Just a note, after I finished writing I realized it may be too graphic for some to read. I didn’t go into much depth but I talk about images of Ariella in the ICU. If that’s too much for you I advise you to skip to the last paragraph.
Sleep. Sleep continues to be elusive. Once I fell asleep last night I mostly stayed asleep but it took a very long time for me to fall asleep and I was up early. I have a reel of images running through my head and I can’t turn them off. These images mostly attack at night, though I do get flashbacks of them throughout the day. All images of Ariella in the PICU. Shattering images of her scared eyes when they were prepping to intubate her. Crushing images of her with her sad eyes and miming that she wanted to drink. Devastating images of her writing on her white board “What if I die?” and “I want to die. This is horrible. I might as well be dead.” Asking “am I getting worse?” Heartbreaking images of Ariella on her side when they were cleaning her, in obvious discomfort and a tear dropping from her eye. Distressing images of Ariella practically lifeless in bed, barely opening an eye even when being poked and prodded and moved around. These images do not leave me. I feel such anguish that this is how she spent the last two months of her life, mostly awake and aware. She wasn’t in pain but she was extremely uncomfortable and miserable.
Also very sad to remember are the few positive moments we had in the ICU because at the time, they were positive. Ariella being so excited for a taste of popsicle and Rita’s that she wanted me to tell everyone about it. Ariella being so excited for her tracheostomy surgery because it would mean the tube would be out of her mouth and she would be able to drink and talk. That was another milestone she wanted me to share with everyone because she was so happy about it. When Ariella woke up after her surgery she gave me a big smile when she realized the tube was out. We all thought that was going to be the turning point to get her out of the ICU. We had talked about what Ariella should get following her hospital stay as she deserved something big. And she said, well wrote, “how about new shoes?” All the hell she went through and was going through and she asked for shoes. Broke my heart. The last thing she had looked forward to was finally getting water. She was able to get just 5mL at a time about 3 times a day to start but boy was she happy to get just that. That’s how horrific it all was, that drops of water and tastes of a popsicle could bring that much joy. She had everything all planned out once she got out of the ICU. A big glass of water in the purple cup she won playing bingo, milk, Rita’s, and a shower. And then a big steak dinner when she finally got out of the hospital. None of those dreams were realized. She was on the schedule to have a swallow study completed but it never happened because she took a turn for the worse. After that she never fully recovered. The only comfort I take from this is that she was sedated near the end so no longer uncomfortable and scared.
To contradict myself now, I am glad Ariella was sedated for her sake but I regret not having the death talk with her. When she asked earlier in her stay “what if I die?” everyone thought she would recover and come off the vent, her lungs just needed more time. We did not promise her she wouldn’t die but we did say the doctors were doing everything they could to prevent that. When it became apparent that there was a good chance Ariella wasn’t coming home with us she was mostly sleeping so we never got to talk to her about how she was feeling about dying. By then was she scared to die? Or was she ready to die? What did she think would happen once she died? Where did she think she would go? What, if anything was she worried about? We have talked about death before and what happens after someone dies and Ariella believed in Heaven so I just hope with all my being that by then she was no longer scared to die and was ready to go. Because it kills me to think she might have been scared about dying near the end but didn’t tell us.
I started this post about sleep. This lack of sleep along with the grief is leaving me in what I would call a fog. Concentrating on anything for longer than a few minutes is impossible. I get distracted so easily but usually not by anything, I just end up staring into space. I am extremely forgetful and am having trouble just getting through routine tasks from start to finish. I find myself frequently losing my train of thought when in conversation. I wasn’t going to write today but I know if I don’t have something to do I will fall asleep and I am worried that a nap will make it even harder for me to sleep tonight. But maybe I should take sleep when I can.
Thank you for sharing
Oh Erica. My heart aches for you. I want to reach out and hug you and make everything okay. If only…
Ariella was lucky to have you and David with her when she was scared, when she was hurting, when she could have those few sips of water.
Take sleep when you can. It will help clear some of the fog and make you feel better physically. Thinking of you often.
Thank you for sharing your grief. Grieving can be a very lonely journey and when you realize others have walked a similar road, it helps. You are not alone.
After my loss, I was haunted by the decisions I had made, the ones I hadn’t made, and the questions I should have asked but didn’t. Guilt was one of the byproducts during my immediate grieving period.
I am truly so sorry for your loss. Although I never had the pleasure of meeting your daughter, she was clearly a beautiful soul and a treasure.
Erica,
Nature dealt your family a very tough hand. But you, David, and Ariella played it as well as anyone could have, despite the outcome. Ariella’s painful condition was one thing. But your attention and presence relieved her of even worse pain. That would be the suffering from the unknown. I’m sure she knew you and David were working with all your power. That must have brought her relief and comfort when she was not able to understand the why’s and what’s next. I’m also sure she is eternally grateful to you both for helping her through the last stages here and into what follows. As I’m also sure she’s grateful for your letters and thoughts for her now.
Erica, Your words always make me cry. I love you so much and I am so sorry. Ariella was blessed to have you and David as parents, as you were blessed having her for a daughter. 💔
This breaks my heart. I miss her so much
I’m so sorry you have memories that bring you pain but just remember God makes no mistakes! You and the doctors did the best you knew how. God was ready for His angel.
Praying for your comfort and strength .
My heart is breaking as well. My husband just recently went thru so much of the same things. No water or food for five minutes. Trach for three. The day we said goodbye to him we gave him a Rita’s ice on his lips. He died with a smile on his face. We never had the death talk either. We always thought he would live. Then within 12 hours of being somewhat alert he was gone.
My daughter Jessica passed while having open heart surgery. It was her 2nd surgery. She was 20 months old. It was 34 years ago. The social worker at the hospital send me a book, On Children and Death by Elizabeth Kubler Ross. The book gives examples of how children know and I too had an experience with her just like those examples in the book. It is an excellent book and made me feel so much better about what happened and that Jessica knew it was going to happen and was fine. In that I have no doubt. Praying you’ll get some peace and decent sleep soon.
Thank you. I will definitely check that book out.
I began following a few months back when Ariella was living this nightmare in the ICU. I came upon your family’s story through a friend of a friend in the Ewing’s community. I’ve wanted to write earlier and I had no words that could possibly provide comfort. To read your words show just how much love and bravery you had during her treatments and will have forever. I am simply amazed at what an amazing brave person you are. And it definitely showed in your daughter too. I believe that in any moments of suffering she was overcome by peace and love that you and her father have showed her entire life, and a God Bigger than we can imagine comforted her at every step. If there is anything I can say, it’s that because of your bravery sharing Ariella’s Story, people learn how absolutely horrible pediatric cancer treatments are. In 2011 another warrior mom across the country from me was sharing her son’s story. It was horrific. It was real and I couldn’t turn way. Once I heard the realities of what these kids go through, I said I have to help. I have to spread the message so better cures are found. That family started a foundation to fund pediatric cancer research and I’ve been involved ever since. I say this so you know that there are people just like me across the globe who will read these words, who will be heartbroken alongside you at how unjust and unfair pediatric cancer is, and they won’t turn away. They will help fund research, or help patients and families in need. I believe once you see it, you hear it, or you live it, you can’t turn away. And so your words, Ariella’s life, her journey, they will teach others how to help and change the face of pediatric cancer. God bless you, your daughter, and all of those who will forever love her so deeply. You are one amazing mom. I can’t imagine the hole in your heart right now. Just know people everywhere are heartbroken alongside you. ❤️
Thank you