What good?

A journal entry from March 20, 2017 from Ellie’s mom. Just shy of 3 months after Ellie passed away.

……………..

I think one of my greatest fears is the feeling that I have moved on from Elizabeth and somehow me being happy makes me feel like I don't love her anymore. That's how my heart feels and part of my mind, but I also know better. Somewhere along my journey as a Christian I got the idea that instead of asking WHY, we should ask God what good can come from this? Now don't get me wrong my heart is broken more than I could ever express, but I got this overwhelming feeling of confidence that one day I will know without a shadow of a doubt what good has come from this. I also believe that it will not be just one thing, but I do believe that there will be a moment, and so I wait with hope for that moment.

2.29.24

Now, years after Ellie’s passing, I am thankful for the Hope that God gave me that good would come from Ellie’s journey. I can get so caught up in the day to day of leading our organization, that I can truly sometimes forget All the good that has come from Ellie’s life.

As we close out this Thursday, I am filled with gratitude. Not that I have to live life without Ellie beside me, but that she is fully healed and living her best life in Heaven. And that good has come from the heartache and pain our family endured.

It's All HARD - You can do hard things

January 23rd, 2024 was 7 years since Ellie left this earth. I believe she is healed and in Heaven. I believe that we are the ones suffering still here on earth. But, while I am still here, there is work to be done. 

This April 27th, we celebrate our 5th year as a non-profit showing love to families affected by childhood cancer through Brave Box gift packages. 

Feel free to check out how you can engage here:

https://www.bravelikeellie.org/events/5thanniversarycelebrationdinner

I have been so busy working to meet the needs of the families we serve that I must admit sometimes I allow words like excited to fill my vocabulary. It is exciting to me to be able to lead Brave like Ellie. I am honored to do so and know that Ellie is healed. There are still days that depression takes over in a more subtle way than it is used to. This life without Ellie is pretty wild. Grief still exists and I believe always will. I believe that Grief and Joy can co-exist. 

Here is a blog post from 9/16/2017. About 8 months after Ellie passed away.

IT'S ALL HARD - We CAN do hard things

Life is hard. Change is hard. Cancer is hard. Life before cancer is hard, life after cancer is hard, life during cancer is hard, and so they say that Joy comes in the morning, but sometimes I wonder if that’s really true.

I sit here in my new back yard, listening to the fountain that is next to our house. The sound is peaceful, relaxing and I’m thankful for it. The breeze is blowing on my face from the cool air, and my heart is numb.

Okay, I lied. Nothing about my heart is numb. Rather, my heart is broken, into pieces. lots and lots of pieces.

Broken…because my outward appearance may show that things are going pretty well. And, some days things are going pretty well. I am moving through life, working, being a wife and a mom, and doing the stuff of life. Through social media and a few short communications with, part of my life is watching a few other families dealing with their children fighting their own battles with illness or cancer of some sort, whether it be after or before treatment. Once you are in the world of pediatric cancer, it never really goes away. Even when the doctor’s say the cancer is gone and the battle is won, 1 thing every cancer mom or dad knows all too well, is that cancer will always be present, even if all those stupid cells never return. Even when you’re beautiful 3 yr old loses her battle to cancer, and the cancer is gone since her precious body is gone, the cancer leaves a trail of destruction behind. like a hurricane, fire, or tornado that we have seen so much of these past few weeks. so much changes. so much sucks. So much collateral damage.

Broken, because I am lonely.

Broken, because I am sad, confused and tired.

Broken, because I am struggling with how to be a good mom and wife and friend.

Broken, because my role as a mom has been redefined. I remain a stepmom, as I have for almost 10 yrs now. I remain a mother to out 8 yr old. I now am a mother to a beautiful daughter who fought for her life fought hard, with beauty, and bravery, and sass, and spunk, and often sparkles, bubbles or a soft pink cape. damn it!!! What I wouldn’t give to see her strut down those hospital halls in that pink cape. damn it, damn it, damn it!

Broken, because at 37 years old we finally have the privilege of being homeowners for the 1st time. I wanted to buy my first house at 24 yrs old. I have been anxiously awaiting for it to be our time to be in that club.

