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

Like a TON of bricks

I went to Facebook tonight and went to my Facebook Memories. And only then did I remember what tomorrow is. On 11/13/2015, the doctor's said that Ellie had cancer and the journey began. I am shocked that I made it to this date and didn't remember. My birthday is Thursday, the 14th and I remembered that. I got done with our board meeting around 6:15, ran an errand and came home and felt down and just wanted to go to bed. Then the facebook memories made it clear why I was feeling down. My body knew the date, even if my mind had forgotten.

Anyway, this prompted me going through some old journal entries.

Here is one. Ellie passed in January 2017.

Jun 30, 2017

Like a ton of bricks

...this thing called grief hits...like a punch in the gut, or a rush of emotion that takes your breath away, and moves tears from your eyes. They just don't move, they flood your eyes and your face and pour down like rain. Tears so great, and emotion so strong that you feel like you can't function.

(I wrote this last night, but our Internet is down)

I suppose there is a numbness that comes along with grief as well. The rawness of the emotion felt soon after Ellie passed has changed. In some ways, I feel like my heart has hardened, like I am less willing to be open. Or, if you catch me at just the right time, I will share with you things that may seem harder for you to hear than for me to say. As I navigate this crappy road of grief, I know that there are triggers. Triggers for my sadness and pain and intense emotion of losing our sweet Ellie and how sad that makes me. and how mad. It just stinking pisses me off!! I hate it. Every single day I hate that we only got a little over 3 yrs with Ellie. Somedays, I will say how thankful I am for that time, and I will always be thankful for that time. That being said, I am not sure if the day will ever come where I understand that there was another plan. I know that God was with us, is with us and will continue to be with us. I do have questions now that I never thought possible. I do have anger. I am angry at God. I am angry that, in my perspective, we were willing to praise Him and Honor Him, even when life sucked. And her pain and lack of healing was so great. What I wouldn't give to have her back in my arms.

Most days, life seems ok. Some days, it even feels good. Of course, it is so different than when Ellie was in it. Then today, I went to work on some things around the house, and the damn grief hit me. Hit me, and hit me again. When Ellie was home during her sickness, the majority of the toys had made their way to our living room so that we could create a "safe zone" and have Ellie under our eyes at all times. Over the past few months, we have been working on adjusting the house to our current needs. Bill had moved the toys to one of the empty bedrooms awhile back. And, something in me said that I was ready to deal with some of things. That something in me was wrong.

One of the things I learned the most from those of you that reached out and lifted us up, is that when someone is having a hard time, help them. And, if you don't know how, just try. And, if you try and it seems to be unhelpful, know that your intentions were seen, especially when they were pure intentions, with the desire to help. A simple text that says, I am thinking of you, or love you. Or know that life is probably hard, but I am praying for goodness, and God's presence. Sending gift cards or money was such a blessing to us. And, we know we will be able to help others in need. I still feel indebted to so many people for the outpouring of support. I have a long, long list of thank you cards to write. Thank you cards that I should have written months ago. It's one of those triggers though. Despite my strong belief to walk in thankfulness whenever possible, I am also often paralyzed by fear. In this case, fear of facing a trigger. I have realized that I think fear is my demon. It is the one thing that keeps me from doing so many things. I have come to realize that I am an all or nothing person. Go big or go home. But, when I go home, I can't get out of bed. And, some days I am ok with that.

It's almost the end of June, and I just now feel like the idle time is kicking in some. As soon as school got out, we made the trip to Ohio, and I have had the opportunity to work at the school some in June, and now I have a test to study for. I returned to work in February, I was afraid to go back and face my students, and peers, and coworkers. I was afraid of the outside world. I would make goals, like when running long distances. I had a trainer once tell when training for a half marathon, to look forward at something, and make a goal to keep running until you get there. So, say there was a fire hydrant down the street, and I felt like I couldn't run anymore. I would say to myself, "just make it to the fire hydrant." Then if I wanted to stop running at the fire hydrant, I could. But, most often, I would keep going. If the run was really tough for me, I would slow down and walk for a brief period, and then start running again. Other times, I would get to the fire hydrant and pick another something to run to. And, another, and another, and another, until the 5, or 6, or 7, or 13 miles were done. I never in my life thought I would run a half marathon, will probably never run a full marathon, but with perserverance, discipline, trainers, friends and people supporting me, I was able to complete 2 half marathons. It's been a few years, but the accomplishment I felt will always remain with me and having a long-term goal, and working towards it has moved me to face fears. Back to work...When I returned to work, I would set short term goals for myself. The 1st day I returned was a professional development day. The students had the day off, but us teachers had to go to training. It was the only way I could see somewhat easing into the return to work. Then I would make another goal of making it through 1 class with students, then a day with students, then a week. Then months. And, as many teachers will also say, summer was my finish line. And, I crossed it. Here we are. Summer.

As some of you recall, I had some envy about summer vacations last year. Beach vacations, time with family, time in the sun and water, with no worries of sickness. I think I will always chase hope. I guess I am a woman full of both fear and hope. Fear of so many things, but hope that blooms, and lingers, but then sometimes fades and then dies. As I was sitting sick with envy, in the hospital with Ellie last June, I also sat with hope that this summer would be my summer. My summer to spend with all 4 kids, on the beach. Ellie well and cancer free. In remission from that stupid MDS and AML. With Ellie having no port, or picc line, or broviac line that would keep her unable to get in the water. Losing a child changes you. I know we all die. That is inevitable. What I sometimes have such a hard time understanding is why it is so hard for us when someone we love dies. I mean, my faith in God says that I will see her again. But, what does that really mean. Do I get to hold her in my arms, or just feel her spirit near me. God, I wish I could hold her, and hear her say Mommmy again. Once the effects of the leukemia really hit Ellie in December of last year, her health went downhill, and fast. And, our once very verbal, articulate 3 yr hold got quiet. And, that was one of the hardest parts of seeing her struggle. The mom heart of mine broke over and over again. Feeling guilty for wanting to hear her voice more before she passed away. Hoping that despite what the doctor's all over the country predicted, that our sweet Ellie would be that story, the one where she was healed against all odds.

And, here I sit. With a different reality. With summer beach trips still plaguing me. And, no. I'm not mad that you are at the beach with your family. In fact, I am happy for you. I want you to enjoy it. Even through my off and on envy, I smile when I see you at the beach. andfor me, please enjoy that time, the good and the bad of it.

Well, I sure did not expect this grief tonight. Nor did I expect to write this much. So, if you made it this far, thank you. For taking the time to hear me.

And, to all a Good Night.

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.

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