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. 🙂

Special Siblings Needs Safe Places to Process Life

I’ve been thinking a lot lately about how important open communication is for growing children, especially those who grow up as siblings of someone with disabilities, chronic health conditions or other special needs. The stress, chronic grief and complex logistics of their lives warrant heightened intentionality about keeping lines of communication wide open. Our kids need more than adequate opportunity to process their complicated lives with all the associated emotions, pressures, challenges and even the intense joys.

My husband, Larry, and I tried to provide this kind of safe zone for our kids when they were growing up at home. We also encouraged their relationships with mentors at church and with our adult friends. We deeply appreciated that grandparents, aunts and uncles served in this way too. And we sought out counselling for them when it seemed appropriate (at school and with Christian professionals). As they have come into adulthood, our children are now passionate about helping other special-needs siblings to communicate and connect in relationships that keep them thriving too.

“Our kids need more than adequate opportunity to process their complicated lives with all the associated emotions, pressures, challenges and even the intense joys.”

No matter how old our children are—very young, teenaged or adult—I think parents owe it to their children to be among their safest places to land. Don’t we all want our kids to be emotionally and spiritually healthy and confident? I expect they’ll be most socially satisfied when they can be transparent in relationships. And they’ll be most emotionally grounded when those relationships are based on biblical values. So, when they need to ask questions or just process their thoughts and feelings, I want to be the kind of parent who is available, compassionate and wise. I want to listen with genuine curiosity and very little judgement. Especially when our kids were young, I also wanted to recognize when it was necessary to initiate certain conversations knowing that my children wouldn’t always recognize when they needed to talk something out. As one of our daughters was growing up, Larry was particularly good (much better than me) at drawing out her deeper or unrecognized (but necessary) feelings.

To this day, Larry and I tend to be conversation starters who seek to know what’s going on in our children’s hearts and minds. I want to be a better listener though. I tend to ask questions well but interject my own perspectives too often. Time and time again, I keep learning from what my children have to say.

Over the years, I have had countless conversations with my children about what it is like for them growing up in a family with special needs. Sometimes these conversations were welcomed and sometimes they were met with an eyeroll. “There goes mom again,” they seemed to say. “I don’t feel like talking about this subject right now,” was the message I got loud and clear. I had to get creative and as casual as possible about how I slipped questions into our conversations in the car or around the dinner table, for example. Yes, these are often hard conversations that nobody really wants to have. And so, we tend to avoid or under value the benefits. Still, I try to respect their space and give them a pass when I sense the eyeroll while conveying a simple reminder that my door is always open if they want to talk. Really, don’t all kids need that, even if they aren’t part of a special needs family? They need our accessibility and our respect. Now that my own children are adults, they admit that it was good for me to urge their openness now and then.

“No matter how old our children are
—very young, teenaged or adult—
I think parents owe it to their children to be among their safest places to land.”

Here’s another thing I noticed as our children were growing up. They ebbed and flowed through different stages of need for information and understanding about our situation as a family with special needs. Just like when they were learning about sex, I responded to their questions with increasing details as they grew in maturity. Similarly, I watched their questions, feelings and perspectives about being part of a special needs family change through different seasons of life. Now that they are meeting more and more peers who are also special-needs siblings, they are discovering how valuable it has been for them to have safe places to ask questions, express frustrations and disappointments, share ideas and have their perspectives valued. They see that not all special-needs siblings have adequate opportunities for that kind of processing.

A couple of years ago when my daughters and I started speaking around the country about parenting special siblings, I created a list of “Conversation Starters for Parents.” And along with that, there was a “Guide for Parents’ Reflection.” Click here to download these resources.

It can be a challenge knowing how to check in with our kids often enough but not so frequently that we irritate them. I have to remind myself sometimes that I’m asking primarily for their benefit, not my own. I also have to be careful about how frequently or intensely I share about my own grief with them. To some extent, I need to model healthy grief processing and stress management. I want them to see that I understand and resonate with them. But I know they need to understand my experience without mine superseding theirs.

