Some moments, I wonder if it was all a dream.

After her body was taken to Mount Olivet to be cared for. After all the medical equipment was picked up. After our room was cleaned up and medications thrown away. All that remains now in our room where she died is the little crib we borrowed, draped with a special blanket embroidered with her name, and the little tool drawers I bought to hold her medical supplies. 

I definitely thought we’d have more time with her at home. 

Sometimes letting go is an act of love itself. While medications keep her functional and alive, it was hard to see her moments of suffering and discomfort. Thankfully, she slept through a lot of it. Her happiest moments were in our arms. But the mask that kept her breathing was hard on her. It left indents on her nose and it was uncomfortable for her. Without it she would slowly suffocate, unable to pull in the air she needs. Many times she clawed at it, almost asking us to take it off.

Before we took her home, the doctors told us it could range from hours to weeks for her PDA vessel to close – in normal babies this is supposed to close shortly after birth. In HLHS babies like Dolores, it has to be kept open for them to make it to the surgery. The last IV medication she received was the one that kept her PDA vessel open. This allowed her oxygenated blood to circulate with her heart condition. We took her off that medication right before leaving the hospital. 

That first night home was hard. It was little sleep and stressful with lots of beeping and uncertainty. A lot of figuring out the medication schedule and when to give her morphine to ease her pain. That morning, Dolores gave us the first sign that her time was fast approaching. She was on a feeding tube constantly receiving Jen’s milk. But in the early hours of the morning, she threw up. 

You can imagine our panic as we tried to remember what to do next. How to help her. No more nurses a few feet away to take over. We immediately called hospice and asked for help. With some morphine, things settled for her and a nurse would be there soon. I’m grateful for that because I had to get the kids to school - Ellie’s first day. I didn’t want to leave Jen alone and God brought a nurse to be with her while I was gone. 

Her vomiting was the sign that her kidneys and other organs were shutting down and unable to process food. Another step of letting go. We slowly watched her arms and legs lose color over the next day. Our bodies are so intelligently designed in this way, working from the outside in, shutting down less essential organs until finally the most important ones are left. 

Her last night was peaceful. We knew when to give her morphine to ease her pain. And most importantly, we laid her in our bed with us so that she could stay close to us throughout the night. 

Dolores let us know it was her time. Jen had a neighborhood friend with her (who also happens to be a pediatrician) so she wouldn’t be by herself while I dropped the kids off at school. As she walked her to the door to leave, they both heard Dolores cry out for Jen – a loud, clear cry that sounded like she had no mask on. It was a sound Jen had never heard before. It was her way of saying, “Mom, I need you.”

Dolores had a schedule, and she planned it well. She waited until both kids would be out of the house at school. 

That morning, Ellie gave Dolores a beautiful goodbye before she left for school. She gave me enough time to drop the kids at school and be home to say goodbye. She gave us time to hold her and love her with no mask or tube in her nose as she took her last breath. Time for us to grieve and hold her tight after she passed. Time for her to be taken to the mortuary before the kids came home.   

One of the hardest parts was breaking the news to our daughter. At five, she understood better. David isn’t quite old enough to grasp what was happening. Ellie was devastated. She was so excited to have a little sister. Jen did such a good job walking her through her grief and emotions. Explaining to her that she is in Jesus’ arms and that she is fully healed. No more ‘owies’ in heaven. Ellie took this so well. Starting a new school a day before made me worried it would be too much for her. But God’s grace flowed through, and she is doing extremely well a week later. She loves revisiting pictures of her little sister.

We took the next day as a family just being together and celebrating Dolores’ life. We took our time, went to the park, got ice cream, and more. It was a beautiful day of healing. 

God has given us so much grace this past week. It’s hard to explain, but I’m not overwhelmed by grief – Jen feels similarly. I have moments where I need to weep, moments I remember her and miss her dearly. But we aren’t paralyzed by it. We feel called to share openly in our hurts and joy of our daughter’s life. We still have daily life caring for our kids, planning for a funeral, figuring out insurance and medical, etc. But through it all, we have peace. 

Thank you to all those who have cared for us, sent us flowers or care packages, prayed for us, and supported us in so many ways. It has been such a gift to have so many walk alongside us and it’s made this all so much easier. We’ve received support in so many ways we did not expect. God truly is with us and working through so many people. 

Currently, we are planning and preparing for Dolores’ funeral. In a way, there is a joy in creating things to celebrate her life. Choosing music, symbolism, images, and other creative ways to honor her life. Her life was so precious to us – a gift to be shared and honored. That’s part of why I created this website. I want to continue to honor her and share our story. Who knows what God has in store with it. All I know is that God moved me to do so, and I’m just following his nudges. 

That’s one of many gifts that Dolores gave to me. To better feel His nudges. To better listen to God moving in my life. Dolores has been working alongside me in spirit this past week, forevermore near my heart. She’s been moving and nudging my heart to remember many things I’ve forgotten about myself. And pushing me in ways I’ve not had the courage to do thus far. 

I hope to create many things in the future with my Dolores. Just not in the way I ever expected. Sometimes life has a way of smothering the beauty of your spirit. Teaching you to hide or run from what God created you to be.    

Thank you Dolores, for teaching my heart to be open and vulnerable again. Even though it’s painful, I’ve received so many more graces than I imagined. I miss you, and love you – my Prayer Warrior Princess.