Category: Angelman Syndrome

Selective Sharing

A few months ago, I posted this statement on Facebook:

“I don’t believe it can be overstated how stressful and wearying it is being the parent of someone with significant developmental and medical needs. There is also unspeakable joy. But make no mistake that this life is OFTEN more than overwhelming. I speak for my own family and many others when I ask you to pray hard and regularly for anyone you know living this life. We need your persevering friendship and sometimes help. We wish we didn’t need help, and very often we don’t even know what to ask for. But we can’t do this alone. Practical, emotional and spiritual encouragement is a gust of wind in our sails.”

Lisa Jamieson’s Facebook post | April 2017

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. 

SHOCK
WORRY
APATHY
DEFENSIVENESS
RESONANCE/APPRECIATION

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.


Accessibility Summit 2017 in Washington, DC

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.
Thank you – we hope to see you there!

Whole-Hearted Engagement With Those Who Suffer Isn’t Optional

Loving and praying for each other is not optional and scripture doesn’t leave room for anything but whole-hearted engagement with people who are suffering. True, it can be overwhelming, scary and messy learning to engage in the lives of others when their needs are  complex (e.g., disability, mental illness, aging, traumatic injury, chronic illness). But people with atypical lives are not a liability to the church. They are what enrich the church! 

No situation is too big or too complicated for God.


Delightful Opportunity for Dance Studios & Special Needs Families Nationwide

Do you know a child with special needs who would jump, twirl, bounce and hum at the chance to be part of a dance class? Darby’s Dancers is a wonderful new adapted dance program (non-profit based in Alabama) that has been growing rapidly nationwide. My daughter, Carly (with Angelman Syndrome, del+) has been in the program for 3 years and loves it!  Classes and costumes are FREE to students with special needs and each student is paired with a volunteer coach-helper.

I have come to know the founder of the program quite well and have offered to help her get the word out to others. Here’s her greatest challenge:

In signing up new studios to host Darby’s Dancers programs, they are finding that studios are very eager to support the concept but apprehensive about whether they will get enough students to fill their class(es). For example, right now Darby’s Dancers has two studio owners on the brink of signing — one from GRAND RAPIDS, MI and the other in MADISON, WI.

There is no question in my mind that lots of families want this type of program. It is just a matter of getting the word out. And as I know all too well, non-profits have limited budget for marketing. So we need to rally the word-of-mouth troops — and that’s YOU. Please help spread the word about this fantastic opportunity! Studio owners and the Darby’s Dancers team want to connect with parents of children who have special needs and organizations who serve them. These connections help them get the word out and build confidence with potential host studios that there will be enough interest.

Anyone interested in having a child participate and studio owners wanting to know more about offering classroom space should contact Valerie Jones darbysdancers@yahoo.com.
http://www.darbysdancers.com

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.