness. So many times, I have taken a deep breath and said simply, “I don’t know what to do, Lord, but my eyes are on you” (2 Chronicles 12:20).

I suspect most parents have sighed a similar prayer at least once.

RELATED: When Our Trust Meets Borders

The truth is Carly’s situation has accelerated my spiritual maturity and enriched my life in a host of ways. For example, disability slowed me down to appreciate things I may have missed. It completely shifted many of my values. It gave me a more realistic self-image. It exponentially grew my compassion and grace toward others. Living at the end of my rope has taught me how to rely on God and really trust Him. Even when I only have a mustard seed of faith to offer.

The apostles said to the Lord,
“Show us how to increase our faith.”

Luke 17:5

The Covid-19 pandemic has been an accelerating event too. For all that has been stolen and broken this year, there have also been some important wins. In many ways, we get to choose what long-term impact it will have on us. This has been part of conversations in disability ministry leadership circles lately too. Consider this example. The church that started 2020 with a 3-year plan for offering online services suddenly found a way to make it happen within 3 weeks. Countless families who had been isolated by disability for a long time could suddenly worship at home. And they received new empathy for their dilemmas.

Now we’ve all been stuck in a waiting season for more than a year. And while warmer weather and vaccines are bringing a sense of hope, many are still languishing in ambiguity about the future. There are some choices to make. This year has invited us to be changed. I hope you’ll allow it to be an accelerating event that moves you toward a life surrendered to God and in richer relationships with others. We’re all in process. We’re not perfected until heaven. But we can choose progress in the midst of everything that keeps us stuck. Because of Jesus, it is possible to be simultaneously both vulnerable and victorious.

I will celebrate Mother’s Day and then Carly’s birthday, caught between all the awe and what’s still raw. I hope you can join me in appreciating that living in this balance is the very thing that keeps us humbly in the sweet grip of our Savior.

And now, just as you accepted Christ Jesus as your Lord, you must continue to follow him. Let your roots grow down into him, and let your lives be built on him. Then your faith will grow strong in the truth you were taught, and you will overflow with thankfulness.

Colossians 2:6-7

Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Together, the Jamiesons founded Walk Right In Ministries in 2008, a non-profit organization building faith and community with special needs families.

The Secret to Thriving, Not Surviving

It was a quiet morning at the oceanfront hotel where we were staying at Virginia Beach. The breeze off of the Atlantic Ocean gently combed the beach grass. Families of birds chased the retreating waves, their footprints too light to make any impression in the sand. I walked alongside the beach, taking in the overcast grey sky blending into the waves. The beach approached a peninsula, promising a view that would surely not disappoint.

As the beach rounded the corner, another expanse of beach came into view with the same grey watercolor. I kept on walking. The horizon continued to taunt me as I walked closer to the end of this beach segment, followed by another bay of sand to trudge through. I kept my eye on the next corner. But each corner rounded to a similar scene. It seemed to be never-ending. It was beautiful, but it was also the same view no matter the number of steps I took. 

This walk felt like my life — a “Groundhog Day” of caring for my disabled daughter. There are beautiful moments. But most days are focused on each step without seeing the view. We are dealing with many of the same issues that we have dealt with for a long time. Only now, we are older. And my daughter is now bigger. It is becoming more physically challenging to keep up. Our patience has grown greater. Our wisdom has grown deeper. But our fatigue has grown more real as well. 

On my walk, I was looking for the beauty around the corner. I wanted the AHA! moment that would allow every grain of sand in my shoe to be worth the gritty journey. But each turn of the corner proved to be more of the same.

A vertebra "shell" found on Virginia Hampton Beach
A vertebra “shell” found on Virginia Hampton Beach

Chronic suffering is being trapped in a never-ending cycle of the same. We all have a painful thorn in our side that does not let up — an unanswered prayer, a salt-wound relationship that never heals, a broken heart that cannot ever be whole, a dream we must mourn. The reality is this broken world is marred by loss. 

I want to thrive in loss. Just survival is not enough for me.

I want a thri-vival

So how do we answer the deep aching feeling that there must be more? 

For the Christian, there is more. 

The only way to understand the intersection of a suffering mankind and a good God is to interpret this life through the lens of eternity. 

The only way to find purpose in our suffering is to know that our lives exist for more than this world. The more we accept decay — and, for that matter, learn to embrace it — the more we become thrivers rather than just survivors.

Decay is everywhere.

