“So we got the results of the CT. It is not good news,” she said bluntly.
I braced myself for what was coming next.
“It appears the swelling has increased significantly. There are many areas of the brain that are now dead. It also appears she has had several ischemic strokes,” she said.
Ischemic strokes. The same exact stroke her daddy had suffered. Just one of those strokes had rendered him paralyzed completely on one side of his body. She hadn’t just had one stroke—she’d had several. The pain was so real I felt like I was being stabbed in the chest.
“What are your expectations for Ellis if she comes off the vent?” she asked.
My mind was a mess, my thoughts incoherent.
“I…I, well, I don’t know,” I stammered, at a loss.
“Well, I will tell you what my expectations are,” she offered. “If she is ever able to come off the vent, she will never be as she was. She will most likely be in a vegetative state, not able to give or receive affection. Basic function such as walking, talking, et cetera, she will never be able to do. It might be best to start to consider your options,” she said, delivering the final blow.
I sat there in total shock, trying desperately to even form a sentence.
“Okay,” was all I could muster.
“Do you have any questions for me?” she asked.
“No. No, I don’t,” I responded.
“If you change your mind, please feel free to have your nurse come get me,” she finished.
She left the room, and I started to slowly unravel. There was no more hope for my baby girl. She was dying. Unless God radically intervened, she was going to die. I had just said good-bye to my husband. Now I was going to have to say good-bye to her, too? Two funerals in less than two years? It was inconceivable.
I lay down on my bed and curled into the tightest ball I possibly could and started to sob. I couldn’t stop. Every emotion, every fear, every bit of anger was coming to the surface. Every ounce of what I had held inside for the last sixteen months was pouring out in the rawest form during this time at the hospital.
My girlfriend came in for a visit and found me in that state. I was crying so hard I couldn’t even talk to her. She sat on my bed rubbing my back as the sobs came harder and harder. I pulled the sheets over my head, trying, in vain, to give myself some privacy from the medical staff coming in and out of the room.
No, no, no, no, no. I can’t lose her, I thought. Please, God, don’t let her go. I just got her. I don’t want her to go. No, no, no, no. Please. Please.
The room started to slowly fill with my closest girlfriends—each hearing about my despondency and coming to support me. Some gathered around Ellis’s bed to pray over her, and some gathered around to pray for me. Everyone seemed to sense the hole I was in, and no one tried to bring me out of it. I stayed in that place all day long. Hour upon hour I did not move from that bed. I did not eat or drink. I wept from a primal place within me. Four weeks ago this girl was in my belly. Now she was in a hospital bed dying. My arms hadn’t held my daughter for two weeks. I ached for her. I didn’t want to tell her good-bye. I wasn’t ready. This could not be reality.
I wanted to know what her laugh sounded like. I wanted to see her take her first steps. I wanted to know what color her eyes would be. I wanted to hear her say Mommy. I wanted to see what baby food she would spit out. I wanted to know what her favorite toy was. I was just at the beginning of starting to know her. How could she already leave us?
Why would God give us this miracle baby only to have her taken away? The conversation with Joel in rehab, the dream of her name, the miracle of her life, was it all for nothing? Why was He allowing this to happen? We had been through enough. None of this was making any sense. Would God save her life? Was the woman in the lobby right that this baby would be all right? It was all so hard to understand, and my head was spinning from trying. I wanted to believe, but with each moment my hope was rapidly fading.
The day wore on as I cried and prayed, cried and prayed. I begged God to save her life. Never before have I felt so broken, so desperate. I was surrounded by a crowd of people, yet never before had I felt so alone.
God, please save my baby girl. I’m not ready to let her go.
Two days later the hospital staff asked me if I had made any decisions about how I wished to proceed. By that point in time Ellis had stopped initiating breaths along with her ventilator. They had started to pull her out of some of the sedation. The seizures were now violent and visible every few minutes. Things were looking more and more dire. I didn’t know how much more I could take. I kept waiting for a turnaround or some type of miracle to take place, but it never came.
I asked them for one more test, an MRI, to get one last picture of where things stood. I told them after that I would make my final decision. They agreed and took her down for the two-hour test. An hour later two doctors appeared in her doorway, ready to discuss the results.
“It’s even worse than we originally thought,” the doctor started in.
They went on to show me the pictures and explain the damage. The showed me all the dark spots on her brain that were “dead.” They showed me the blood clots and the holes in her brain. They showed me the swelling and where the strokes had occurred. They showed me the inflammation that was still ravaging her brain.
As they spoke the tears slipped down my cheeks. I knew what this meant. I was going to have to let her go.
“I never even knew of this disease,” I told them. “I never knew it was something I would ever have to worry about.”
“Most people haven’t,” she replied.
The finality of the moment hit me hard. This was it. I had prayed for a change in her condition, and it had only weakened. My tears dried up. I was too numb to cry anymore.
“I’m sorry. I really am. I’m so sorry,” the neurologist said as she left the room.