“MY KIDS NEED TO UNDERSTAND MY EXPERIENCE WITHOUT MINE SUPERSEDING THEIRS.”

I’m thankful that none of us is ever too old to begin processing questions, feelings and perspectives along with our children. I’m coming to see this as one of the most precious rewards of having adult children. By raising them in an atmosphere of safe communication, we now enjoy treasured friendships with each of them.


To read more about great communication with special-needs siblings, check out this article from Church4EveryChild.com.

Click here for my full series of articles about ministering to people who are siblings of someone with special needs.

There are some common questions siblings may be asking themselves or others through the different life seasons. 
Click here to download the “Sibling Season Questions” file.



This post by Lisa Jamieson first appeared June 2018 at LisaJamieson.org.

One Father’s Desperation Holds Urgent Lesson for Us All

These comments from July 25, 2015 warrant reposting today.

The Angelman Syndrome community worldwide has been reeling this week — experiencing a horrifying, heartbreaking loss. Never before has my passion been greater that caregivers need support, encouragement, a place for resonance, an adequate rhythm of respite and the kind of hope and strength that only Jesus Christ can give. 

Take a moment to read/watch the full news story (July 23, 2015). Click here: Facing changes to the respite care situation for his 16 year old son, a father took his son to an area park and killed him” and then killed himself.

I’ll never be able to thank enough the many people that have poured into our family so that we can thrive amidst the 24/7 weight of “extreme caregiving.” Some seasons have been better than others but there’s no denying that the way people have come alongside to support us is remarkable. (It should not be remarkable. It should be commonplace for all of us to have enough compassion and margin in our lives to reach out to others who are so stretched.) 

While I can’t fathom taking the kind of action this dad took, Larry and I (as well as our oldest children Alex and Erin) all know too well the kind of desperation that can be felt behind closed doors when things like difficult behaviors, seizures, diaper catastrophes, cyclic reflux vomiting or sleep deprivation have taken us to our wits end. My heart aches and a sense of nausea wells in me when I consider so many friends who struggle daily with deep depression and/or sense of overwhelming loneliness/isolation caring for a loved one. 

Our culture doesn’t value caregivers enough, doesn’t pay respite staff enough (it’s extraordinarily difficult even to find people willing to work this type of job at ANY rate of pay), doesn’t encourage enough. Yet there are shining examples of progress. For example, the heart behind Caroline’s Cart and practical value it is bringing to families is like a hug from God. 

We must pray for the reality of this need for community and outreach to sink in and fast. May all of us to value more highly our opportunities to encourage one another, lead lifestyles that prioritize time to support a weary friend and have courage to ask for help when we’re struggling. May we create churches that go beyond just being welcoming places to becoming places that truly ENGAGE with these families, do more than just “be nice” and actually figure out how to carry another’s burden. 

Lord, help us all. 


Gear Up for Good Gifts

Thanksgiving, Christmas and a New Year are right around the corner. Days will be busy for most and lonely for some. Wherever we are on that spectrum, there is opportunity. I want to paint a picture of how we can give and receive life-lifting gifts this holiday season.

And let our people learn to devote themselves to good works, 
so as to help cases of urgent need, and not be unfruitful.” Titus 3:14

