Carly Jamieson took her first steps when she was 3 1/2 years old. That came after years of stress and tears because her sensory issues were so severe that she couldn’t even tolerate being held in her parent’s arms for feedings until she was 9 months old.
At 2 1/2 years old, Carly started having seizures and was diagnosed with Angelman Syndrome, a rare genetic disorder involving a deleted portion of her 15th maternal chromosome. Despite the fact that Carly faced a grim prognosis and had been experiencing significant developmental delays, a sleep disorder, feeding problems, and seizures, a miracle story of community and a child’s potential was unfolding.
For over three years, sixty volunteers surrounded Carly’s family with help and prayer. That support set a foundation for amazing progress that continues bearing fruit in many ways yet today.
The heartwarming story of God’s love through that community during those early years of Carly’s life is told in the book Finding Glory in the Thorns.
Click HERE to find the complete Finding Glory collection of books at Amazon.
Today, Carly’s tolerance for touching things shows itself in the contagious affection, frequent hugs and exuberant smiles that are much more typical of someone withBut Angelman Syndrome. She’s a little “rascal” with a great sense of humor. She loves music, dance parties, sitting beside her sisters at the piano, jumping, swimming, and helper her caregivers make pumpkin waffles. The quality of her gait is remarkable considering her prognosis and she sporadically uses a small handful of word approximations. She has twice walked over a mile in the Angelman Syndrome Foundation annual fundraiser walk with her mom, dad, two sisters, and many friends.
That baby who would not be held now snuggles with precious bear hugs and even sometimes says, “I love you.”
Angelman Syndrome (AS) is the result of an abnormality of the 15th maternal chromosome. Individuals with AS have global developmental delay and cognitive disabilities. They rarely develop any speech but everyone benefits from learning to listen in new ways to what they have to say.
People with Angelman Syndrome usually have unique behaviors and generally happy personalities. Most individuals with AS will experience seizures. Many also experience sleep and feeding challenges. The majority learn to walk but usually have balance and movement disorders. A normal lifespan can be expected.
Angelman Syndrome is very frequently mis-diagnosed as autism or cerebral palsy.
With strong supports, people with AS can thrive surrounded by friends and loved ones engaging in meaningful activities and sharing their unique perspectives.
ln a medical breakthrough, Dr. Edwin Weeber cured Angelman Syndrome in a laboratory mouse. Because AS affects one single gene it is much easier to understand than other neurological disorders like autism and Alzheimers’ disease. Funding for research has more potential than ever as researchers grow closer to making a treatment available for humans.
How many delightfully different kids from around the world does it take to turn on a light of excitement about talking to God? Well, the author and photographer of the new book Jesus, Let’s Talk discovered that about 30 could do it beautifully!
Walk Right in Ministries is very excited to partner with the creative team of Lisa Jamieson (author) and Ann L. Hinrichs (photographer) in introducing the new children’s picture book about prayer called Jesus, Let’s Talk. It released on Amazon this Tuesday to raving reviews and plenty of smiles, especially from the young people who had the opportunity to model for the project.
One young man featured in the book opened his early-release copy recently and eagerly flipped through the pages. But he quickly overlooked any photo of himself because he was more excited about finding his friends pictured there.
Jesus, Let’s Talk is helping children, early readers, and people with developmental differences enjoy the sweet basics of conversation with Jesus. There are many ways to worship and this natural approach to prayer inspires both the young and young at heart.
Colorful photographs of children and young people celebrate that the fingerprints of God are on all people, all around the world. The book also highlights key prayer words using American Sign Language. Young ones who are not yet talking, those who experience hearing impairment, and others who simply want to explore the joy of communicating non-verbally will have fun learning new ways to express themselves.
Featured prayers include:
Thank you, God I’m sorry, Jesus Help me, Holy Spirit I’m listening to you I believe in you I love you, Lord
We hope you’ll join us in sharing this wonderful new resource with others. Introduce a child to a personal relationship with their Creator, Savior and Friend, Jesus. Jesus, Let’s Talk makes a perfect gift for toddlers, early readers, and for young people with developmental-intellectual disabilities.
Also, would you please go to Amazon and write a review? Sharing your confidence and encouragement is invaluable in helping us get this book into more homes where families can experience the love of Jesus and grow in relationship with Him.
Lisa Jamieson (author) parents a grown daughter with special needs and is a national disability ministry leader who is also a speaker and author of Finding Glory in the Thorns and related Bible study materials. Jesus, Let’s Talk is her first children’s book. Connect with Lisa at lisajamieson.org .
Ann L. Hinrichs (photographer) serves missionaries worldwide while enjoying the arts as a musician, worship leader, voice teacher, and international photographer. Find out more at annhinrichsblog.com .
