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. 🙂

Family Update from the Jamieson “Cocoon”

In a general sense, our family is doing quite well. We have been learning to cooperatively “cocoon” during the COVID-19 crisis. That means we’re trying to be attentive to our own personal needs, sensitive and respectful toward each other’s needs, protective and compassionate about of each person’s unique vulnerabilities and just generally trying to make the most of this unprecedented time. 

We’re trying to build bonds rather than allow the challenges to undermine them. This is not to suggest that we are always doing this well. But we are trying. For all the things competing for top of the priority lists, this idea of being an encouragement to one another has been at the top of ours. And it’s helpful to have a vision for some purpose in this surreal time. #CooperativeCocooning has been a helpful goal for the Jamiesons. (Read Lisa’s article on Cooperative Cocooning.)

We actually have more help right now with our daughter Carly than we’ve had since early August 2019. In addition to Carly’s usual full-time caregiver-friend (paid staff), one of the women who worked with her until college started last fall is wanting to work now that she’s back home studying online. We are tremendously grateful that our two respite providers are considered “essential” by our Governor and that they’re willing to strictly self-isolate for an indefinite period of time. Honestly, I would be out of my mind right now without them but mostly because Carly would be out of her mind without them. 

But there’s more to it than their just being essential for Carly’s wellbeing and my personal sanity. We view Carly’s respite staff as part of this family and ministry team. We are so grateful they feel the same way. These women work behind the scenes enabling me to do what I do every day. And they are fueled by the same passion we have to see the lives of special needs families worldwide enriched by a community sharing faith in Jesus Christ. God bless them!

For all the things competing for top of the priority lists, this idea of being an encouragement to one another has been at the top of ours.
#CooperativeCocooning

Carly is gradually adjusting to the new routines. She and I are actually on Day 24 because we were home alone for several days at the beginning of this while Larry was traveling for work and Carly’s staff support was on vacation. Those first two weeks were awful. Now that we’re learning a new groove, we’ve found it very helpful to arrange our quarantine days in ways that mirror the former routines as much as possible. For example, as the girls can no longer head to the gym shortly after lunch every day, I try to break from work and join them in the family room at 2 pm when a group of students and alumni from our daughters’ former high school do a workout on Zoom. 

Each day has it’s very difficult moments, particularly when trying to manage Carly’s outbursts of anxiety, restlessness and confusion. She is used to being on the GO! She does not like this boring lifestyle one single bit. It’s affecting her disposition (rather violent at times) and her sleep. 

Since Larry and I both work from home, this season has been “business as usual” in many respects. But some things have needed extra attention in the areas where we serve. My counseling ministry and special needs family outreach demands more creativity and time during this season. Larry is working extra hours on a team helping navigate the implications of the virus both logistically and financially. Short nights and stressful bedtime routines with Carly add strain. 

Our prayer requests may be very similar in nature to yours:

  • Continued health and protection for our family. Larry and Carly are both in the high-risk group for the virus. Our daughter Erin lives near the northern California hotspot and remains in lockdown with three roommates. Our daughter Alex lives alone in a Twin Cities area condo where she has been working virtually since early March. She is holding to strict isolation standards so she can be backup care for Carly and visit us every week or two.
  • Adequate socialization for Carly and her caregivers. Carly’s weekday support worker needs a fair amount of adult conversation and deep connection so working with non-verbal Carly alone all day and going home to an introverted roommate at night means we are working harder here to complement and cooperate with each other’s needs.
  • Anxiety management  (creativity). We are adapting new activities to meet needs within the limitations and keep Carly as content as possible.
  • Sleep. Enough said.

Friends, let’s pray with and for each other!

Lord, develop in each of us more patience, perseverance, trust, hope, kindness and gentleness. Comfort us in fears and grief that comes in waves during this pandemic season. Remind us that you are fully accessible and that we can intimately share our hearts with you in every single moment — the ugly moments and the precious ones. Would you multiply the precious moments, Lord Jesus? We need You to protect and provide. Yet in sickness and in health, You are faithful. May Your sovereign purposes prevail. We want to rest in that peace. 

Thank you that learning to slow down and focus on our relationships is a gift we can receive in the midst of this season. Teach us how to be attentive and compassionate about each other’s needs and cooperate with each other to meet those needs as adequately as possible in the circumstances. Help us to seek You first and things or people of the world second. Teach us to value Kingdom things above all else, putting our hopes, expectations and disappointments in Your perspective. Energize us by the power of Your Holy Spirit to think and reach outside of ourselves. Help each person in our quarantine “cocoons” to offer their lives as a spiritual sacrifice for one another without putting too much responsibility on any one person to meet the needs of another. 

O God, please make the precious lessons of this season grow deep and long roots in all of our lives! Above all else, teach us to love you and love each other well. 

Amen

This Pandemic Season Prayer shared by Walk Right In Ministries earlier last month has also been a source of encouragement and connection for many.

You all — our WRIM community of friends and partners — are constantly on my mind and prayers. Our Board and Prayer Team just received one of the longest updates ever in our history and we consider it great privilege to pray together for all of you!

How are you fairing with the stay-at-home orders? These are tricky days for most, extremely stressful for many and actually somewhat gratifying for others. I would love to hear how your family is doing and what is working for you as you try to adapt to these pandemic circumstances. Please drop me a note at lisa@walkrightin.org or ask to schedule a video conference.

You can also read more about Cooperative Cocooning here.


Lisa Jamieson is an international speaker, author, caregiver advocate and licensed pastoral counsellor. Her passion is spurring special needs families toward growing intimacy with Jesus and thriving relationships with each other. She is co-founder and executive director of Walk Right In Ministries and leads the Minnesota Disability Ministry Connection. Lisa is a member of the Sarasota Academy of Christian Counseling certified in Christian temperament therapy. Her books and Bible studies include Jesus, Let’s Talk which was inspired by her daughter, Carly, who has Angelman Syndrome. Lisa and her husband, Larry, have been married for 31 years and have three grown daughters.

New Light of Excitement about Praying with Kids

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! 
 Jesus, Let's Talk
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.

Write a Review
                                                             
Visit the Online Release Party
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 .