This post has been a long time coming… in part, it has been really difficult to write and think back to these specific days, but also- life! It has been a whirlwind 5 years since Elijah has died, but his memories, stories, and legacy continue to live on SO strong. Because of this, I knew it was time to get it out there... To talk about those last days. To celebrate the legacy that has continued to be built in the last 5 years. Elijah HAS a story… our goal is to continue to share it and speak about all the Lord has done and continues to do with it.
all back together after the longest hospital stay! |
So, how do you even start a blog post that is 5 years old? For those of you who are new here, I (Britta) started a blog early in Eli’s diagnosis (Muscular Dystrophy) days to give mass updates, celebrations, and prayer requests. Looking back at our blog, our last post was about Eli’s discharge from his longest hospital stay ever. The world had shut down due to COVID (March 2020), and we entered Hospice Care in our home which allowed us to give Eli the pain medication he needed to prevent him from crying 24/7. This was a huge answer to prayer after we had been stuck in the hospital for weeks without knowing how we would be able to get discharged - the pain medication that was working for Eli could only be given in the hospital… so putting Eli on hospice care opened up more doors and avenues to get the medication he needed while at home.
When we got home from the hospital - our world was flipped upside down, but we were ready to take it in stride together. With a younger sibling (Ava), these long hospital stays were so hard on everyone. Mom or Dad slept at the hospital almost every night and both of us kept working during these stays. Ava was so well taken care of by family & friends, but being all together and unable to leave our houses due to the shutdown was a really weird blessing in disguise. We got so much time together and tried to do the best we could to enjoy our last month with Eli. When we left the hospital in “hospice,” no one really knew what that timeline meant… we were told we may have just a few months left with Eli, or possibly several years. It just depended on how Eli continued to tolerate his central line feeds and neurological pain.
birthday party in bed! |
Our first week we were home from the hospital (3/18-3/24/2020) it took Eli some getting used to his new pain medication (continuous lorazepam through his subq needle & PCA pump). There was not a lot of sleeping happening… and we had to supplement with other pain medications and Benadryl to try to get some sleep. The second week home from the hospital was really good (3/25-3/31/2020)... We had several happy days and I think 3 or 4 nights in a row where we didn't need to push the button on his pain medication overnight!
Then starting the night of 3/31, things took a turn. We began having lots of nights of pain - just so much crying and discomfort. Nothing would work to calm him down - lots of added pain medications and it still wouldn’t calm him down. We had a really scary vomiting episode on 4/2/2020 where he choked and turned blue - something new for Eli. Eli had GI issues his whole life… near the end of his life, we added a discharge bag to his stomach to relieve pressure. It wasn’t glamorous by any means, but another sign that something was off for us because his discharge bag was filling up faster than ever. Another concern arose - his hemoglobin dropped to 8.1 (typically the medical professionals didn’t want this reading below 11). Then we began having lots of issues with his subq needle (where his pain medication was administered)... it needed replacing 4 times in less than a week... So, we knew he wasn’t getting his full dose of pain medication, this resulted in a very uncomfortable Eli.
We were also struggling to move him - physically bringing him downstairs to hang with the family. So in our mind, we just needed to get the needle to stay in so he could get his pain medication.The next 3 weeks were a fast moving, whirlwind. The week of 4/9-4/15/2020, his breathing became a big concern- needing higher oxygen, sounding junky, and rapid breathing… looking at him without a medical degree, you could tell it was hard to breathe. His pain tolerance was starting to get better and he became very sleepy by the end of the week. This is when we started looping in our GI doctor and Lutheran General Hospital doctors with hospice to have Zoom meetings. Everyone was mostly concerned with his breathing - at the time we were thinking this was more related to his hemoglobin and we needed to add more breathing treatments.
Easter 4/12/2020 |
The week of 4/16/2020, we had some very long calls and talks with doctors and the hospice team every day. Getting a blood transfusion was not an option - the risks outweighed the benefits. We asked for complete honesty from everyone on our team from the beginning, and they were very honest with us this week that we are losing his breathing... and typically this means he only has weeks left to live. They called this phase "transitioning" with "actively dying" the next phase. His body was shutting down. In the last year of Eli’s life, it had been obvious that we were losing his GI system. Our doctors told us it can be typical for brain atrophy patients to be so good for so long with breathing/heart, and then "crash" suddenly. Because he was starting to shut down, his little body was overloaded with fluids. At the time he was fed through a central line with TPN and his body wasn’t absorbing it, which is why his lungs were worsening and sounded full of fluid. (Turns out his hemoglobin dropping was also probably a sign that he was just overloaded with too many fluids.)
Our goal during his whole life was to keep him comfortable and see his smile... When that was no longer possible, we knew it was time to have the difficult discussions that we didn’t want to have. With the new knowledge of being at “end of life” and that he had too many fluids on him- we lowered TPN (his food source) little by little and started him on latix. Then we continued to transition to stopping TPN and all IV fluids all together. This did eventually lead to a little more comfortability for Eli and a more exhausted Eli- he was very sleepy in his last days. On 4/20/2020 during the day, our hospice team coordinated for a staff member to come over and help us make memory keepsakes. We were able to do fingerprint projects, Mother’s Day gifts, and the most amazing hand mold of all 4 of us holding hands (Eric, Britta, Eli, & Ava).