An hour later I informed the staff of my decision. The time had come. I would remove Ellis from her vent the next morning. They asked me if I wanted the nurse to help me create some keepsakes. I said yes. I remembered my last few hours with Joel. Never had I expected to have to say good-bye. I blindly believed for a miracle up to the last second. So deeply had I believed that in many ways I regretted not savoring those final moments with him to say good-bye. I would not let that happen this time. I would spend this last night with my daughter relishing every moment.
The nurse brought in paint so we could paint her hands and toes, putting her little baby prints on a canvas. As we rolled the beige paint across her hands I was doubled over, tears pouring down my face. It was just a month ago I was delivering Ellis, and they were taking her prints for her birth certificate. How did we get here?
One by one we made canvases for family members. The nurses handed me scissors, and I cut locks of her hair, delicately placing it inside a small plastic baggie.
The only haircut she will ever receive, I thought. I steadied myself to avoid collapsing under the weight of what we were doing. Take this moment in, I thought. It is the last you will have with your daughter. I willed myself to continue.
Next she brought out a plaster mold to make for me. I took Ellis’s sweet hands and firmly pushed them in the mold. Her feet were next. As we finished, I took the mold and sat on the bed, carving her name in the plaster. Ellis Claire, it read with a little heart next to it.
I love her name so much. I will never be able to say it in present tense again, I thought in anger.
As difficult a moment as that was, I moved on, committing it all to memory, determined to save every little piece of her that I could. I had what felt like a permanent lump in my throat, my eyes hot and burning from the amount of tears I had shed. This moment felt as if it would be the death of me.
Friends came in and out that evening, some to pray for a miracle, some to tell her good-bye. At the end of the night, I went over to her bed to tell her good night as I always did. Only that night, it was to be her last nigh
t on this earth.
I leaned in to kiss her little legs, drenching them with tears in the process. I sang to her every day, and this day would be no different. I ran through all her favorites in my mind, finally settling on one I thought fit the moment the best.
“You are my sunshine, my only sunshine; you make me happy when skies are gray.”
I stopped, my voice breaking, took a deep breath, and continued on.
“You’ll never know, dear, how much I love you. Please don’t take my sunshine away.”
CHAPTER 11
Daring to Hope
My head was pounding as I lifted it from my pillow and looked around the room. I had cried and prayed most of the night. My body had finally succumbed to sleep, only to wake up an hour later as rays of sunlight pierced the room. It was the day.
Everything within me wanted to stay in bed and curl up in a ball. I didn’t want to face what I had to do. Who would? All night long I had tried to remember every sweet memory I had of my girl before she was put on the vent. I only had two weeks of them. Not nearly enough. I also tried to think of what I would do for a funeral. How do you even have a funeral for a baby? How do you make sure her life and its impact is not forgotten? How would I tell my two-year-old, who had just lost his father, that he had now lost his sister? It was beyond comprehension.
As intense as those questions were, they took a backseat to something even worse: the guilt. Guilt that this was all somehow my fault. If only I hadn’t made the choice to have Ellis, none of this would have happened. If only I had had her on a different day, maybe she wouldn’t have contracted this sickness. If only I had gotten her to the hospital a little earlier that morning, they could have maybe done more for her. On and on it went. Unrelenting.
I stumbled out of bed to the sink, splashing water on my face to try to alert my senses. I turned and walked toward the wall, doing what I had done a thousand times in the weeks before: put antibacterial gel on my hands before I touched her. Even though she had wires poking out of her entire body, she still looked beautiful as ever. In fact, after two weeks of being in the hospital, she looked like she had grown a little.
Today was my little girl’s one-month birthday. I would tell her good-bye, only thirty days after I had met her. The thought made me sick to my stomach.
I walked over to the bed and for the first time took down every rail that separated me from her. Before I had been too scared to do so, not wanting to disturb anything. Today I didn’t care. I had three hours left until we were removing her from the machine breathing life into her, and I would spend every moment as close to her as I could.
My arms couldn’t do much but touch her arm and a leg. I stroked them continually, rested my head beside her face, and told her how much I loved her. Even as I did, seizures were still shaking her entire body every few minutes. As miserable as it would be to say good-bye, I also wanted her to no longer suffer. It seemed my misery would be her gift, the gift of freedom from this painful shell of her body.
Throughout the morning everyone started to arrive. My parents would be in the room when the machines were turned off, as would Lauren and Julie, two of the same girlfriends who had been in the room when I said good-bye to Joel. Outside the PICU was more family in the waiting room and even more friends pacing the hall in prayer.
The evening before I had spoken with the medical staff and given them very clear instructions on how I wanted this to happen. I had thought long and hard about how I wished to say good-bye, and the details were important to me. First of all, I wanted to hold her skin to skin. This was the way she had entered the world, and this would be the way she would leave it. They were to unhook her from the vent, every wire, and place her directly on my chest. The only wire remaining would be a small one attached to her toe. This was so they could monitor her vitals from the desk outside the room and come in to tell us when she had passed. I wanted to sit in the rocking chair in the far corner of the room and read her first story to her. After a long debate, we took the advice of the medical staff and decided she would have one shot of morphine to help with the pain and make her passing as peaceful as possible. I hoped it would be quick, without any further suffering.