Do you remember how it felt when you were the kid who got picked last because you ran a little slower than the rest, weren’t quick enough with your times tables or just weren’t wearing the right color shirt that day?  How about that time when a sprained ankle kept you on the bench? Your mom made you go to the game saying, “you’re still part of the team and need to show your support even if you can’t play!” Some part of you wanted to be there with your friends but another part would just rather have stayed home alone than be trapped on the sidelines unable to fully participate. 
The holiday season stirs very similar tensions for folks who are wrestling with something that is challenging or seems to differentiate them from the crowd.  Imagine these holiday scenarios:
You are the parent of a child with autism who has been invited to attend the family Thanksgiving. The atmosphere will create stress for your child — and so for you too. You anticipate being exhausted trying to manage your child’s disruptive behaviors. You will spend a lot of time on the periphery of the group watching other parents enjoying the freedom to relax in conversations and play traditional holiday games. You’ll probably spend the afternoon trying to help your child avoid a myriad of scene-causing possibilities from sensory overload to a toileting catastrophe or seizure.  Knowing you’ll get depressed and feel guilty for resenting others who will sip a drink and casually balance a full dinner plate in their lap, you consider staying home.
You have been having some difficulty remembering names and staying focused in conversations. It is frightening to go out in public. You aren’t comfortable speaking in case someone hears that you are struggling. You regret that you’ll miss seeing the grandchildren play but your mounting fears remind you that staying home feels safer.
You’d like to be with family for the upcoming holiday dinner but you don’t want to drag everyone down. You wish you could sit quietly on the couch just soaking up some of the joy around the room but you’ll feel pressure to participate and look happy. You suspect the family has wearied of your moods and just wants you to snap out of it. You feel misunderstood, unwanted and unsafe.
Going to church for the special holiday services has always been a joy for you but now it feels overwhelming. Seeing happy families reminds you of that loved one who won’t be with you this year. Unexpected moments of raw grief quickly spiral out of control. The last thing you want to do is draw attention, feel out of control or cast a shadow on someone else’s joy.
When Carly was first diagnosed with Angelman Syndrome, I suddenly found myself experiencing a paradox — surrounded by people who loved me yet feeling very alone. Some part of me knew these were not rational feelings. Yet I still encounter too many triggers for feelings of disappointment and isolation, especially during the holidays.  
Nobody likes to feel different, undervalued, isolated, last or lonely. Yet there is heartache and longing to feel included all around us. Whether you’re the one feeling sidelined during these holidays or someone who is enthusiastically gearing up for the celebrations, I hope you’ll pray for radar to recognize the Divine promises and opportunities.
4 Promises that Anchor and Encourage People
1.      Nobody is immune to trouble but we have hope.
Jesus said “I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.” John 16:33 (NLT)
We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love. Romans 5:3-5 (NLT)
2.      God remains your most faithful advocate.
The Israelites continued to groan under their burden of slavery. They cried out for help, and their cry rose up to God. God heard their groaning, and he remembered his covenant promise to Abraham, Isaac, and Jacob. He looked down on the people of Israel and knew it was time to act. Yes, I am aware of their suffering. So I have come down to rescue them.”  Exodus 2:23-25, 3:7-8 (NLT)
So Jesus told them this story: 4 “If a man has a hundred sheep and one of them gets lost, what will he do? Won’t he leave the ninety-nine others in the wilderness and go to search for the one that is lost until he finds it? 5 And when he has found it, he will joyfully carry it home on his shoulders. 6 When he arrives, he will call together his friends and neighbors, saying, ‘Rejoice with me because I have found my lost sheep.’ 7 In the same way, there is more joy in heaven over one lost sinner who repents and returns to God than over ninety-nine others who are righteous and haven’t strayed away! Luke 15:3-7 (NLT)

And the Holy Spirit helps us in our weakness. For example, we don’t know what God wants us to pray for. But the Holy Spirit prays for us with groanings that cannot be expressed in words. And the Father who knows all hearts knows what the Spirit is saying, for the spirit pleads for us believers in harmony with God’s own will.  Romans 8:26-27 (NLT)

