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. 

3.8.26 Considering a Good Death

What is a good death?

Non-traumatic. Peaceful. Pain free. At home. Surrounded by those who love you most. Calm. Spiritual. 

Can it be beautiful?

Can it be sweet and lovely? Can we be deeply present for it?

We have considered and discussed over these past few weeks. Aimee is on day 9 of this combination of 5 different antibiotics, which follows after a 14 day cycle of a different combination of 4. It is not a cure. She has been mostly sleeping, though sweetly happy. She has bursts of wakefulness followed by deep rest. It has been quite beautiful how intentional she is being with her energy, more than I imagined that she could be. She chooses to be present for key moments and connections. She is giving us little knowing grins and lots of hand squeezes. 

Ed and I have come together to a place of peace. Maybe not peace completely, but a place of certainty, of a light guiding the next footfall. Once this 14 day course of antibiotics is completed, we will not continue forward on further antibiotics. They have been an amazing tool that have given us 4 years together at home. Her doctors have so trusted us with treating her here and given us every massive antibiotic and tool that could possibly work. We have had our own ICU here in Aimee’s room and truly believe our decision to treat her at home has saved her life countless times. There are no more tools. Of what her cultures are growing now, 3 of the strains are not treatable by any combination of antibiotics. We can knock down the symptoms for a time, but we believe that if we continue to struggle and hold on while these “machines” (as Louisa has called the bacteria) become more aggressive through her body, that it will mean a more difficult death. If her intestines shut down first it will be much more painful. If her pulmonary symptoms develop to greater intensity, it will be much more traumatic. Sepsis could be a more good death. 

I never would have considered those words to belong together. Yet, as we prepare ourselves, this process has echos of preparing for birth. It is inevitable. We cannot control the timing. There are signs that it is drawing nearer. It has anxiety and even some fear. And yet, we believe that on the other side of the pain there is the beauty of new life and the hope of a greater love than we ever before imagined. 

After our discussions with Pulmonary and hospice, we have come to realize that it is now time to open our hands and to let Aimee decide when to fly from this beautiful, broken cage of a body. We are transitioning our focus from treatment to savoring her presence and maintaining her comfort. As a family we are trying to be fully present here during this time with her while we also look forward with hope towards an eternal future. 

2.26.26 Young and Sweet Only 17

Dear friends,

Today is Aimee’s 17th birthday. We have enjoyed a sweet day focusing on celebrating her. 

Yet, I come here tonight to share difficult news. 2 weeks ago, Aimee started to go into sepsis. With the help of 3 big gun IV antibiotics, she has slowly been climbing back out of the depths of an unresponsive, coma to again being responsive. Albeit she is still very exhausted and still showing infection signs. She has very minimal amount of awake and present time. 

Unfortunately, after using several different heavy-duty antibiotics over and over this past few years, she has reached a point where there are no more good options available to treat her reoccurring infections. For the moment she has been stabilized, but she has not come near to her baseline. She is exhausted. We brought in a new sample to be cultured and 3 of the bacteria that she is growing are essentially super bugs, multi-drug resistant, and impossible to eradicate. Today Ed and I met with her Pulmonologist and her palliative/hospice nurse. Tomorrow is the last day of this 14 day course of antibiotics. There is one more combination of antibiotics that we can try, but it is not a big hope that it will work. More of a last effort that we have to try just in case it will buy her more good days for a bit longer. It is only a matter of how much time. Our hope at this point is to knock down the bacteria so that she can have the energy to be awake and be present again. Ultimately, it is up to Aimee and how long she wants to fight. 

Aimee has worked so hard to be here and we’ve done our best to give her every weapon. She is a champion and we are proud of her. We love her sweet, knowing smiles, her firm handholds, and her calm presence. We love her so much that we are also figuring out how we can let her go. How very grateful I am to not be walking this road alone. We are walking it together as a family with Aimee until she is ready to fly free.