4.16.26 Aimee’s Last Earth Day

To begin with you must understand that we didn’t know this would be the last day. We knew that Aimee was getting closer, fading, but each day was a slow step and so we expected more slow steps. It was a beautiful day and part of its beauty was in the slowness, the unawareness of how little time we had. 

We canceled our plans for the day. It felt that we needed to be close. Ed and I had turns sleeping with Aimee through Thursday night. We cared for her together on Friday morning. In the late morning, a harpist volunteering through hospice came. She played her smaller size harp in Aimee’s room while watching Aimee’s face and keeping time to her breath. Each of us created art or wrote letters to Aimee while hearing the music. It was a sweet experience. 

We spent all day around Aimee, just being with her. She was slightly responsive. Raising her eyebrows in response to conversation. Her heart rate was highly erratic though and her temperature was oddly (for her) high, climbing through the whole day. 

In the afternoon, we did one of Aimee’s favorite activities together, a family chocolate facial. We used her special products. For a few of us, it was a first experience letting the cocao face mask pull dry on our cheeks. Lots of laughter. 

In the evening, we set up a table at the end of Aimee’s bed and played a game of 5 crowns. Louisa insisted that Aimee and her were on a team, showing her the cards as we went along. We took what would be our last family selfie together there. I spoke aloud my gratitude to be surrounded by our 5 children. 

Partway through the game we paused. It was 9:30pm and I felt strongly that each of the kids should have time one-on-one with Aimee before bed just in case. They each took turns alone with her saying goodbye and sharing their art/letters from that morning. Because we didn’t know it was so near to the end, we didn’t rush them. I am eternally grateful for the gentle, peaceful pace of that evening. At 11pm Caleb was the final sibling. As he finished his time, he didn’t want to leave her. We talked around her bed with him for a bit. Her heart rate had rapidly climbed and the pulse ox was struggling to pick up the rhythm it was so faint. We told him that we were going to put her in her favorite position and maybe her heart rate would come down some. 

Once Caleb left, Ed read her the letter he had written that morning while we each held her hands. We started doing midnight cares and placed her on her left side. We were both with her, both felt for her soft quick pulse. I took her temperature and it had soared so so high. Our hands were both on her as her heart beat stopped. 

There are so many little details about her final moments and day that we will keep sacred in our hearts, but I wanted to share a glimpse of how sweet it was that last day. We could never have laid it out better as a final day here for Aimee than it was. And dear Aimee, she was so gracious, as generously present as she had the capacity to be throughout her entire life and especially throughout her death. She let her light shine. She stayed purposefully through each sibling's time, waiting for Ed and I to be alone together with her. And now, she is shining her beautiful starlight into eternity. 

Aimee with her siblings a couple weeks earlier. 5 precious gifts. 

4.2.26 Grief

This time is oddly a combination of hollow and full. There is a thick fog around us of sorrow and a wrongness to each plan. Without Aimee here, every hour is different. The bones, the structure of our day is gone. The rhythm, the heartbeat of our family has stopped. She is no longer here. How can she be gone? There just aren’t words to describe the hole. 

Yet our days are filled with one big distraction: all of the medical stuff. We have communications organizing the pick-up of all these different companies’ equipment and machines, as well as the finalization of hospital plans, disposal of medications, funeral home direction, and nursing companies supplies. Canceling appointments and figuring out how to donate unused supplies and owned equipment. Even getting the death certificate has not been as smooth of a process as expected. Aimee was surrounded by a complicated torrent of needs that we suddenly don’t need. Things we have hoarded as back-ups or fought the insurance companies to cover or relied upon to stay safe at home, suddenly become just unnecessary stuff. It is hard not to feel like Aimee is being erased with each item. Each moment without her, we are farther from her. Her last loads of laundry. The tubing she used. The stethoscope still hanging by the ambu bag where we put it when she died.   

Her room is not often empty though. Her younger sister is frequently cuddled under Aimee’s blankets in her bed. Her brothers too or they sit next to it as we recall. We had gotten Aimee a digital photo frame for her birthday and we find ourselves sitting in her room just laughing and crying at the photos as they go by. Throughout the day we are calling for each other to come and see some picture or other. 

How can we go forward? Even the amazing things, like being able to go outside whenever we want or drive somewhere together, they even feel like a loss. The loss of limitations are like an emphasis that we no longer have Aimee here to plan around. And what hurts is to know that we will get used to it. 

In announcement style news, I have two for you:

Aimee’s memorial service will be held at Marysville Foursquare Church on April 25th at 3pm.

If you would like to donate to help us with Aimee’s end-of-life costs and memorial fund, there is a paypal link under the Support Us tab or there is a gofundme here: https://gofund.me/5f81252eb

Thank you for following along on Aimee’s journey with us this past 17 years. Every kindness has been a part of her story, every prayer and every gift and every heartfelt message. Thank you for being on Team Aimee Love. 

3.28.26 Goodbye

Aimee passed away late last night. When I am ready I will come back to share about her amazing last day and her beautiful death. Truly I could not have laid out her final day more sweetly. For now, here is Ed’s final letter to Aimee that he read to her just minutes before she died.

Goodbye Aimee 

Aimee Starla DeVoe “Beloved Star”. You are so loved by so many. Your legacy will last for generations to come. I am so proud to be your dad. What a gift it has been to have been chosen to care for you. I had no idea what a gift I was given when you were born. We have fought for your life from the day you were born. I would do it all again if it meant to get to hear you laugh, hold you when you cry and have you fall asleep on my chest. 

You will be greatly missed, words cannot describe how much you will be missed. I can’t imagine what life will be like without you. You are the heart and soul of our family, the center stone that everything is built on. You have constantly reminded us of what is most important in life. Family is the most important. Being together, holding each other, supporting each other, caring for one another is the most important. 