3.      You are never alone.
So humble yourselves under the mighty power of God, and at the right time he will lift you up in honor. Give all your worries and cares to God, for he cares about you. Stay alert! Watch out for your great enemy, the devil. He prowls around like a roaring lion, looking for someone to devour. Stand firm against him, and be strong in your faith. Remember that your family of believers all over the world is going through the same kind of suffering you are. In his kindness God called you to share in his eternal glory by means of Christ Jesus. So after you have suffered a little while, he will restore, support, and strengthen you, and he will place you on a firm foundation. 1 Peter 5:6-10 (NLT)
Do not be afraid or discouraged, for the Lord will personally go ahead of you. He will be with you; he will neither fail you nor abandon you.” Deuteronomy 31:8 (NLT)
4.      When you suffer, God’s comfort will be multiplied to you and through you.
All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us. For the more we suffer for Christ, the more God will shower us with his comfort through Christ. 2 Corinthians 1:3-5 (NLT)
5 Ways to Ease Someone’s Heartache During the Holidays
  1. Notice someone who may be hurting — Reassure someone who feels isolated that they are not invisible. Let a simple word or act of kindness speak clearly that people matter to you and to God. “Tithe” a few moments of each day to send a kind email or hand-written note, make a phone call, do an act of service or give a grocery/gas card. While you’re out in the community, be intentional and generous with your eye contact and a smile.
  2. Just BE — Come over and hang out next to someone (whether it’s across the room or across town). You don’t have to know what to say. Resist pulling back from relationships that feel awkward or too complicated. Your presence ministers so much more than you know.
  3. Listen first, then listen some more — Ask what somebody is thinking, feeling or wanting. Take time to understand what the person is experiencing and, without analyzing or judging them, learn how they are coping with life’s challenges.
  4. Remind someone of God’s sure promise — Share one of the examples above or describe one of God’s promises that has been tangible for you recently.
  5. Express appreciation and affirmation — Thank people for sharing their heart with you, for helping you learn something, or for coming to the party even though it was hard. Let someone know that their patient endurance through hardship inspires you. Tell a caregiver that they are doing a good, important and beautiful work.
Have you believed the lie that you are too busy to be used by God in sharing someone’s burden this holiday season? Or are you someone who is feeling too stuck or too broken to experience God’s touch? 
Here’s the truth:
God will generously provide all you need.
Then you will always have everything you need and plenty left over to share with others. 
2 Corinthians 9:8 (NLT)
Let’s remember together that we live and move and have our being by the grace and power of God, not ourselves (lest we might boast about it). 
What wonderful inspiration and opportunity to carry us through these holidays and into a new year!


Nancy’s Glory Story from Mount Hood

Mark and Nancy have experienced some extreme life adventures. For example, Mark is a talented water skier and snow adventurer. Nancy is passionate about horses and riding. Their son, Brandon shared his parents love for outdoor sports, animals and the mountains. Tragically, Brandon struggled with depression and took his own life in 2010 at the age of 28. Despite their deep sorrow, Brandon’s parents are carrying on their son’s legacy by finding ways to celebrate things Brandon celebrated and sharing his love for people by serving others with the love of Jesus. Mark and Nancy recently visited Mount Hood to scatter Brandon’s ashes. While there, they had a beautifully unexpected encounter with the Living God. We’re humbled that they are willing to bravely, vulnerably and joyfully share about it here so that others might be encouraged in the truth that God is near, powerful and good.


Our group gathered at the entrance of Timberline Lodge just before noon to commence up Mount Hood. Brandon’s friend, Adam, and three of Mark’s cousins joined us. Prior to our arrival, Mark’s cousin Nels had kindly taken on the responsibility of arranging logistics for our mission to scatter Brandon’s ashes on top of Mount Hood. He accomplished this by going straight to the top and discussing our intentions with the president of the ski resort (whom Nels happens to know). As it turned out, an experienced mountain transport person, Logan, was assigned to get our group (along with our precious cargo) “as far up the mountain as was reasonable” (per the resort president).  


When our group gathered in front of the lodge, Logan showed up promptly in an older Suburban and loaded the six of us into the truck. We started our ascent up the rocky, barren, dusty and steep path.  This was like driving around your block to Logan who was nonchalantly chatting with us as he careened around large boulders and near steep cliffs.  The rest of us were not so relaxed and hanging on for the adventure, which felt like you were in a Jeep commercial!  At 7,000 feet, Logan had taken us as far as we could go on four wheels because the next leg of the climb was almost vertical and involved icy snow patches. 


