Since I couldn’t pray very well, I decided to sing “Jesus Loves Me.” I had memorized the song as a young child and had repeated it over and over during times in my life when I was in so much pain I couldn’t think straight. My voice was sputtering words between choked-back sobs. Not being able to hear probably helped Emmalynn to deal with my warbling.
Shortly after midnight I realized I had not heard Emmalynn “click” in the last minute or two. I opened my bathrobe and gently eased her away from my chest and looked down at her face. Her lips were white, and it was obvious that she was no longer with us. My stethoscope was sitting next to me on the table, and I picked it up to listen to her chest. I wanted to make sure she was indeed absent from her body.
I placed the stethoscope over her heart, but I couldn’t hear anything except the rushing of my own blood.
In that moment I began to shudder, and gasping sobs overcame me. Hearing the change in my crying, Charity got up off the couch and hurried into the dining room. Her T-shirt was rumpled and her ponytail askew.
“Is she gone?” she asked.
“I don’t know for sure; I can’t hear anything,” I said, my voice shaking.
Charity took my stethoscope and placed it on Emmalynn’s chest. “I don’t hear a heartbeat,” she said. Her eyes were red and tearful; she looked a little off balance. “What do we do now?”
And as quickly as the storm of my own weeping had come over me, it subsided.
“Go get your dad and the rest of the kids,” I said. “We’re going to be okay.”
Charity went upstairs.
During those moments, I composed myself, gathering my wits. As a mom and a hospice nurse, I knew my kids would take their emotional cues from me, and I wanted to be ready. While grief was normal and struck the heart with a solid blow, Emmalynn’s death was no reason to be filled with dread or panic. She had lived fifty days on earth. Now she would live an eternity in heaven.
My prevailing emotion was one of overwhelming gratitude that I had been able to love Emmalynn while she was passing. It was important that I had not been tense, that my heart rate had been steady. Emmalynn had not picked up any anxiety vibes from me. I had accomplished what I set out to do when she came to our home. Because of God’s grace, I was able to stay steady when it was the most needed. I had wanted her to die in my embrace, being held by someone who loved her and knew her.
Over the years, I had grieved that Amie hadn’t had human help close by when she died. That grief had motivated me to ask God for the strength and ability to do good and help others ease into the transition from this life to the next. I had helped lead Emmalynn to peace, and in the process I had discovered some of it too.
4
THE FUNERAL
To Thee, dear Lord, O Christ of God,
We sing, we ever sing;
Thou hast invaded death’s abode
And robbed him of his sting.
The house of dust enthralls no more,
For Thou, the strong to save,
Thyself doth guard that silent door,
Great Keeper of the grave.
—ANNE ROSS COUSIN,
“TO THEE, DEAR LORD, O CHRIST OF GOD”
As our family gathered in the living room and adjoining areas, Mark came up behind me and quietly asked, “Is everybody okay here?” This was the first time our children had been this close to someone who died, especially a baby. I tried to reassure him, “I’m watching. They’re doing great.”
I placed Emmalynn in Mary Elisabeth’s arms per her request. She held the baby and gently stroked the dimples in her hand formed by her tiny knuckles while chatting with Colette, one of the girls’ friends. Colette sat on the carpet near Mary Elisabeth, and they were calmly conversing as though this were the most normal thing in the world.
I quietly called our hospice nurse and let her know Emmalynn had passed into heaven. During my experience in working hospice, seeing the difference parents being calm can make in how their children coped emotionally, helped me now. While all of us were most certainly weeping at times, by grace no one was losing it.
Sometime after 2:00 a.m. the hospice nurse arrived, bringing with her our favorite social worker, Erin. Erin had been a gift to us during the time Emmalynn was living, and it was comforting to me that she made the extra effort to come be with us in the middle of the night.
Erin sat down on the living room floor with eleven-year-old Emily and asked how she was doing. They played a game of cards and chatted together for a little bit while I worked with the hospice nurse to complete paperwork at the kitchen counter. Erin wandered back into the dining area and said with conviction, “This is how it’s supposed to be.”
I nodded in agreement. The way our family was responding to Emmalynn’s death was truly a gift from God.
We all sat, waiting for the coroner. He’s a huge man, burly and bearlike. While I was a hospital nurse, I’d had interactions with him, and I knew that anytime after midnight is not his favorite time of day. Let’s just say his people skills can be lacking when they are most needed in the wee hours of the morning.
I was a little fearful the coroner would be gruff and ornery, and my Jesus knew I didn’t want to cope with that. When he came through the front door at 3:00 a.m., he asked about the Christmas lights that were lit up on the porch. “It’s my idea so first responders can find our house easily,” I acknowledged, wondering if I was going to get grief about it. Instead, he said, “I like it!”
The coroner spent a few minutes with the nurse, signing his name in the right places. He checked Baby Emmalynn and then came over to the end of our dining room table where I was seated. I was braced for some negative fallout. But he unexpectedly put his big hand on my shoulder and squeezed it gently. “You did good,” was all he said. The affirmation was a balm to my soul, and remembering that moment can still make tears smart in my eyes.