Broken, because homeownership is not all sunshine and roses. We have an incredibly beautiful house. we have plenty of space in this house. plenty of rooms we still need to furnish and put together. it’s a good problem to have. I am ok that we have room to grow. We have an office that I have dreamed of for years, full of boxes waiting to have bookshelves so I can unpack our books.

Broken, because while we now have this beautiful home, with lots of space, only 1 friend has come to see it. No family members have come to enjoy it with us. Adjusting to living an hour away from the place we built our life over the past 11 yrs is hard.

Sadie sits giving me company, Rusty too, and even my new friend Mr. spider, who keeps climbing around and around my patio chair.

All of this brokenness is real, very real, but most days it’s just background noise in my life. Most days, it doesn’t stop me from enjoying a joyful life. Then there’s those other days.

I don’t want to be cancer, I don’t want to be grief, I don’t want to be loneliness, I don’t want to be broken.

I want to Be Brave.

Buy the good camera

You make me BRAVE Ellie. 

Love,

MOM

Brave like Landrie

Meet Landrie!

Many affectionately call her Teencie.

We have been honored to serve Landrie and her family for a couple of years now while she fought Myelodysplastic Syndrome. One thing we know is that once a child receives a cancer diagnosis, the impacts of that diagnosis are forever. We always HOPE that they are minimal, and really HOPE for none. We know that Landrie knows well some of these impacts. We acknowledge that she still deals with many negative impacts of her diagnosis and treatment. We think that there is value in acknowledging these challenges. While that is true, we also like to cling to HOPE! 

Brave like Landrie

Board Of Director Position Openings

We are currently looking for 2 individuals to join our team. The Program Manager will be leading the charge to show Love to our families and help build meaningful relationships with them. The Treasurer will be leading our team in all things financial.

Learn more about these positions below and fill out the Interest Form to chat with our team.

Fill out Interest Form

Board Member Interest Form

Program Manager

The Program Manager position with Brave like Ellie is a Board Member volunteer role. The time commitment varies, but averages about 5 - 10 hours a week, and between 20 - 40 hours a month. This position is responsible for organizing programs and activities for our organization related to providing Brave Boxes to the families we serve.

The primary focus of this role is caring for the families that we serve with Brave Boxes, and anything that supports that goal. The Program Manager will be tasked with developing and managing programs to support the organization's strategic direction, as well as creating and managing long term goals. This position will be in charge of developing budgets with the finance team to support our program.

The program manager will coordinate efforts between different projects and lead the overall program with strong attention to strategy, implementation, and delegation. Program managers are highly skilled professionals who help organizations stay on schedule, on spec, and ultimately on an upward trajectory of success and growth.

Each board member serves in these ways:

• Governance (only when a quorum present; group work) 

• Volunteer (individual contributions)

• Participant (attend organization events to meet, speak, listen) 

• Implementer (fulfill board policy when staff are unable)

Daily and Monthly Responsibilities

• Managing Brave Family relationships

• Reporting on Status of Programming efforts

• Supporting VP for events with Brave Box displays, reporting on BBB updates, and as needed

• Work alongside Vice President to support fundraising efforts

• Manage tracking of Brave Box distribution, family contact and relationship info, including family preferences

• Developing an evaluation method to assess program strengths and identify areas for improvement.

• Producing accurate and timely reporting of program status throughout its life cycle.

• Analyzing program risks.

• Be available to serve on the Finance Committee if assigned by the President

• Serve on the nominating committee

  • The Nominations Committee shall consist of executive officers, all board members, and anyone serving as a volunteer or committee member. 

---

Treasurer Role

The Treasurer position with Brave like Ellie is a Board Member volunteer role. The time commitment varies, but averages about 5 - 10 hours a week, and between 20 - 40 hours a month. This position is responsible for managing budgets and finances for our organization related to providing Brave Boxes to the families we serve..

The primary focus of this role is caring for the financial needs of the organization. The Treasurer will be tasked with developing and managing financial plans to support the organization's strategic direction, as well as creating and managing long term goals. This position will be in charge of developing budgets with the finance team to support our program.

The Treasurer will coordinate efforts between different teams and lead the overall financial plan with strong attention to strategy, implementation, and delegation. Treasurers are highly skilled professionals who help organizations stay on schedule, on spec, and ultimately on an upward trajectory. The treasurer will work closely with the Fundraising Chair to see the strategic plan through.