When I was walking this beach with the repetitive view, I finally looked down. Shells, seaweed, and abandoned nettings were peppered amongst the sand. All were carcasses of life that once was. The beach is a battlefield littered with the remains of an ocean ambushing its prey. What is one’s child’s playground is the cemetery of mollusks. What is one woman’s treasured pearl is the oyster’s expulsion of waste. What is one family’s treasured keepsake of vacation, is the skeleton of a conch.

Decay co-exists with beauty.

In fact, decay is required. For the beauty that emerges from decay is richer, more fruitful, and lasts forever. Like the compost that enriches the growth of a garden, decay, disability, and death are the fertilizers of a richer beauty to come. Yet decay occurs at the same time that flowers bloom. Beauty and pain can be enwrapped in the same moment.

There is no better example of this paradox of beauty and pain than the cross. The cross is the intersection of many contrasts — injustice and justice, death and life, hatred and love, grief and celebration. When Jesus died on the cross, He did more than punch a ticket to heaven. Purposeful suffering was exemplified. 

Still, living the joy of the cross on a daily basis is not easy. Especially in the mundane everyday struggles of motherhood or caring for the disabled, suffering can feel purposeless and never-ending. We can be deceived into hopelessness if we allow emotions to overshadow truth. The energy needed for everyday surviving makes thriving seem impossible. When the days of survival mode stretch into weeks, months, and years, we must learn how to thrive in the pit. So how do we seek thri-vival?

  1. To thrive means that we change our expectations about decay. Our decay is not unique to our generation and decay will continue until this world belongs to Jesus again. We can certainly point out the decay of others, but we are often unaware of our own decay. We expect progression, not regression. And yet our society, many of our relationships, and our own bodies are fighting the natural decay that comes from the fall of man. We would like to believe that we are always getting better, but in reality, we ourselves are not immune to entropy. As our bodies and minds age, our ability to process our worlds is also dampened. But one day, this decay, too, will lead to eternal beauty. And decay will not exist in heavenly realms.
  • To thrive means we recognize our need for rescue. Grace covers our sin, for our salvation. But sanctification requires us to embrace pit-dwelling. He gives our feet a place to stand between each rung on the daily climb. This state of dependence is uncomfortable and yet necessary for our trust in God’s goodness to grow. The Gospel is lived daily in our lives when we are in a state of dependence. For our need for a Savior is often when we are at the end of ourselves. 
  • To thrive means we learn to abide in Jesus daily. We rely on His mercies to be new every morning and enough for today’s trials. We humble ourselves to be a servant rather than the source. Abiding in Jesus is trusting Him to fill in the cracks daily. Abiding involves constant connection with our Source of strength. We are emptied continuously so that He can fill us continuously. And we must ask for help. Ask for His wisdom. Ask for eyes to see His care for us. Ask for a heart of praise. And these one-second prayers build our relationship with Jesus and help us see the treasures in each exhausting step. We must sit under the Bible as a servant and not stand over the Bible as a critic. As we learn of God’s plan for the decay of this world, our souls are comforted and reassured that He has an ultimate plan for redemption. 

That is thri-vival — where pain and beauty co-exist. It is possible to be a thriver and not only a survivor. To thrive is to abide with Jesus. Because when we look only at ourselves and our circumstances, the decay is discouraging. But when we look at the cross, decay is defeated. It is in the daily struggle of chronic Christian suffering that we learn to abide. We learn to trust in the One who carries us from birth to death to eternal life. God alone sustains us.

Our walk on the beach becomes about Him, not about us nor the view that we think we deserve. 

The walk to heaven is more pleasant when we let go of the “should be” and “should not be.”  We will stop walking for the purpose of the view. We will walk because we are called to walk. And then we will start to see the treasures in every step. We will expect decay in this world rather than be disappointed by it. And one day, at the vantage point of heaven, we will look down at all of the faded footprints in the sand and we will understand why. The deepest sinking sand will be the sweetest places we thrived as we learned to abide in Christ.

This is the hope of the Christian in chronic suffering: There is more. And for today, He is enough.

“Listen to me, house of Jacob, all the remnant of the house of Israel, who have been sustained from the womb, carried along since birth. I will be the same until your old age, and I will bear you up when you turn gray. I have made you, and I will carry you. I will bear and rescue you.”

Isaiah 46:3-4

Rachelle Keng is a physician practicing Obstetrics & Gynecology in Charlottesville, Virginia, where she lives with her husband Michael and their two daughters. She cares deeply for people and has a passion for writing about her reflections on life and faith. Rachelle’s oldest daughter has Angelman Syndrome. Her experiences as a special needs mom are often the inspiration for her writing.

