Last night I dreamt of you Archer. You were standing in the hallway under all the kid’s baby pictures and said “Hi mom.” I ran to you, dropped to the floor and you wrapped your arms around my neck. We remained on the floor while you hugged me. I have been begging for a dream of you Archer, to know that you are ok, that you are happy, and that you are right where you are supposed to be. You were wearing the same outfit, no backpack, as you were in my dream on January 12th, 2022, the night before your earthly body gave up on you. In that dream, you wrapped your beautiful arms around my neck and held on tight, just like you’ve always done with your hugs. When you visited me on the 12th I was attempting to sleep in the hospital recliner behind your bed while your nurse and ECMO specialist tenderly cared for you. You came to me that night buddy, during one of my darkest times. Archer your hugs have always been so genuine and sincere. I miss your hugs so much. Thank you for visiting me baby. I asked Brandt to be sure to tell me when he dreams of Archer and to take note of his clothing. I stashed these clothes away at home. I will keep my secret of this outfit until I hear another’s dream.
Monday, January 10th, brought on a day of doubt. We met a new nurse this day, Kay. Initially, I wasn’t certain we would have much to discuss. It wasn’t until later in the day, when another nurse covered her lunch break, that I learned Kay was an angel of a nurse sent directly to us. I learned Kay was a woman of faith. I felt comfortable starting to read my new book out loud to Archer while holding his hand, knowing that whoever is listening may benefit from the book as well.
This is the day I was able to sneak in a “chaplain friend.” My dear friend Amanda, who I’d known little about, just that she was an influential person and a powerful person to have on our side. She reached out to me. Having exchanged few conversations, she knew where she needed to be and who she needed to pray for. With strategic planning, we were allowed 2 minutes with her to pray together at Archer’s bedside. The strength that radiated off of her enveloped us all in comfort. We prayed together, for each other, for Archer, for the medical, staff, everyone. We were tucked in Archer’s small room with a prevailing prayer that resonating in each of us. Comfort doesn’t begin to describe how I felt during this time. Supportive doesn’t touch it either. Potentially I could compare it too overwhelming peace. Both Brandt and I were growing stronger in our faith because of Archer. All of the different tests and scans brought us both to prayer. Amanda, told us, "The Lord is present here, I can feel it."
The Saturday after Archer coded we asked everyone to rejoice together in their 8:30am prayer. I wanted the lord to hear our prayers in unity. Little by little our prayers were getting answered despite the hurt that kept coming after every CT. We chose to trust the plan, but I didn’t want to. I resisted tremendously. I pressed on wanting the miracle Archer needed. Surely, he will come to rescue him. God of miracles come; we need your supernatural love. The song I found and rejoiced in, God of miracles by Chris McClarney, played in my head over and over, it made my heartbeat. It made me wake in the morning to a new day after little sleep and brought my legs to form steps underneath me. It brought spiritual wellness for me. It helped me face another day that was likely going to continue down the path we dreaded.
The CT done this Monday morning was, again, devastating. I was originally excited for a Monday. Thinking we would have all the specialists we needed on a Monday because weekends tend to be quieter. As they took Archer away, I listened to the song and thought to myself, this CT, this is it Lord, this is the one that is going to change the plan and tell us what we’ve been longing to hear. This is the time. I am right here, waiting for you, and I need your supernatural healing now! Anyone passing by this room with no patient in it may have thought they had seen a grieving mother. I was not grieving at this time. Fearful yes, but not grieving.
Archer came back from CT and we patiently waited for the doctor to come around and give us the report. The report that I was anxiously waiting for. He hadn’t had any seizures all weekend but his pupils hadn’t changed either. They were still lifeless, nonreactive and unequal. Four doctors stood outside Archer’s room and asked us to come with them to a conference room. Brandt and I both knew this wasn’t going to be good. We’ve never been asked to leave his room until now. The walk took forever, past all of the other patient’s rooms with thriving adults and children. At that time, I dreaded seeing other children walking in the hallways. I wouldn’t say I despised them, but the thought did cross my mind. How can you cheer on your child and hide stickers for them in the hallways while my child is in here, in this room, unable to walk, unable to communicate, and unable to enjoy the simple pleasures of finding stickers hidden by the nurses in the hallways? How dare you flaunt your able-bodied child in front of me! I never expressed this until now. Allowing myself to release that awful thought feels good. Now I love those children. They were making tremendous strides every day and I'm so happy the staff brought small pleasures to their difficult obstacles.
