This morning on our way to drop off the girls at school, Otto eagerly said “I pulled my string, Archer’s string.” Wow, buddy, you pulled your string that is permanently attached to your brother in heaven. Otto listened to the book we read to the kids after Archer’s passing. This book leads the readers into a sense of humbleness about being alone because no matter where they are or what they are doing, they will always have their string to tug when they are missing their loved ones. I had never seen this book before until I was searching for more books to read to Archer on Wednesday, day 5 of ECMO. We breezed through my Praying Women book in 2 days. 200 pages read bedside and still counting. I searched the local bookstore inventory online and realized I wouldn’t find it in Rochester. Not during the time that I needed it in at least. That sinking feeling fueled my emotions, and another shock wave took a hold of me realizing I wouldn’t have enough time to read my son a book. A simple yet meaningful picture book. That is a heavy feeling. It made me want to curl up in the corner. The thought of this whole event being a nightmare continued to plague me. All I wanted to do was wake up. Wake up out of this horrendous nightmare. Wake me up at home with all my kids. Or at least let me go back a week and love on my son just a bit more. Please just wake me up.
The book is called The Invisible String by Patrice Karst. Child life was heavily involved with Archer’s care before and after his coding event. I had no idea they would be involved with our son in his current state. Just one week ago, child life specialists were helping us paint, providing the ingredients for slime, and allocating a PlayStation just to our room. We knew the joys that child life could bring. I thought to myself, what kind of joy can you bring me now when I can’t even interact with my son? Turns out, a lot of comfort, not joy but pure comfort. I asked child life for books to bring us, knowing my Invisible String book was out of reach. Turns out, they had one. They had one for us to keep and even offered to put Archer’s handprint in it. If you haven’t started crying yet, feel free to start now. You can imagine my shock and pleasure in getting my hands on this book to read to my son. I wanted him to know that no matter what happens, he will always be connected to us, and now my other son has benefited from this book in the same way I hoped Archer would. I cried through my words, stuttered, and stammered through the entire book. My fingers ached from trying to balance the book and hold my son’s hand. This was the last book that I read to Archer. Understandably, we barely made it through the book. I’ll never forget that moment, but that is for tomorrow.
Wednesday, Brandt and I had to sit through another CT. No surprises here, we already know. Turns out this CT showed the exact same thing as it had before. I dreaded sending Archer to CT because it was such chaos. I hated it every second he was away from me and not knowing what could happen during that time he was gone. Every time they would leave with him there would be a final check to ensure they had the rescue medications. I was briefed the night before on Archer’s eyes changing. Not the pupils but the sclera, the whites of his eyes. He had been on the ventilator for so long now that his eyes started to swell, not all of it but parts of it. Preventing his eyes from closing completely. Archer had always been the child to sleep with his eyes just barely open, that’s what he did during this time, but now they were partially open and swollen. Break my heart more, like that is even possible to disassemble my heart into smaller pieces. We decided to tape his eyelids closed so he wouldn’t have to look at the lights when they would be moving him to CT. We tried to keep a dim and quiet environment in his room as much as we could. Now, my most cherished piece of my son was unrecognizable and it looked so painful. We consulted with ophthalmology who prescribed some antibiotic ointment anticipating that all the manipulation of checking his pupils was disturbing the sclera area. Even though we were briefed on this change, it didn’t prepare us. Heart-breaking changes, deteriorating changes, and irreversible changes happening to our baby right in front of our healthy and functioning eyes.
I think this was the day that Brandt used the word helpless. What an appropriate word to use. As parents, we wake up, think of our kids, go to work, think of our kids, go to bed, and think of our kids. That is what we do. That is why we became parents. To raise a child that we would protect with every ounce of strength that we had. At this point, we felt helpless. An eight-letter word had never held so much sorrow. Nothing we had the capability of doing would help Archer. This is a disgusting feeling. It tears you up knowing the suffering is right in front of your face and yet you still cannot do anything about it! It’s not like they are suffering miles away, he was right there. With us, the entire time, suffering as we felt helpless. This is when we realized, giving up was not what we would be doing if we decided to let Archer go. There was no longer anything to give up on. He wasn’t with us anymore. Brandt and I both felt strongly that Archer left us the day he coded Friday, January 7th.
Together we decided to finally reveal the truth to our children. Honey, Archer won’t be coming home with us, he’ll be going home to heaven. Those are the words I settled on. That was how I was going to get my children to understand the severity of this situation. We told our parents first. Then we face timed the kids. Our beautiful children had ample support from family during the time they were hearing the worst news of their lives. We said the statement, held each other, and cried together. Tucked away in a small conference room, we broke our children’s hearts. It was awful. The tears stained and burned our faces more than they had ever before. Watching your own children try to grasp this difficult news was another one of the hardest moments we had ever been through. He wasn’t just our Archer to mourn over, he was everyone’s Archer. He was their best friend, their brother, their roommate, and their heart and soul. The relationship between sibling children will always be a bit of a mystery to parents. They make their own tender conversations and their own sacred secrets. Now those conversations and secrets wouldn’t happen again. They knew that now. This was final. It killed us to hear them say, “but I didn’t get to say goodbye.” No sweetie you didn’t, and I am so so terribly sorry baby. We, of course, discussed heaven being the ultimate and beautiful place for Archer to be. Together we all concluded with the excitement he must have to be running around with no struggles behind us. They still wanted to see him. Tons of people wanted to see Archer, but covid restrictions were tight. However, had covid restrictions not been tight, we didn’t want anyone to see Archer in this current state. I can’t help but think that he wouldn’t have wanted anyone to see him like this. This was the kid that wouldn’t even let mom in the bathroom if he was pooping. There is no way Archer would have wanted anyone to see him like this. I just know it.
After the conversation, we continued to grieve and love on Archer. Everybody was so kind and gentle to us. I was able to spend the night with Archer this night, and that is the night he also visited me. It was almost like he knew exactly what I needed. A hug from my children but one was here, and the rest were so far away so he came to me. Thank you so much, buddy. That was the best hug I could have asked for. When I tug on my string buddy, please tug back if your not too busy enjoying your carefree life up in the glorious and holy surroundings of our heavenly father. I love you buddy.
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