A common concern among caregivers, especially parents of children who have disabilities, is what will happen to our children if they outlive us. And as middle age comes, depending on the degree of toll in caregiving and other life circumstances, we caregivers tend to fear that our bodies may wear our long before we actually die. What then? And so we pray a lot. As we’re able, we do some planning. Having an estate plan in place offers some peace of mind as does doing lots of documentation for those who will be inheriting the caregiving responsibilities. Our family has had many conversations about this and those are always very reassuring as well. But at the day’s end, when my body is aching and I’m weary to the bone (as they say), I’m left with taking it all to the Lord in prayer and begging him to preserve and protect my husband and I for as long has He possibly will! Today I was reading the accounts of a missionary who travelled a ship between England and China in the 1930s. The ship’s route took them through the Red Sea with full views of the desert places where the Exodus occurred. Audrey Johnson’s pondering jumped off the page at me with reassurance that God’s capacity to preserve and protect His children is not limited by our physical bodies and minds. Audrey wrote:
Probably no one who reads Exodus can fully enter into that miracle of absolute dependence upon our faithful God who revealed Himself so clearly that throughout Israelite history and Psalms this miraculous preservation and protection was never forgotten. Think for instance of Deuteronomy 29:5 (which says):
“For forty years God has led you through the wilderness, yet your clothes haven’t become old, and your shoes haven’t worn out” (TLB).
Audrey Wetherell Johnson
I want to remember this verse and the underlying promise it carries for our family too. Nothing has changed about God, His promises or His abilities. Jesus Christ is the same yesterday as He is today and forever. His character, power, goodness and accessibility remains as certain for me as it was for Moses. In fact, it’s even better because I (we) have access to God through the indwelling Holy Spirit! The very same God who so faithfully cared for the people of Israel makes the same kind of promise to me. His protection may look differently than I’m expecting but it remains dependable and will surprise me in the best of ways. Whether you are a fellow sojourner down the caregiving road with me or someone who just needs reassurance, let us be confident of this — God is creatively preparing all kinds of “miraculous preservation” for us and for those we love. Jeremiah 29:10-13 This is what the Lord says: “You will be in Babylon for seventy years. But then I will come and do for you all the good things I have promised, and I will bring you home again.For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.In those days when you pray, I will listen.If you look for me wholeheartedly, you will find me.I will be found by you,” says the Lord.” This post was inspired by the book Created for Commitment by A. Wetherell Johnson, founder of Bible Study Fellowship.
A few months ago, I posted this statement on Facebook:
This got a reaction.
Most people who responded were caregivers themselves. They resonated deeply with the sentiments I expressed. The rest of those who responded were encouraging friends whose comments usually indicated that they were praying for me.
I was grateful for the prayers but even more moved by the hunger among caregivers to feel noticed and heard. Since so many caregivers practically begged me to get this word about their (our) chronic stress out more broadly (on their behalf), I posted again the next day with a very personal and rather lengthy explanation about my own chronic stress and why I talk about it the way I do.
I wasn’t expecting to post it, yet again, on my blog. But subsequent conversations suggest it deserves one more share. So here goes…
WHY DO I SHARE WHAT I SHARE? AND WHEN I DON’T SHARE, WHY NOT?
There are a variety of reactions I encounter whenever I talk about how chronic stress is affecting my family and others in intense or complicated, often long-term circumstances.
Obviously, not every reaction is helpful to a family like ours. But trust me, I understand most people are well-meaning and I’m very hesitant to criticize any reaction — I mostly appreciate ANY reaction (except apathy). Larry and I don’t expect perfection in understanding. But we do hope people at least care. And try. And we hope people won’t over-simplify what we are experiencing. That feels like invalidation of something that is very big and very real for us.
Some people want to better understand this so I’m going to try and explain more about it today and I’m going to be pretty transparent.
I know that I’ll be articulating perspectives that are not just my own because I’ve had emotional discussions with others about this very issue. One of those conversations was as recent as this morning when a friend called me from another state about the post I shared yesterday.
Yup. This hit some nerves.
When we don’t talk about our challenges very often, it is not uncommon for people to think that all is well. Some others who have some idea that life is always hard over here at the Jamiesons think we are just trying to keep a “stiff upper lip” or are wanting to be self-sufficient in our challenges. Some people believe we are trying to be “missional” in an effort to “look” put together with the power of God.
Seriously, we’re not trying to hide anything or even prove to anybody that “God’s got this.”
