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.
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.
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.
July 4th memories - By Jennifer and Angel
As you prepare for your holiday in uncertain times such as this, our Hope is you find some JOY! As the month of July officially opens today, I am reminded of memories of the 4th of July holiday over the years. In the Johnson house July has some important dates for us.
As the month of July officially opens today, I am reminded of memories of the 4th of July holiday over the years. In the Johnson house July has some important dates for us. Both Bill and Kathryn have birthdays in July, exactly one week apart from each other. Kathryn was due on July 4th so there will always be a sense of connection to the 4th of July for that reason, along with many others. Personally, I love the spirit and festivities of the 4th of July and always look forward to celebrating with family, friends, fireworks, and food. In 2016, Ellie underwent treatment for MDS which turned into AML, endured innumerable medicines, chemo, transfusions, and much isolation. Her hospital stay for treatment began in February 2016.
By July 1st 2016, Ellie had undergone one stem cell transplant, a relapse, and was preparing for her 2nd transplant later in the month. The days she was inpatient in the hospital were in the hundreds at that point, and we were looking ahead knowing that it would at least be another 6 weeks in the hospital but likely longer. We had no idea what was ahead of us. So as I reflect back on this time, I realize how important this break really was for our family. Ellie was sent home from the hospital for various reasons for approximately a 2 week break, but looking back, I think the doctors knew our family needed some time at home and they had an idea of what journey was ahead. So in July of 2016 our family spent about 2 weeks in isolation at our home and for the 4th of July we painted our nails, made the best of our time together at home, but this definitely wasn’t a usual 4th of July for us. And, the journey ahead was a cloud over our lives. A very special friend of ours made a connection that created memories that we will have forever.
Girl time! Painting our nails!
Our friend Angel has shared that story from her perspective….
Every 4th of July I am reminded of a day that made such an impact in my life. I had the opportunity to make sure a very special family got to experience a special night. Ellie’s immune system was way too compromised to be out around people but her parents so wished she could experience fireworks that year. For once she wasn’t in a hospital and it would be so amazing for her to watch some fireworks. I reached out to the owners at Sabine Creek Ranch who were hosting a big Fourth of July event and they were amazing. They were immediately moved to help accommodate her and made sure all the employees were aware of the special parking spot just for her. When the Johnsons arrived they escorted them to a parking spot designated just for them to have a front row view to all the festivities. When I saw them I was so excited to see that happy girl's face lit up with glow sticks from inside the minivan. While all the other kids ran around squealing and playing they were confined to the van. I got to get up close with glass between us and wave and giggle with them and for a brief moment it was joy. To see her face when she saw the fireworks go off was priceless!! I am forever grateful to see that reaction. That childlike wonder. And I am reminded to seize the moments. Make them count. And go make the memories, those are what last forever.
I love you Johnson family. Forever friends, Angel Brown
DitchTheBricks
“Dare to dream differently”
Fireworks….here we come!
Such incredibly bittersweet moments here.
“As you prepare for your holiday in uncertain times such as this, our Hope is that you find some JOY! ”
Evolution of Mother’s Day ~by Ellie's Mom
Jennifer’s Evolution of Mother’s Day
Mother's Day for me has changed quite a bit over the years. My 1st experience with Mother's Day was celebrating my own mother, my 2nd shift in Mother's Day was celebrating my mother in law. I am so incredibly grateful for both of these women and the love that they poured into my life. …..
Mother's Day for me has changed quite a bit over the years. My 1st experience with Mother's Day was celebrating my own mother. While my 2nd shift in Mother's Day was celebrating my mother-in-law. I am so incredibly grateful for both of these women and the love that they poured into my life. Father's Day, on the other hand, has been a difficult holiday for me for many years. My dad passed away more than 20 years ago. I miss him greatly and long for his presence in my life. Once I met my husband, Father's Day became about celebrating him as a father of my stepsons. That shift actually healed some of my pain about the loss of my own father. I still cherish these holidays, Mother's Day and Father's Day, even though they have amplified the pain in my life.
I truly believe that being a parent is one of the greatest honors in life. It is a precious gift to have the opportunity to care for a child. Yet, I also believe it is one of the most challenging things in life as well.
This Mother's Day, as I reflect back throughout my life, I know that both my pain and my joy are also felt by other mothers and their children across the world. I also know each one of us has a different experience, emotion and feeling about the day. My hope this Mother's Day is that each one of us can focus on gratitude, that we can focus on Choosing Joy in the midst of whatever life has handed us. My hope is that the moms of a child gone before them, that they can be comforted, that they can feel the love of those around them, that they can have beautiful memories of their child that will never be in their arms again. As a mother that has lost a child, I have felt no greater pain in my life. While that is my truth, I also feel comfort in trusting that there will continue to be JOY and HOPE on the other side of loss.
I know that there are moms this Mother's Day that are watching their children fight cancer. And being honest, those words still really make me mad. It makes me mad that kids have to fight the battle against cancer. It makes me mad that parents, siblings, family and friends have to watch this fight. My greatest HOPE is that each of these mothers feel loved and cherished and cared for. That these mothers know how much their children love them.
My hope for our Ellie is that her life can bring HOPE, LOVE & JOY to others.
I stopped or slowed counting some of Ellie’s cancer battle milestones (I guess that’s what you call them) after Ellie passed away. What I do know…It's been too long living life without her. I have endured incredible pain over the last several years. And yet, I have also seen so much HOPE. The HOPE manifests itself in different ways, but I am thankful for it in whatever way it presents itself.
So today I ask that you think of those that may feel incredible pain and sadness this Mother's Day. Knowing that this day brings both Joy and incredible PAIN. I ask that as you reflect on Mother’s Day, whatever this day means for you, whether you are a child or a mother, I hope you take time to Choose Joy, whatever your circumstance. I know that there are so many people that won't be seeing their mothers this year on Mother’s Day, and so many Mom’s that will not be seeing their children on Mother’s Day. May everyone feel comfort in the midst of pain. There is one thing I know for sure today, and that is there is unity across our globe as we are all affected by the challenges of COVID-19. And, I for one hope this unity is one that will continue when COVID-19 is a distant memory.
May you Be Brave today. I know I will be!
Love, Jennifer
Forever Ellie’s Mom
Thankful for each one of my children!! Happy Mother’s Day to you all!
Love to you all!