Each board member serves in these ways: 

• Governance (only when a quorum present; group work) 

• Volunteer (individual contributions)

• Participant (attend organization events to meet, speak, listen) 

• Implementer (fulfill board policy when staff are unable)

Daily and Monthly Responsibilities

• Manage transactions in Accounting Software, Quickbooks Online

• Lead Finance meeting and assign related tasks in Asana

• Present a complete and accurate report of the finances at each meeting of the members.

• Submit for the Finance Committee and Fundraising Committee approval of all expenditures of funds, proposed capital expenditures (equipment

• and furniture) , by the staff of the agency.

• Create, Review, and Balance Budgets

• File annual taxes as needed per IRS requirements

  • Complete and file required tax forms 

  • He/She approves the organization's annual tax filing.

  • Ensures that the organization adheres to any need to maintain 501c3 Status

• Track all contributions and expenses

• Serve as Chair of the Finance committee, along with 3 other board members

• The Finance Committee is responsible for developing and reviewing fiscal procedures, fundraising plans, and the annual budget with staff and other board members. The board must approve the budget and all expenditures must be within budget.

• Serve on the executive committee

• Except for the power to amend the Articles of Incorporation and Bylaws, the Executive Committee shall have all the powers and authority of the board of directors in the intervals between meetings of the board of directors, and is subject to the direction and control of the full board. 

• Submit annual reports to the board showing income, expenditures, and pending income. 

• Serve on the nominations committee

• The Nominations Committee shall consist of executive officers, all board members, and anyone serving as a volunteer or committee member. 

• Assist in direct audits of the funds of the program according to funding source guidelines and generally accepted accounting principles.

• He/She shall perform such other duties as may be prescribed by the President under whose supervision he/she shall be.

• He/she shall keep copies of the main financial records, sign checks the business manager, president or accountant writes, approve purchases and invoices and otherwise oversee and keep an eye on the organization's finances.

Halloween: More Than Just a Costume

Ellie Grace impacted my life in so many beautiful ways. I was privileged and blessed to spend time with her in her last few months on earth. One memory from that time that stands out was when Ellie and Kathryn wore matching mermaid costumes for Halloween in 2016. 

At a glance, these photos are of two precious sisters in matching Halloween costumes. But the emotion behind those images is so much more joy than a photo can capture… Ellie’s joy and excitement at matching with her big sister Kathryn. Kathyrn’s joy and careful attention at making sure that Ellie’s costume was laying perfectly on the grass. The way Ellie looked at herself while she was in that dress. The joy of watching Kathryn twirl in her dress and watching Ellie trying to do the very same thing. They brought joy to the Johnson family in those moments, and made Ellie’s medical struggles fade away, even if just for a couple minutes.

Ellie continues to impact my daily life in 2020. As a result of her journey in the hospital, I pursued my Masters in Child Life, a field that provides psychosocial and coping support to patients and families in the hospital. Child Life Specialists provide procedural preparation and support, new diagnosis education, sibling support, coping support during long admissions, and so much more. The way we provide this support is through play—the language of children. 

One of the most important aspects of play is  “dramatic play” or dress-up play. Dramatic play is a type of play where children take on roles, pretend to be that person/character/animal, and act out different scenarios. Dramatic play is vital in early child development as it promotes emotional expression, self-regulation, provides a sense of control and autonomy, and encourages their imagination. 

So as I reflect back on Ellie in that mermaid dress, that time represents more than just a costume. It was Ellie understanding the world around her more clearly. It showed Ellie taking on a new character, one where she could dance, wave her magical mermaid wand, and be in control of her story. I look back on that moment with so much gratitude, both for the time with the Johnson family that day and for the beautiful example of how children live through play. 

As we prepare for a Halloween that will likely look different than years past, focus on the opportunities this day brings for dramatic/pretend play for your kids. Let them get their costumes dirty because they are running around the back yard. Let the couch become a pirate ship, the blanket become a cape, and the box in the garage become a space ship. Encourage them to be in charge of the stories they tell today. 

Kelsey Barber, MS, CCLS 

Secretary, Brave Like Ellie 

Wellness Tips - Supporting Your immune system...

As children go back to school and we get back to more normal, it is important to make sure your immune system is healthy.

Please see attached for a document from Debbie Goff, a local wellness coach. This document will give you practical tips to keep you and your family healthy.

View fullsize