Open Communication: The Currency of Love in Caregiving Families

My family has learned that we communicate a lot nonverbally. Carly, my sister who has Angelman Syndrome, is (for the most part) nonverbal. So we’ve learned to read the people and situations around us without needing to say much. The problem with that is that we often find ourselves frustrated and even resentful when the people around us are not “reading” what we are not saying.

Hear this loud and clear. It is okay to have needs and to express them. 

Did you hear me? It’s okay. It’s good. 

We were created to need each other. And that is a blessing! 

Then the Lord God said, “It is not good that the man should be alone.

Galatians 2:18

Caring for one another’s needs is a currency by which we exchange love! If you are a caregiver, you know this full well! We show the one we are caring for that we love them by taking care of their needs! But how do we take that currency of love to all the relationships around us and also let people love us?

As special needs families, we spend much of our lives putting aside our own needs for the more pressing needs of our family member. There is something very beautiful and even noble about the ability to do that for someone else. What an act of service and love!

However, if we completely neglect our own needs, we will slowly wear down our own ability to care well for the very one(s) we are trying to protect. 

We can tend to neglect what is going on inside of ourselves in favor of what we have to do to care for others. Then we allow moments of stress to give us permission to unleash all of the negative emotions we’ve got stored up in there. But if we can process our emotions as they come, not every stressful situation will feel like the sky is falling. 

I’m as guilty of this as anyone. But I’m learning. If you can catch your emotions early, take time to process them and evaluate what you need before the pent up emotions start creating negative behavior, anger and even resentment towards the people around you (i.e. your family), you’ll find you have much healthier and satisfying interactions them. In turn, you’ll enjoy much better relationships long term. To me, that’s well worth the effort of knowing myself and my emotions — giving them the time of day when they need it!

The best thing you can do for your sibling, parents, kids, family members and friends is to practice self-awareness and be proactive in communicating. There is enormous positive potential in sharing your own needs and asking others to share what they need. Especially in a season where most of us are experiencing more time in close quarters with those around us than ever, it’s important to learn tools for communicating well so everyone remains in good spirits!

There is enormous positive potential in sharing your own needs and asking others to share what they need.

We need practice being aware of our own needs and then learn good ways to communicate those needs.

“I’m so busy today, I’m never going to get everything done.” 

“You never wash the dishes!” 

“I wish the laundry would just wash itself!”

Believe it or not, these are not the best ways to ask for help. In fact, they’re not asking at all. Statements like this may feel like an obvious hint to those around us about what we need. But they don’t actually give effective information about how we would like to be helped! In fact, they can even communicate criticism or disappointment in others and their lack of ability to meet our needs. You’ve essentially told your loved one, even if inadvertently, that they have already lost the battle in trying to help you or love you.

Why would they try now?

We can allow moments of stress to give us permission to unleash all of the negative emotions we’ve got stored up in there. But if we can process our emotions as they come, not every stressful situation will feel like the sky is falling. 

How do we take the currency of love to all the relationships around us and also let people love us?

Let me clarify that it is totally okay to express frustrations and disappointments to your loved ones. However, it is important to check our own motives as we do so that we are not trying to send a subtle message behind our words. (We’re all guilty of it, I promise). 

  1. Ask yourself what you are feeling and why you are feeling that way.
  2. Ask yourself what would make it better or how others around you can help.
    (This sounds simple, but for most of us this is actually very difficult and might take a little soul searching, but trust me, it’s worth it.)
  3. Directly ask those around you for what you need! 

It sounds profoundly simple, I know. And it is. But once you start thinking about it, and if you’re anything like me, you’ll notice yourself trying to give subliminal messages to those around you without actually saying what you really want or need. 

I know, I know, it feels like cheating if you have to ask for it — even selfish! But the truth is, we are asking a lot of the people around us if we are expecting them to read our minds. We are caregivers! We know how to help the person we are caring for. Possibly the people we know least how to help are our other family members — and yes, ourselves

If you’ve ever been in school, you know the best kind of test is an open book test. When we expect our loved ones to know what we are asking for without us outright saying it, we are asking them to take a test on a textbook they’ve never read! The reality is, they don’t know what you need because your needs are as unique as you are.

Let’s do ourselves and our loved ones a favor this Holiday season (and all year round). Let’s give each other the gift of the answer key to us.