I am so excited for you to be free. Free from this world, all the pain and sickness. It feels as though you have been trapped in this body. You have never complained but instead you found joy. Your joy is what makes me so excited for you. Each time you laughed it was a glimpse of what heaven must be like. I can only imagine what it will be like for you to walk by HIS side. 

I don’t want you to go but you must go. It is your time to shine in HIS presence. Time to be with your Father in heaven. I can’t imagine letting you go but who better to care of you than the one who created you. Lord Jesus please take care of my girl. She is so precious. We have done our very best to care for her here. 

Goodbye Aimee, I love you so much. Be free

Love your dad.

3.26.26 One Month

One month ago today Ed and I met with Aimee’s Pulmonologist and the hospice nurse together. It was her 17th birthday and we learned that the trach cultures showed resistance to all the different combinations of antibiotics. We had to decide that day if we stop treatment or try one last combination that had a possibility of knocking down symptoms for a time. We were so grateful not to have to choose the end of treatment on her birthday. We have been so grateful for the many moments made possible by that choice. It did not eliminate symptoms, but it did hold them off from progressing for several days. 

When the hospice team walked in this afternoon, there was immediate comment that Aimee looked different than yesterday. That something has shifted. It is true. Her eyes and cheeks have sunken and her color has changed. The air around her is still. Now Aimee is a shadow. Each day we remove or pull back from cares that we have done for years to keep her comfortable and healthy. Now those same tubes or same routines cause distress and pain. One by one each day we remove them or discontinue them. The guilt and hopelessness is lurking near. We frequently remind each other of what is true and where our hope is found. Every moment goodness and mercy follow us. 

Aimee has had a beautiful life. Her story is beautiful. And it lives on in the shape of each of our hearts. 

3.24.26 Darkest Valley

 “Even when I walk through the darkest valley, I will not be afraid, for you are close beside me.” Psalms 23:4

This valley that we are walking through beside Aimee, though it is heavy with sadness and looming death, it is also a place of peaceful presence. Somehow peace can exist at the same moment as a torn heart. 

Aimee’s TPN pump ran for the last time last night and today we switch to IV morphine. In fact, as I type, the pump is running its final minutes. There is a backorder of enteral liquid morphine and we have used all that the hospice pharmacy had on their shelves. The fentanyl patches have also been behind on order. The timing does work out as we were nearing the step of switching anyways. She had gone up on her morphine use to nearly 10x what she started with for pain and just yesterday we had to increase again. Plus, we have already been lowering her TPN volume this past week, because Aimee had started to swell uncomfortably as her body’s processes have slowed. It had gradually been reduced til she was only on 4 hours of volume instead of 18. Seeing her more comfortable with less fluids has been a relief. So between the discomfort of giving her fluids and the need for more pain medication this makes sense for Aimee. 

Yet, turning off TPN fully is the most gut wrenching step we have taken thus far. I have fought so hard since the very day Aimee was born to feed her. Every day of her life it has been a struggle to get her enough nourishment. After giving up breastfeeding her, then feeding her by mouth at all, then feeding her stomach, feeding her intestinally, we now must give up feeding her at all by turning off the IV pump. My mother heart wants to nourish my girl and yet loving her is taking it away. This grief is heavy like thick mud pulling us down. Oh precious girl. How I long to gather you up in my arms and run with you from this journey. 

But she must walk through this valley. And so will we, right beside her, as far as we can, until she reaches the pure, good light that will nourish her far more than we ever could. 

3.19.26 Balm

Aimee is here with us in body, but her presence is already being missed. It is Thursday night and I haven’t seen her awake since a short 15 minute period on Monday morning. Since then she has become less and less responsive. She has also had more pain and agitation requiring more management. 

It has been a slow walking forward with her. Yet each day there are changes. We connect with the hospice nurse multiple times a day. Most days we have a home visit with her and a fellow from Children’s. We’re trying to help Aimee be comfortable as much as we can. It is a hard place for us to be. We don’t feel that we will ever be ready to say goodbye, but also wishing for her sake that she will be able to complete her journey soon.

One major heart balm has been hearing memories, seeing pictures/videos, and learning of how Aimee has impacted those around her. I love that she has been able to hear so many different loved voices and messages around her daily. She is loved. Lovely and loved and worth every single beautifully heartbreaking moment. What a journey this dear girl has been on throughout her life. What a precious gift of starlight that she has shined upon us all. 

3.13.26 Update

Despite using 17+ year old archaic technology for this communication, I have found a way to post photos again! :) Here are a couple from this past 2 weeks. 

Today was day 28 of the multitude of antibiotics. The final day. When I wrote several days ago, it felt like we had to choose the path for Aimee so that she could have the least amount of pain, the most peaceful death. However, even while on these antibiotics, Aimee has been worn down by the infection. She has used all of herself to be present. She has had increasing pain, particularly this past couple of days. There really is no other path forward except to try to keep her comfortable. Pain meds have all been more than doubled and a new one was added on top this afternoon. Still she has struggled to rest well. She doesn't seem to tolerate being moved much anymore and we have had to decide to no longer take her out to the bed in the living room for family time. I'm glad that we did our best to enjoy her calm, happy days. 

We don't know what comes next, but we are doing our best to keep her comfortable as this progresses. It is heartbreaking. She is the centerpiece of our family, the first of our children. The rhythm of our home is set to her beat. As she moves forward in her journey, so must we. We are forever changed. It is hard to imagine life without her presence here with us. While all of the care has been heavy, the daughter is always beloved. 

Thank you to all for your visits, your texts, and your meals. Thank you to each loved one who has stood around Aimee's bed and talked about wonderful memories from her life. We feel seen and loved.