At this point, our group was escorted into the resort’s largest snow Cat (used on ski slopes to groom the trails). We were all in for the extreme ride of our lives. Again, Logan skillfully got us to our destination. We were on the top of Palmer Run, 8,500 feet up Mount Hood. We almost could have touched the clouds, if there had been any. But it was sunny, blue and about 55 warm degrees up there!  We felt God’s hand upon the weather, the gentle caressing breeze and our journey to stand atop this mountain. 


During our ceremony on a ledge of Palmer Run, Mark read a devotional. Then I prayed, thanking God for giving us Brandon for 28 years. We asked God for His help to continue releasing Brandon back to Him, “ashes to ashes,  dust to dust” as the mountain breeze took the ashes. There was a heartfelt group embrace and then we all noticed a raven as we dispersed from that ledge. The bird had suddenly flown to where we had been standing and it walked around for a few moments in the snow of Palmer Run and then flew to perch on the nearest chairlift. When we returned to the Cat where Logan had been respectfully waiting, he mentioned the raven and how they are so rarely seen on the upper part of the mountain. God’s presence seemed to have been revealed again as that raven appeared on our sacred ground.  
There was a final extreme ride going vertically down the mountain. Logan dropped us off back at the entrance for Timberline Lodge. Our group adventure seemed to be coming abruptly to a close and we said our goodbyes. Mark & I were to be staying the night at the lodge as previously reserved by Nels. But before he drove off with his kids, Nels informed us that our room was ready and we would not be paying for the stay or the transport everyone took to the top of the mountain. We were a little dumbfounded and stammered, “Now that’s awfully nice, but we expect to pay.” Nels replied, “Timberline will not take any payment. The President insisted that there would be no charge because Brandon was a part of the Timberline Family.”
Mark & I waved goodbye as we stood in shock. We were filled with gratitude and tears slowly streamed. God saw to it that our hearts were mended a little more that day from having to say goodbye to Brandon that February day a few years ago.

We are so thankful for our friends and prayer warriors who have helped us through this adventure — both the trip to Mount Hood and our continued adventure called Life.

Note: The subject of suicide is complicated. Four Brief Theses on Suicide offers a helpful reflection on the subject. 

Other resources you may find helpful:

  • If you are in a suicide crisis, call SAVE’s (Suicide Awareness Voice of Education) national suicide prevention lifeline at 1-800-273-8255.
  • Focus on the Family Help Center counselors are available Monday through Friday between 6:00 am and 8:00 pm (Mountain Time) to provide guidance and resources. You can arrange to speak with a licensed Christian counselor at no cost by calling 1-855-771-HELP (4357).  



Jamieson’s “Toughest Struggles” Interview Re-Airs


A couple of years ago, Larry and I were invited to do an interview with WORDS TO LIVE BY RADIO. We shared about how we experienced God in the early years of Carly’s life when disability was devastatingly new and we struggled to ask for help so Carly might thrive. That episode is re-airing again this coming weekend, Saturday and Sunday, September 13 & 14

I hope it’s encouraging to you. Please join us in praying that God will use this once again to reach into things like broken heartedness, hopelessness and loneliness. 

To learn where you can hear the interview on a station in your area, call 616-974-2210 with your zip code handy or just visit this link — http://words.net/2010/06/04/finding-hope-in-one-of-life’s-toughest-struggles-–-larry-lisa’s-story/

For more of the story about those early years, read Finding Glory in the Thorns — the book about how Carly, her family and the community surrounding them experienced love, hope and unexpected miracles in the midst of shared struggles.  Finding Glory in the Thorns and the small group curriculum Finding Glory Group Discussion Guide are both available at the Walk Right In Ministries store and Amazon. Finding Glory in the Thorns is also available for your eReader on Kindle, Nook and iBook (Apple).