Tired and Weary

Journal entry from Jennifer on 12.5.2017

This gypsy soul is tired and weary. And, looks like little one is tired as well.

Some days I feel like I am on the verge of drowning in life. Some days, I feel like I am swimming. Either way, I feel like I need to keep it all together, whatever that means. My heart is broken living this life without Ellie Grace in it. My soul is wounded in ways I can't put into words. Life is good. Yeah. So. Maybe. Life after grief sorta reminds me of life after having a baby, except you don't have a baby to love on.

Returning to work from maternity leave is always hard, in so many ways. I know many of you can relate. Returning to work after losing a child feels very conflicting. It has been helpful in many ways, but I am weary. I am sad. I am dreaming of things to make it better. Those things I know not.

I still have all the pictures of Ellie on my phone that were there when she passed away. If I had to guess, it's probably over 2k of just her. But, I don't look at that intentionally often. It is too hard. That sweet, round face, that light complexion with beautiful blue eyes. I see her and my heart just sinks and aches for her. How. How in the world was I given the gift of such an amazing child, only for her to be ripped out of my life. Ugh...I can't continue this right now. Through this weeping, I can't catch my breath.

As I drove to school, I listened to Dave Matthews while Kat slept in the back. I was already feeling tired, weary and weepy, then I look down at the song and it was, "Grace is Gone." And it hit me, and I said to myself. Yes, Grace is Gone. Our sweet Ellie Grace has left us here, but we hope that we shall meet again one day. Here are some of the lyrics that I connected to this morning. I don't know the story behind this song, but I felt it.

Grace is Gone by Dave Matthews

Neon shines through smokey eyes tonight

It's 2 A. M. I'm drunk again

And it's heavy on my mind

I could never love again

So much as I love you

Where you end, where I begin

Is like a river running through

Take my eyes, take my heart

I need them no more

If never again I fall upon the one I so adore

[Chorus:]

Excuse me please, one more drink

Could you make it strong

Cause I don't need to think

She broke my heart

My grace is gone

One more drink and I'll move on

One drink to remember

Then another to forget

How could I ever dream to find

Sweet love like you again

One drink to remember

Then another to forget

Excuse me please, one more drink

Could you make it strong

Cause I don't need to think

She broke my heart

My grace is gone

One more drink and I'll move on

One more drink and I'll be gone

You think of things impossible

Then the sun refuse to shine

I walk with you beside me

Your cold hand lay in mine

Excuse me please, one more drink

Could you make it strong

Cause I don't need to think

She broke my heart

My grace is gone

One more drink and I'll go

Excuse me please, one more drink

Could you make it strong

Cause I don't need to think

She broke my heart

My grace is gone

One more drink and I'll move on

One more drink and I'll be gone

One more drink my grace is gone

Table lights

This season can be mixed with emotions. JOY to be able to serve our families with gifts for all the family members. Sadness and longing for Ellie to be with us. Thankfulness for the gift of almost 3 and a half years with Ellie. Excitement about Christmas with my family.

My ability to create a holiday season with my family since Ellie passed has had it's share of struggles. I have always loved holidays. Loved getting together with family or friends. Making food was always a key part of it for me. It seemed that any holiday revolved around food.

As the years go by, I feel like the sadness of Ellie not being with us is less raw. And that in itself can still be hard. The guilt of it. The fear of forgetting our time on earth with her.

This year, just a few days ago, I got lights on my balcony. Then tonight, I attempted adding more lights, but untangling them proved to be more than I cared to do. For now, they will be table lights, as Grant named them.

All of our Christmas Brave Boxes are out to our families. For that, we are so incredibly blessed and thankful to be able to bring love to them this holiday season. We pray that this lifts a burden for them. Reminds them that they are not alone.

We can’t take cancer away. We can though send a hug in a box.

I pray whatever the holiday looks like for you, that your emotions can flow freely, you can feel the presence of our Heavenly Father, give yourself Grace, and find Joy and peace amidst the craziness that can be Christmas.

Here are some tips from Grant Duckworth on how to maintain your sanity through the holiday season.

https://www.forged-mind.com/blog/how-to-maintain-your-sanity-through-the-holiday-season

How many of These 3?

Shortly after Ellie’s passing, one of the verses that stood out to me was 1 Corinthians 13:13. Today, I will step a verse back to share 1 Corinthians 13: 12 – 13

12 For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known. 13 And now these three remain: faith, hope and love. But the greatest of these is love.

THESE 3 REMAIN. Faith, Hope, Love. The greatest is Love

THESE 3 REMAIN. Trevor, Reese, and Kathryn

Recently, I added THESE 3 REMAIN. Bill, Kathryn and I. Since the boys are older, it is most often the 3 of us together.

THESE 3 REMAIN. Father, Son, Holy Spirit

THESE 3 REMAIN.

As I wrote this, I journaled it. So, much of the rest will be in pictures of my journal.

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. 

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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.