Don’t get me wrong, I certainly hope my life points people to Jesus and shows that God is fully able, accessible and worthy to be praised. Because He most certainly is. I don’t know how anybody lives through a crisis like this without a relationship with Jesus Christ. But that’s not what underlies my philosophy (or for lack of better word, strategy) for deciding when and how to share the inner realities of my situation.
Of course we hope people will somehow see Jesus in us — whether through how He meets us in our challenges or for any other reason! Don’t we all want to see evidence that the living God is real? But the way I express my stress publically is way more selfish than that. Larry and I are, first and foremost, trying to live in a way that helps us thrive as individuals, a couple and a family. In the process. We just want to live within relationships that are REAL.
I gave up trying to tough things out a long time ago. I do just exactly what I have to do every day to survive and thrive. So, trying to look “good” or more “Christian” is far from the reality for me and Larry. We always want to be authentic with people and we highly value people who are willing to be real with us. In truth, there are a whole host of reasons why I talk about our specific challenges or overwhelm rather infrequently compared to how often we are actually struggling. For today, it’s important to me that you know WHY. God seems to have prompted me to just lay it out here for whoever cares.
“I don’t want to look normal for your benefit. I want it for me. So even though taking a shower, fixing my hair and putting on a cute, comfy outfit to go out in public takes the alignment of stars at my house and risks masking a reality about how much I need your prayers, help and friendship — I’m going to risk it.”
So, in no particular order, these are just a few of the reasons why I personally don’t talk often or widely about the specifics of my personal stress…
I’m not always in touch with the reality of how extremely stressed out I am.
I function on autopilot a lot.
I don’t want people feeling sorry for me.
I have all the same stresses everybody else does and would really like those to be recognized as part of who I am too.
A whole lot of people would rather just believe that “it’s all good” over here.
Some people just want to cheer me up.
Some people tell me, “you deserve to feel sorry for yourself.” This isn’t helpful for me. I appreciate the attempt at empathy but I don’t believe this is right thinking and it is rarely helpful for me to go to that place.
I spend a lot of my daily energy trying to pace my energies and emotions. That means I have to spend proportionately high amounts of time with Jesus and in prayer. Since my physical body is increasingly deteriorating due to Carly’s 24/7 cares, my age, long years without adequate sleep, etc., I have to give some priority to taking care of me as best I can (which is never really enough). I need more naps than the average person because I spend a lot of time awake at night. I need to serve others. It’s a great outlet for me — gives me a sense of purpose and keeps me from feeling consumed with my own challenges. Needless to say, all of that doesn’t leave a lot of time left over for complaining and explaining.
Sometimes I’m just plain tired of explaining.
I don’t like people dismissing me as a “drama queen.”
I get tired of feeling like I have to be one of the world’s “teachers.”
I weary of the disappointment of trying to build understanding and having my hopes and needs for resonance dashed when people don’t “get it.”
I don’t want to get my hopes up that someone will care (reach out) only to be disappointed.
When my situation is most overwhelming, I feel unable to explain my situation or emotions. My mind and heart feel too complicated to explain. So, if I feel able say anything at all, I just try to articulate even one thing I know people can pray about or help with. But that can give the impression that just one thing is weighing on me. (Yet, rest assured, whatever I am saying out loud is probably just the tip of the iceberg with lots more behind it.)
It helps keep me out of depression and those woe-is-me places if I focus on what is going well and what I’m grateful for.
Focusing on Carly’s strengths gives her the best shot of reaching her potential.
Focusing on Carly’s strengths (instead of why she’s making things hard for me) feels more respectful to her.
Any time I talk about how hard it is caring for Carly, I risk undermining our ability to ever find or hire respite helpers (because people think they won’t be able to handle it).
I don’t want to worry my family.
I don’t want people to quit sharing their own concerns with me because they feel badly that their own issues may seem insignificant next to mine.
I often feel misunderstood and since I’ve been misunderstood a lot in my life, I avoid that pain.
I don’t want to feel analyzed.
I get tired of talking about the same thing. Being “that person.” Sounding like a broken record.
When you boil it all down, this is probably the biggest reason why you don’t regularly hear about or see the degree of my stress:
I WANT TO LOOK AND FEEL AS NORMAL AS POSSIBLE.
I don’t want to look normal for your benefit. I want it for me. So even though taking a shower, fixing my hair and putting on a cute, comfy outfit to go out in public takes the alignment of stars at my house and risks masking a reality about how much I need your prayers, help and friendship — I’m going to risk it. Because for a couple of hours, I’m happy to be clean and out in a “normal” world feeling like a “normal” human being with a “normal” life. Any illusion is for me. Not for you.