We get into the room, Brandt to my left, nurse practitioner to his left, doctor in the front to the left, neurologist and his resident to my right. We stare at a large projected screen with my sons brain pictured at different angles. They proceed with telling us again, “This is not the news we had hoped for.” We were already prepared to be crushed because of the walk to the room. He said that and I thought, absolutely not, this is supposed to be the turning point I’ve been begging for! They went through the findings, telling us the swelling has increased despite the efforts to decrease it. The cerebral hemorrhage was so severe and the damage was in different parts of his brain, also revealing a stroke that he suffered in the left hemisphere near the basal ganglia in his brain. They proceeded to tell us Archer would be left with debilitating disabilities because of the severe damage that occurred in his brain. Debilitating disabilities did not scare me. I understood that, I’ve worked with that and I’ve helped other parents understand that. As much as I thought I was prepared for debilitating disabilities I think Brandt was more prepared in knowing what he didn’t want to see Archer go through than I was. I told him, my family, and friends that debilitating disabilities require extensive therapy and that is manageable. Recovery from therapies is unpredictable, but it is manageable. The doctors then asked us if we would like to continue treatment knowing he would have such severe disabilities or if we would like to withdraw from life support.
There it is, the question I never thought we would ever hear. This question is unspeakable, and now you're asking us to speak it, decide on it, and get back to you with an answer? Hell no. We won’t give up on our child. Not before we’ve even given him a chance to wake up! How can we be certain what his disabilities are going to be if we won’t even let him attempt to wake up? I say Brandt was maybe more prepared because my mind was already racing with who I would want for his durable medical equipment company. I ensured Brandt, even if he does need a trach and vent, kids come can come off of that. I joined the support groups on facebook for parents of children with hypoxic brain injuries. I contacted Levi’s mom who I have followed since Levi and his sister had a terrible accident. I knew she could provide me with expertise on children with hypoxic brain injuries. I researched hyperbaric oxygen chambers and started to calculate costs to establish care and figure out where we could put one in our home. I knew that hyperbaric oxygen chambers can stimulate neuron regeneration and aide in healing his brain by developing new pathways, pathways around the damaged brain, in order to relearn tasks that he had once known. I researched and learned that the best specialist to initiate hyperbaric oxygen chamber treatments is in Arizona. I mentally started thinking of what it would take to get him to Arizona, knowing he will have a lot of supplies. Brandt and I would, again, divide and conquer to care for our unique family. Like I said, Brandt was likely more realistic, but I wasn’t ready to take no for answer. I don’t give up easily and the word no doesn’t scare me. I started to prepare him and I for the fight of our lives that we never saw coming. Knowing everything we knew about our kids, we never anticipated something like this happening. That was just the scary stuff you read about in articles. This isn’t going to happen to us because we’ve done so well. We’ve advocated for our kids so diligently throughout the years. We have always been on top of it. There’s no way that’s going to happen to us. Brandt’s thoughts for this were, “I don’t want my son to live as a vegetable.” A persistent vegetative state is a medical term for what he was trying to describe and I just pushed forward with my adapting capabilities. I wouldn’t say I was being unrealistic, I would say I was being hopeful because I have seen and cared for children with serious complications.
The rest of our day was spent with Archer, loving on him, reading to him, and praying with him. We seldom spoke to the rest of our children, fearing they might hear our emotions in our voices. It was hard to hold back information from them. We’ve always been so honest and straightforward. We’ve operated under the thought that, “I’ll be open and honest with you forever and you’ll be open and honest with us.” We’ve also educated them on medical lingo so they could understand what we said. We’ve read body books together and explained all their questions about what makes our family different than others. It killed me not to share with them the grim details of Archer’s wellbeing. I hated it. There’s a certain point that a parent will reach when they realize they need to protect their children’s young and impressionable minds. We reached that point on Monday. Up until then they knew Archer coded and his body was being kept asleep to recover. I now know that my struggle between honesty and realism wasn't my struggle alone. I was never alone.
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