How it happened

Trigger warning: This post will contain some very personal details of the death of a child. If you can not handle reading this, please don't.

The day was July 14, 2016. Millie was fading fast. Earlier in the week, she had crashed hard. Monday night into Tuesday morning she spent most of the night being suctioned or crying. No matter what we did, nothing seemed to help. Justin was up with her most of the night. I was only able to stay awake for short periods. We called hospice in the morning to ask for some backup. Both of us were absolutely spent. We knew that Millie was getting close to leaving us. Tuesday Justin had stayed home from work and we had some family time. By Wednesday, after an increase in Morphine she seemed to rally a bit. Thursday morning was different. Millie was peaceful, but there was a constant blue coloring to her skin.

My therapist came that day. So had my mother and sister. I remember telling my mother that if Cynthia (my sister) wanted to see Amelia alive, she needed to come soon. When my therapist came to the house, mom and Cynthia said that they would take Millie with them on a walk. She loved walks. But I knew that I needed to hold her. So they went without her. I just couldn't let her go.

After mom and Cynthia left, our hospice volunteer Donna came too. We both spent time loving on Millie. The visits were usually about two hours, and Donna (bless her heart), would help with whatever I asked her to. She would do dishes, or just be there to talk. By the time she left at 5:00 PM, things began to change. Millie was swollen. And she just wouldn't wake up. I smelled her breath, and much to my despair, I detected a fruity smell. My worst fears were realized; the end was near.

I called hospice. The nurse on the phone was one that had only made a visit once. She had been there earlier in the day. I told her what I was seeing. She replied, "I don't know what you want me to do. We don't think Amelia is going to make it through the weekend." I told her that I felt that things were changing. She said, "I can bring you a pop, but beyond that I don't know what to do. Why don't you call and have a friend sit with you?"

I was angry. Here was this nurse who was trained, and being paid to come to our aide. And she was denying me. My daughter was dying and she wasn't going to come. I called my friend Laura, who agreed to come right away to sit with us. While waiting for Laura to arrive, I called Justin, who had decided to return to work since Millie had rallied the previous day. "Justin, you need to come home now. Her breath is fruity and she isn't waking up." He knew that as a long term care nurse, I had seen my fair share of this. Fruity breath, swelling, and being unable to wake up are all signs of death as a result of multi-system organ failure. Amelia's respiratory failure was beginning to take over and her body was shutting down. Justin said he would finish what he needed to at work and be home as soon as he could.

Laura arrived shortly after. We took turns holding her, and when Justin got home, he held her too. I remember taking pictures of her. Of Justin holding her in the blanket we received from Cure SMA,  especially. Laura held me while I silently cried, knowing my baby girl wouldn't be here long. She left after a couple of hours.

I then called my friend Sean, who is very much like a big brother to me and was Amelia's godfather. I told him that Millie was getting close to dying, and asked if he would like to come and spend some time with us. He readily agreed. We all prayed the Rosary together, and after Sean left, Justin and I set up our bed in the living room and decided to try to sleep. I put Millie on her sheepskin blanket and positioned her with her Boppy pillow. The night drip was running. We covered her up. I asked Justin if we could have her in bed with us. Justin said "I'm really tired, we should probably just have her lie on her little bed on the floor." I turned off the light, but I just couldn't sleep. I just felt like I needed to see Millie. When I looked over, she was taking her last breath. I quickly woke up Justin, turned on the light, and looking at her again, I knew she was gone.

"She's gone, baby." I said. "No she isn't! She's still breathing." he said. But whatever color was left was gone from her face, and her face was so swollen I couldn't even tell it was her. My baby had died. I looked at the time. 12:52 AM. Justin finally realized she was gone. The audible sobs were heartwrenching. I turned off the feeding. I turned off her oxygen. I sat for a moment wondering what the hell had happened. Was this really my life? Was she really gone?

But she was. I called the hospice nurse again. She didn't answer. Now I was really angry. I couldn't believe the nurse that had been so unhelpful was now not answering at the worst moment of my life. So I called our Palliative care doctor. "She's gone." was all I could manage. Before he could get more words out, hospice was on the other line. I told him I would call him back.

When the nurse answered, I told her, "she's gone." I was sobbing, hyperventilating. I couldn't believe how this nurse had neglected us in our time of need. "Samantha, you need to calm down." she said. I was fuming. "It's going to take me about an hour and a half to two hours to get to you. I will be on my way soon."

Great. So now what? I called Sean again. "Sean, she's gone." I said. His only reply was "really?!" I asked if he would come and sit with us, and he agreed. I sat there, in a silent house, looking at my daughter's lifeless body and I just couldn't do anything but stare. All of my training, all of my experiences and I felt grossly unprepared. I couldn't touch her. That was not my baby.

Sean finally held her. He rocked her gently. I saw all the love he held for our precious girl and finally I could hold her too. When the hospice nurse finally arrived, she said "Can I get her changed for the funeral home?" All I could do was nod. I was numb. Looking back, I wanted to be the one to give her one last bath. To change her one last time. To put her in my favorite jammies of hers. But in that moment, I couldn't tell her what I needed. So I just let her do it.

"It's probably going to take the funeral home a while to get here," she said, "So I'm going to call them." She called and told them that Amelia had died. The funeral director asked about how to get the gurney into the house. The nurse replied "I don't think you understand, Amelia is only three months old." He said he would be there soon.

Justin and I took turns holding our baby girl. The funeral director arrived. I wasn't ready. I wasn't ready to let her go. He was so tender, very carefully picking up the tiny bundle that was placed on my chest just three months and ten days prior after she was born. I will never forget him looking at me and saying "you will hold her again."

After he left, the nurse was busy getting all of the medical equipment loaded up in her vehicle. She didn't ask me if I was ready. I wasn't. Before long, everything was loaded up. She then left. Sean left shortly after.

Then our house was quiet. Sickeningly quiet. The oxygen concentrator wasn't running anymore. For the last month it was a constant noise in our house. Annoying as it was, its absence made me sick to my stomach. I tried to go to sleep. All I could do was drift off here and there. Then began my new normal: living life without my daughter.