The night of 4/20/2020 was a really bad night for Eli’s breathing, his oxygen was reading extremely low on his pulse ox even with his oxygen machine on as high as possible. When we let our hospice team know this, they warned us that he probably had less than a day to live. We were thankful to know this and were able to have friends and family over the morning of 4/21/2020 to say goodbye. Ava was able to say goodbye and then go have an escape to MorMor and Gruampa’s house for a sleepover. Eli died in our arms in his bed ~11am on 4/21/2020.
The next few days were a whirlwind of funeral preparations, finding a burial spot, picking out a casket… things you never want to do as a parent and we were trying to do this all while the world was shut down due to COVID. We also had to work with his home health company to give back a lot of his medical equipment, which allowed us to turn his room back into a little boy’s room and not a hospital room. Thankfully our church helped us with a connection to a funeral home and allowed us to have a small, immediate family only, funeral at our church on 4/24/2020. One of our pastors who had gotten to know us and prayed for us along the way helped us lead the funeral. Britta’s small group leader blessed us with beautiful worship songs. Then we got to bury Eli only a few blocks from our home - a spot we still visit often.
Throughout Eli’s challenging life, we were sustained by unwavering support from family and friends near and far, most of whom couldn’t make it to the funeral. So, on 4/25/2020, we invited our friends and family to celebrate Eli’s life with us by posting things that made them feel brave and that brought them joy. We spent the whole day crying happy tears while reading your posts and thinking about the widespread impact Eli had in his short time on earth. We also asked friends and family to paint rocks or stones with messages or beautiful pictures that we used to decorate Eli’s grave with.
Life Since Eli’s Passing
Ava, even though Eli passed when she was 2.5, has had a strong sense of remembering him and missing him often.
We welcomed Jenna JOY Peterman, a beautiful healthy girl, in March 2021… Eli taught us all about the joy of the Lord, so we knew we wanted to carry on a piece of his legacy in her name. Fun story: after a whirlwind day of delivery... Eli had to remind us again of what he taught us. As we were getting wheeled down to our room with Jenna, our nurse (who switched to be with us) gifted us with this rock. It is something she painted in the beginning of COVID and has kept in her pocket for almost a year. When she heard our story of Eli and knew Jenna’s name, she said she had to let go of this rock and give it to us.
Each year on Eli’s birthday (3/17), we decorate Eli’s headstone and celebrate with balloons and cake.
Yearly we celebrate “Honor Eli Day” on 4/21. We ask our community to participate in an act of kindness day by spreading bravery and joy to those around them in Eli’s name. Every year we (Petermans) support a special needs family, support staff, or organization with a donation or gift in Eli’s name.
Ava & Jenna love to visit Eli and decorate his headstone. We bring him crafts, flowers, pinwheels, holiday decorations, you name it. Every year, we watch caterpillars grow into butterflies and release them at Eli’s headstone.
Team Eli, our charity race team, is staying strong and still putting in A LOT of miles to bring more awareness and funds to the Muscular Dystrophy Association!
Total donations to date since creation: ~$300,000!!
We are running races all over the world (Chicago, NYC, Berlin, Vegas, Boston, Nashville… and in one week London!)
Continue to host “Miles for Eli” every October around Chicago marathon weekend to log miles by walking, running, or biking for Eli
Ava & Jenna got to run in their first big race for Team Eli in Nashville in April 2024
Each year, a teddy bear made out of Eli’s clothes joins us in our family photos.
We created a “God at Work” video for our church… which was a blessing for us to have our story in such a keepsake video of our testimony.
Interviewed by WGN thanks to Britta’s Aunt Sue nominating her for “most remarkable woman”
Many of Eli’s specialist teams have used Eli’s case as a learning/teaching opportunity for residents with our permission.
"Your struggles are not in vain. Your pain is not without purpose. Your weakness may very well be your greatest strength. Because, dear ones, when it comes to the story God has for you, the pieces that fall into place are never in error, even if we don't see how they work together. You are in the middle of your story for a reason - 'for such a time as this.'” -Unknown
2 Corinthians 1:4 “He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.'"
Eli forever changed us for the better. The pain of his story had such a greater purpose for us personally, but as we are watching the ripple effect of his story reach out… we know that there’s a greater purpose for our community and others as well. We thank God for our short time with Eli and the storm that rooted us more deeply in Him. “For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. For the creation waits with eager longing for the revealing of the sons of God.” Romans 8:18-19 ESV
What is one big thing we learned from Eli that we want others to know:
Eric: I’ve learned to release the illusion of control I once held. Through the life and challenges we experienced with Elijah, God shook our world—but in doing so, He showed us how beautiful life can be when we grow through those struggles and fully trust that His plan is greater than our own. We praise You in the high and we praise You in the low. God is good, all the time. And all the time, God is good.
Britta: God is good. His purposes and plans are so much better than my own… and I am still learning to give God back the pen to my life’s story and watch what all He can do!
Ava: To be brave! He had a lot of pain, but he could get through it with God. So I can be brave too when things are hard with God’s help.
Jenna: He always smiles! He had joy from God.
God-willing, we’ll keep sharing Eli’s story. A story of faith, bravery, and joy that only God could write. Thank you to all of his followers - you are TEAM ELI. Your encouragement and support have meant everything to us. We hope you continue to be blessed and inspired by the gift that is Elijah Ted Peterman.