I called the funeral home myself and let the director know Emmalynn had died. He asked if I wanted him to come get her.
“Are you out and about at this hour?” I responded.
He laughed and said, “Not hardly.”
“Then we’ll bring her in the morning,” I said. “We need to get squared away here at the house. We can get plans figured out then.”
The nurse, social worker, coroner, and Colette left to go home.
Once again the family was ready to go off to bed, this time for the rest of the night. Charity piped up, “I’ll stay with Emmalynn. It was my night anyway.”
Mark looked at me in disbelief, but I could tell he was impressed with Charity’s maturity. He had been concerned that taking in a baby with a terminal diagnosis would prove to be detrimental to our family’s emotional health. While Emmalynn’s needs had sometimes been a source of tension and anxiety, the benefits of caring for her far outweighed any negative consequences.
I went upstairs but was unable to sleep, tossing restlessly. I softly crept back down the stairs and to the living room to find Emmalynn snuggled into her recliner as usual. Charity was on the couch next to her, lying on her tummy, with her arm stretched out toward Emmalynn. Charity’s hand was gently resting on top of the Winnie the Poo baby blanket. Charity had slightly curled Emmalynn’s little left fist around her finger one last time before falling asleep.
I sat down on the floor on the other side of Emmalynn and curled her right hand over my finger. I couldn’t really pray in that moment, but I was reflective. The Bible says that Jesus’ mother Mary was told about the forthcoming baby and “kept all these things, and pondered them in her heart” (Luke 2:19 KJV). I sat next to Emmalynn in the early morning hours and pondered too.
When Mark came down about 6:30 a.m. to get the day started, I went back upstairs to my bedroom to get a little rest.
I later learned that when Andrew came to the kitchen for breakfast he was a bit wild-eyed. “Where’s the baby?” he asked with a little anxiety.
“Emmalynn is in the living room with Charity,” Mark assured him.
Andrew went into the living room and pulled his baby sister into his arms. He held her carefully and kissed her and cried and said good-bye. Then he finished getting ready and went off to school.
For months I had no idea how important it was my son had this time with Emmalynn.
I got up for the day about 9:30 a.m.
“Mom,” Charity said, “Emmalynn has kind of thrown up on her sleeper and blanket, and she’s stiff.”
“I know, sweetheart,” I said. “I’ll take care of her.”
I hugged my brave kiddo who was finding her way through all of this with a somber uncertainty but determined to be part of it all.
I pulled together what was needed for the funeral home and gathered Emmalynn into my arms for the last time and carried her precious little body out to the car. Mark drove while I sat in the passenger’s seat holding my baby. Charity was in the back, along to help in whatever way necessary. She was embracing all the aspects of caring for a dying child from start to finish.
Emmalynn’s funeral was scheduled for a Monday morning. It was an inconvenient time for family and friends to attend, but I wasn’t able to arrange a better one. A small stipend through Medicaid covered the cost of the casket, embalming, and the opening and closing of the grave. The burial site itself was gifted to us as was the time donated by the funeral home personnel. With all the medical debt we had acquired over the course of my most recent illnesses and surgeries, we had little money to pay for anything grander than the bare basics.
I was surprised at how foggy my thinking was after Emmalynn died. I had thought the shock of her death would leave me numb but able to function. This wasn’t the case. I had to make decisions about where she should be buried, which pink sleeper she should wear, which knitted hat, and what blanket to wrap her in. That I would never see her or those items again was cause for an almost continual flood of tears. Honestly, how can a body produce so much moisture? I have no clue how I didn’t end up completely dehydrated given the volume of water flowing from my eyes and cascading down my cheeks.
I woke up on Monday, the day of Emmalynn’s funeral, and could hardly move. My body felt as if it weighed a thousand pounds. I was dreading going to the service. How silly it seemed to have called it a celebration while planning for it the week before.
The tears wouldn’t quit flowing.
I didn’t know what I was going to wear. I wasn’t sure anyone was going to be there because several people had told me they couldn’t get the time off work to attend or they simply couldn’t bring themselves to come because they felt it too sad.
I lay in bed until 9:20 a.m. when my husband finally said to me with concern but gentleness, “You’re going to go to the funeral, right? I mean, we need to leave in a few minutes and you’re not even dressed?” That man is a saint. Not once did he say, “You know, we never should have done this. I don’t want you crying. That’s it! We’re not doing this again. I had no idea you’d take it this hard. I’m sorry I agreed.”
That would have made me angry and feeling guilty for mourning. Emmalynn was deeply loved, and our grief over her death was legitimate and mirrored the emotional investment we had made.
I struggled to get out of bed and stood in front of the mirror in the bathroom. I sternly told myself repeatedly, “You’ve got to stop bawling!” I didn’t listen very well, and that was evidenced by the blotchy face, the swollen eyelids, and the inability to apply any makeup because my tears would have washed it right off again in streaks.
Choosing clothing from my closet and getting dressed was like trying to run in a swimming pool; every movement was labored and more work than I felt I could manage.