I also asked my parents to take all my belongings from the past two weeks to the car so I could leave the hospital as soon as it was all over. Soon, it would sadly all be over.
It was five minutes before the doctor was to arrive to start the process. The nurse came over and touched me on the shoulder.
“I am going to change her diaper one last time. Would you like to do it?”
I didn’t want to have any regrets, so I said yes. As I slowly unbuckled the fasteners on the old diaper, I started to double over, dissolving in tears.
You can do this. You have to do this. Be strong, I told myself.
It was a horrific moment, but if Ellis was going to be having one last anything, I wanted to be the one doing it.
It took much longer than it should have, the tears clouding my eyes as I wept through the entire process. My mind raced back to the late-night diaper changes two weeks prior. What I wouldn’t give to have every single one of those moments back.
The time finally arrived, and everyone took their place: my friends and family in the far corner across from me, praying fervently and hoping for a miracle. I ducked into the bathroom for a quick moment to put on the hospital gown I would be wearing, giving the hospital staff easy access to place Ellis on my chest.
As I was undressing, it struck me how everyone so desperately believed she would live as I was preparing to say good-bye. I wanted to be as full of faith as they were, but I no longer had it in me. I had believed so deeply for Joel’s miracle that I didn’t feel as if I savored my good-bye with him. I didn’t want that to happen with my daughter. God had many opportunities in the past two weeks to give us a miracle, and He hadn’t. I had no reason to believe it would happen now at the eleventh hour. Yet still, even as little faith as I had left, I still had that tiny mustard seed of belief He could do the impossible.
“God,” I whispered quietly in the tiny bathroom, “if there is any way, any way at all You can, please heal her. Thirty days is not enough.”
That moment revealed something deep within me, for as much as I thought my faith was all but gone, the core essence of who I was is one who still, against all odds, believed. At that point I didn’t believe He would, but I knew He could, and though I had exhausted myself in asking before, I still had to ask one last time.
I opened the bathroom door and entered the room. The doctor and nurse were surrounding Ellis’s bed waiting to begin. I took my seat in the rocking chair and waited.
It seemed as if everyone in the room was holding their breath. Thirty seconds later she was in my arms, her little warm body snuggled against my chest—my first time to hold her in weeks. No wires or cords we in our way; it felt so right, as it should have been all along. Only this would be the last time my arms would ever hold her. There were a million things I wanted to say to her in that moment, but I also knew the time would most likely be short as they had told us earlier she would most likely pass in minutes.
“Ellis, I am so, so proud of you, baby girl. You fought so hard. You are a brave little one,” I said through tears. “I want you to know that it’s okay to go. Don’t be afraid. Soon you will be with Jesus, and with your daddy. I am a little jealous.”
I stopped for a moment, and then went on, rocking her back and forth as I spoke. She was quiet and still.
“You will get to meet your sibling. I never knew if it was a little boy or a little girl. I always thought it was a boy, but today you will know. They will take good care of you until I see you again, my love.”
The words were coming out in sobbing, broken gasps, but I had to continue.
“I will miss you so much. I wish I could go with you, but I can’t. Your brother and I have to stay here a little longer. We will be there before you know it, but oh, how we will miss you,” I told her. “You are t
he most beautiful girl I have ever seen, Ellis Claire, and I am so proud to be your mommy, so proud. I love you, my sweet girl. I love you.”
I had said what I wanted to say, and now it was time to read to her. I quickly grabbed the book, wanting to dive in before she took her last breath, which felt like it could come at any moment. The book I had chosen was On the Night You Were Born by Nancy Tillman. This was the same poignant book Milo and I read together the night before her arrival. Those were simple times of eager anticipation of what was to be. How would I have ever known it would come to this?
I opened the book and began, the first and last book I would ever read to my child. I read each line of the book as if it were written especially for her. In that moment it felt as if it was. For her birth had changed our lives forever, and her death would do the same.
As I finished the story, it happened. She let out a loud cry. I gasped. I didn’t think I would ever hear her voice again. It seemed like a gift, the chance to hear it one last time. I pulled her in and held her even closer, wanting her to feel every bit of love and security my arms could provide.
I rocked her back and forth, talking to her, singing to her, trying to commit each moment to memory. The rest of the room was silent the entire time, each in his or her own thoughts and headspace.
She was so still and hadn’t seized once. I kept waiting to feel the shift in the room when her spirit left her body, as I had with her father. I had no idea how much time had passed, but it began to seem like it had been a lot, certainly not just minutes. If she had passed away I didnt feel it happen, but I also wasn’t feeling much movement that indicated she was still with us, either.
I looked over at my dad and called him to my side.
“Dad, would you please go out to the desk where they are monitoring her and tell me if she has passed?” I asked.
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