And here’s one more thought for you to chew on. If I wrote about this regularly, many of you would have stopped reading my posts a long time ago. You’d be too overwhelmed, irritated, or numb. My perpetual drip of whining would wear you down and lose its oomph. (For some people, it already has. They’re not even curious and are no longer reading this right now.)
So, consider this “rant” my way of trying to get your attention and urge you to remember there are friends around you struggling mightily with chronic hard stuff — whether or not they look like it or sound like it. Please don’t check out on them, whether they are good at how they handle their communication or not. (Doing this well is hard and even harder when you’re stressed out and/or sleep deprived.)
Thank you for listening. I’ll write again soon.
But not too soon.
NOTE: This blog is a repost from an “Open Letter” Lisa shared on Facebook in April 2017.
Celebrating its 17th year in March 2017, the Accessibility Summit is a national conference designed to offer a broad range of information and resources to individuals, families and caregivers, faith-based organizations, educators, and other professionals impacted by disability. There will be 40 workshops and over 60 disability-related exhibitors. Saundra Adams and Joni Eareckson Tada are guest speakers. Registration has just opened and early bird discounts and group discounts are available.
Walk Right In Ministries is privileged to be sharing a workshop too. Larry and Lisa Jamieson have presented at the conference in years past, sometimes individually and sometimes as a couple. In 2017, Lisa will have the unique opportunity to present with their two oldest daughters, Alex and Erin. Information about their workshop is shared below for those who have interest and for those who are willing to pray for us. (We are very grateful for your prayers!) Check the Summit website for a complete listing of workshops, exhibitors and speakers.
PARENTING SPECIAL SIBLINGSThis interactive session opens a dialogue about the challenges, disappointments, advantages and opportunities of being a sibling in a family affected by disability. It is led by Lisa Jamieson, the mother of three adult children and author of Finding Glory in the Thorns. Lisa is joined by her adult daughters Alex and Erin who share candid perspectives about growing up with a sibling who has Angelman Syndrome which involves chronic health issues and severe developmental disabilities. Discussion topics will include sibling conflict, balancing attention, grief processing, dealing with social stigmas and misunderstanding, family vacations and managing stress. Participants will leave encouraged with basic principles and numerous practical ideas about how to enjoy more victories and deeper graces despite the reality of weaknesses in every family.
Presenters: Lisa Jamieson, Erin Jamieson, Alex Jamieson Theme Verse: 2 CORINTHIANS 12:9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.”
Lisa Jamieson is a national speaker, author, consultant and advocate who serves as Executive Director of Walk Right In Ministries and leads Minnesota’s Disability Ministry Connection. Her books include Finding Glory in the Thorns and Living Your Glory Story. She is also creator of the Finding Glory small group curriculum, a favorite of caregivers and others wanting Christ-centered discussion through challenges. Lisa and husband Larry have three adult daughters. Her daughter, Carly, has Angelman Syndrome and lives at home. Their story has been featured on Words to Live By, 100 Huntley Street and My Refuge Radio Belize.
Alex Jamieson is a senior audit assistant at Deloitte (Minneapolis). Active in her church and as a community soccer coach, Alex also volunteers with Walk Right In Ministries as an occasional speaker and regular encourager to families experiencing special needs. She is the oldest sibling to a sister who has Angelman Syndrome. During her high school years, Alex worked as a personal care assistant and has since become a strong advocate for her sister Carly and others who experience disabilities. In her blog “Authentically Alex,” she reflects on a range of topics from setting goals to dealing with life’s transitions.
Erin Jamieson is a singer-songwriter and worship leader. Her songwriting, blogging, and speaking is often inspired by challenges and insights experienced growing up in a family affected by disability. The title cut from her debut EP Without the Dark is featured in the movie Season of Miracles about a baseball player with autism. Erin is a senior at Belmont University in Nashville where she recently performed in the 2017 Christian Showcase. Her latest release No Dream Too Big is available on NoiseTrade. Erin’s youngest sister has Angelman Syndrome.
Please share about this conference with your own friends, family and church leaders. You can forward this post and share the link on social media.
The Gospel answers hard questions and gives ultimate hope. The church has an enormous opportunity and responsibility to engage those questions, serve in love and wholeheartedly include people with disabilities in the life of the church family.
Paul describes the church using the metaphor of the human body. God arranged the members of the body as he chose. Some parts were weaker but indispensable and others less respectable but treated with special honor and greater respect.
(See 1 Corinthians 12:14-27.)
Doing life together well and according to the ways of Christ involves messiness. The church can not be self-preservational. Still, we all need to be patient with each other. People experiencing disability, for example, deserve to be fully integrated in the life of our churches. Likewise, people facing challenges need to be patient with the persevering church. That kind of patience is a form of grace.