Let’s give each other the information we need to win in relationship with one another! 


Erin is a singer-songwriter and worship leader. Her songwriting, blogging, and speaking is often inspired by challenges and insights she experienced growing up in a family affected by disability. Erin serves with Walk Right In Ministries speaking on special sibling issues and assisting with social media. She has also served frequently in her community and home church as a worship leader.

Erin earned her Bachelor of Arts Degree in Songwriting at Belmont University in Nashville and currently lives in California where she completed three years of study at the Bethel School of Supernatural Ministry. Her latest CD Come Alive (released 2018) and is available on iTunes, Amazon, Spotify, YouTube and other streaming services.

Find out more at www.erinjamieson.com.

Christmas Music to a Special Needs Parent’s Ears

Philippians 2:4
Do not merely look out for your own personal interests, but also for the interests of others.

“How are you really doing?”

Oh, how I love to be asked that question, in that way!

On a regular basis, I hear words of longing expressed by parents caring for children with special needs. There is an aching to have their bittersweet situation acknowledged. They need to be overtly asked. And they need to know the person asking really does want to know the answer — that they’re not simply throwing out a casual greeting or just trying to be polite.

For me it’s like a warm hug to be asked for a personal update, and about my family’s wellbeing. To be honest, people didn’t ask very often before Covid-19. In the midst of these prolonged weeks and months of pandemic isolation (and lack of hugs), they ask even less. Yet Covid has intensified the need to be asked.

I’ll admit, I haven’t always made it easy for people to ask. Sometimes I overshare. Sometimes people assume the answer and skip the question. Sometimes my situation is complicated and intimidates or overwhelms people. They feel lost about how to help. What they don’t seem to understand is that I don’t expect anyone to fix or change our situation. What I need most is to feel heard, seen and cared about.

Does this surprise you? Does it seem strange to you that no one is asking? Have you felt the distance too? After all, we’re all Covid-weary. We’re all struggling to think outside of our own heads and needs these days, aren’t we? Maybe we think we already know the answer to the question. Picking up the phone, coordinating a video call or meandering into a room on the House Party app should be simple enough. Yet, most of us are on autopilot or in “survival mode” trying to make the most of days that look very different than we expected or hoped.

In years past, I had one friend who asked the question another way. We would go for a walk together once a month or so and she would say, “how is your heart?” I would chuckle at the predictability of it but felt grateful it reflected the heart of someone who really cared to slow down and listen to my answer.

I had a telehealth visit earlier this fall as I’ve been recovering from an Achilles injury. My doctor who appreciates my broader life situation started the visit asking about more than just my leg. Her “how are you doing?” was intended broadly and she responded warmly to my long sigh. She smiled knowingly and explained that another of her patients replied to that question earlier in the day saying, “we’re Covid fine.” We both laughed and nodded knowingly. We might all use the phrase “Covid fine” at this point. Life isn’t terrific, that’s for sure. But we seem to be getting by somehow. There are good days and hard days, holy moments and horrible moments.

As my own family limps along toward Christmas creating ways to adapt, enjoy and appreciate the meaning of life along the way, we are also experiencing waves of grief. The grief has little or nothing to do with Covid actually, or even the loss of a loved one. It is just the typical chronic experience of sorrow we feel around the holidays because of how disability impacts activities and fellowship for us at this time of year.

Triggers are everywhere and often come up unexpectedly. I used to grieve every time I pulled out the Christmas stockings because I couldn’t hang them where I wanted them on the fireplace mantel because they were a safety hazard to Carly. Thankfully, I’ve grown to love them hanging along the stairway railing in our front entryway. But there are plenty of other triggers of grief ranging from disappointment that a simple church service, family game night or puzzle time needs to be carefully orchestrated like some major production.

These days, “how are you doing?” feels like a rhetorical question. Still, it helps to talk about it. Most of us benefit from having our grief feelings articulated and acknowledged.

Grief needs space to breathe.

Entering into deeper conversations can be hard. There might be tears. Emotions tend to be messy when they ooze out sideways, so it’s better to give them room to breathe in a safe and regular way. (I wrote a couple of years ago about creating safe spaces to process life, especially with special siblings.)

My prayer in these early days of December is already for something very simple. I’m asking the Lord to sink deep into our souls this lesson about slowing down and paying attention to each other. There may be no greater gift to share this year.