I put on a simple white blouse with thin pink-and-black stripes and a black skirt. I looked like death wearing all black, the traditional funeral color, but no one needed to wonder any more than they already would be, if I would have the strength to remain standing.
We pulled up to the funeral home, and oh my goodness, you have no idea how wonderful it was to see the folks who made the effort to attend. I felt my heart lighten up a little to see the faces and feel the hugs people offered. No one spoke unkind words, stating some version of “She wasn’t your real kid. What are you so sad for?”
Instead, as one of my friends put it, “We tried to hold back as though to guard ourselves from being hurt, but instead, we caved and fell in love with Emmalynn.”
Given Emmalynn was a baby, we had expected attendance to be nominal and set up only a couple dozen chairs. I mean, how many friends does a fifty-day-old little girl have? Well, she had enough that three adjoining rooms were filled and we ran out of folders.
My son, Andrew, bless his heart, is a natural host. He took the memorial folders and handed them out and helped people find a seat and sign the guest book. He was not paid staff that day but fell into the role easily and made those who came feel welcome and wanted.
A few weeks before Emmalynn died, I had asked John, our worship pastor at Crossroads Community Church, to officiate at her service. He had looked a little taken aback when I requested his help. I told him to think about it and let me know. When Pastor John followed up on my request, he said he would be happy to play his guitar, sing, and help give the sermon at the funeral. I didn’t find out until after Emmalynn’s service was concluded that not only was her service the first child’s funeral he had officiated, but it was also his first funeral, period. He stepped up, creating a wonderful memory even though he had the unenviable task of giving the parting message for a child.
During Emmalynn’s service, the attendees had the opportunity to share a memory of her or one way she’d had an impact on their lives. Jonathan, our eldest son, stood up and shared with the group first.
“I questioned if bringing Emmalynn home was the best idea, knowing her condition was terminal. Was it worth getting to know, care for her, and love her only to see her go so soon? And my mom said that she’d rather have her die at home with people who cared for her than in the hospital. After she came and went, I couldn’t agree more. It made us stronger as a family.”
My son Joshua spoke after his brother. He told everyone he hadn’t wanted to come home from college after Emmalynn had been brought home. He had been concerned, really concerned. “Ah, Mom,” he said, “what are you doing?! Haven’t we been through enough already without adding this too?” He was referring to the serious negative outcomes of my surgeries and autoimmune disasters. Why in the world was I choosing to bring a terminally ill baby home to die? It made no human sense to him. These were his words regarding our family: “We’d been in survival mode, barely existing for a couple of years.” We had experienced so much unbelievable loss on every front.
But to Joshua’s surprise and relief, once he had decided to come home and meet our little darling, he was amazed at the transformation in our home. He said, “Where it had been just black and white, all of a sudden there was color—everywhere.”
Mary Elisabeth shared next. She had pulled night duty with her little sister. She has always worked very hard to keep up with her next oldest sisters. Both Johanna and Charity handled the night shift with Emmalynn. Mary Elisabeth wasn’t really feeling super brave, but not to be outdone or left in the dust, she also helped shoulder the burden. She was honest with folks:
“I just remember at one point not being sure if she was breathing or not because it was raspy. So I turned the light back on and rocked her in her seat and decided I’d stay up with her until she died or relaxed. I think that’s when I decided that she would not be alone while I tried to sleep. I talked to her a lot too, until I eventually fell asleep. I was a bit scared of her dying while I was on shift, but I gave it up to God, and there was great peace in that, and I stopped being scared of Emmalynn’s condition so much.
It was a good opportunity to grow and to pray. In those situations, you learn to trust in God’s sovereignty more than ever. It was comforting and necessary that my mom told us it wasn’t our fault if she died, and that if we need
ed anything she was right down the hall. It took the pressure off from external sources. But there’s always internal pressure not to mess up in case you’re the one to cause her death. I guess I just figured she was worth it.”
A number of women gave testimony of how this tiny little girl had affected their lives. For some of the mothers, she was the first baby they had held since their own had died. The healing she brought to hearts ravaged by grief over their own previous losses was a completely unexpected blessing of sharing her little self with our friends. Stan and Bess both came to her services and expressed the redemption they felt over the loss of their beloved son, Davey, who hadn’t been granted the dignity of a funeral. They believed God was answering their prayers and healing their grief through Emmalynn’s life and death.
The most amazing realization I expressed that morning was that Emmalynn needed me in my weakness. She didn’t need me busy. She couldn’t maintain her temperature well, so we held her almost constantly to keep her warm. I could do lots of cuddling while sitting or lying down. She didn’t really need me to do much for her but simply to be with her. She was most in need of being loved, and this I could do whether I was physically strong or not.
Daniel, my sweet young friend who has not let Down syndrome define him and dictate what he can and cannot do, wrote and shared this poem about Emmalynn:
All is calm,
all is bright outside tonight.
In this moment of silence
I am on my own.
I’m standing still in the memory of Emmalynn,
my dearest, sweetest friend.
We are letting her go home.
She is in His hands.
In tears we’re rejoicing.
I Will Love You Forever Page 7