May our relationships become richer by resisting assumptions, courageously and intentionally entering into conversations, and taking time to really listen to each other. I’ve been reminded that I need to be more direct with my loved ones about what I need and hope for this year (not expecting them to read my mind or between the lines of my words). I’m also asking the Lord to help me listen to the spirit of what others are saying and not be distracted by the tone of their voice or their choice of words. Many of us are under a lot of stress right now. Our messages aren’t always coming across the way we want them to or even the way we think they are.

For Christmas 2020, we’ll need more grace for others and for ourselves.

Let’s give each other the gift of heart-reaching conversations. That will be music to our ears this holiday season.

Colossians 3:12
So, as those who have been chosen of God, holy and beloved, put on a heart of compassion, kindness, humility, gentleness and patience.


Next week, Walk Right In Ministries has a musical Christmas treat for you. We’re going to do a Real Talk Livestream featuring Christmas music with Regie Hamm. He’ll read an excerpt from his Christmas story One Silent Night and share personal stories from life as a special needs dad. We hope you’ll feel pampered in the resonance and enjoy some literal music for your ears.

We’ll also take questions LIVE in the Facebook comments as well as ahead of time and privately via email to info@walkrightin.org or Instant Messenger.

Find us here on Thursday, December 10th at Noon (CDT).

Regie Hamm is an author, blogger, hit songwriter, artist, and producer who has penned over twenty #1 hits, earned multiple Grammy and Dove nominations, and won SESAC’s Songwriter of the Year award four times. His solo-written song “Time Of My Life” (sung by 2008 American Idol winner David Cook) stayed at #1 for four months on the pop charts. The amazing story is chronicled in his book, Angels & Idols.

Regie has written for Clay Aiken, Backstreet Boys, Rascal Flatts, Jaci Velasquez, Rebecca St. James, Mercy Me, Clay Cross, Gaither Vocal Band, Point of Grace, Mark Schultz, Bob Carlisle, Dallas Holm, Joy Williams, Avalon and more!

Regie and Yolanda’s have two adopted children. Their daughter Bella was born in China and adopted in 2003, then later diagnosed with Angelman Syndrome.

Join us on the 10th — this will be fun!

22 Years of Trail Mix

I’m not a trail mix fan. Never have been. I still only tolerate raisins and just started showing enthusiasm for dried fruit a couple of years ago. I prefer my snacks separated into their own bowls. But the last 22 years are a trail mix of emotions and memories for me. And for all the ways and times my mind, body and spirit have been thrown into chaos since Carly was born on this day in 1998, I’m profoundly grateful for the rich texture and depth of flavor she brings to our collective lives.

Carly was diagnosed with Angelman Syndrome at two-and-a-half years old.

Carly is a woman who will test the limits of your wits and then move in to give the most generous and satisfying hug you’ve ever received. Her smile lights up a room. Her grin assures you there is much on her mind. Her laughter is infectious. Her high-decibel scream warrants ear protection. When she’s hurting, she’s a puzzle to help. When she’s aggravated, she’s strong as a horse. When she has energy to burn, she’ll use every inch of her small frame to knock you down and wrestle on the rug. When there’s food around, her arms seem many and long. Forever curious, even nosey at times, she’s been affectionately called a “seizer of opportunity!” She’s a sneaky rascal and fiercely stubborn. That curiosity and energy serve her well. A dance party with Carly finishes out any day perfectly. She pours music and praise from her soul. I have huge respect for her perseverance. She’s exploded my own faith and expectations on a number of occasions. For all the times we have to ask her to “just wait” while using a full body block to keep her from tearing into something or knocking something down, I don’t know anyone who would be so patient as she is.

We’re celebrating Carly’s 22nd birthday today. Larry and I were married at 22 so this number throws another few layers of nostalgia and emotion to all the feels. We had an epic dance party that night. We’re going to have another one tonight with all three of our incredible daughters and a bunch of other loved ones. They will join us virtually on something called Zoom. Yes, it’s an epic year, isn’t it?

When I shake the bowl of my feelings today, the ones that quickly rise to the surface are pride, gratitude, hope and joy.

Happy birthday, Carly! We’ll try to give you gifts you love. But, truly, YOU ARE THE GIFT.

1 Thessalonians 3:9
How we thank God for you!
Because of you we have great joy as we enter God’s presence. 



NOTE: Carly’s oldest sister is the one helping Carly make trail mix in the featured photo. Rest assured, that is a sweet moment I was happy to watch them have together. But I had no interest at all in eating the snack with them. Even without the raisins, I’m not interested, thanks. 🙂