On Surviving the Death of a Child - My Presentation to Chaplains in Training
There are many different ways I could introduce myself.

If you want to know about my professional life, I would say that I am a teacher, having taught classes on childbirth and breastfeeding in the past, and gardening classes in the present.

If you want to know about my spiritual life, I would tell you that I am a Christian. I am a member of the LDS faith. At times in my life I have felt my Heavenly Father so close that I felt as if I could turn quickly and see him, while at other times I feel like there is a thick concrete wall between us.

If you would like to know about my personal life I usually tell people that I come from a family of five children, live in Utah County, that I have been married to my sweetheart for over 12 years and that I am the mother of seven children. But that's a lie, a lie that I tell because it's easier than telling the truth, which is that I have eight children, but only 7 of them live with me.

Here you want to know about my life as the mother of a child who has died. Sometimes I share this in gentle ways, saying that my daughter passed away 5 years ago, that with her medical condition, she was only supposed to live to a year or two and we were lucky to have her for four. Other times I don't want to be gentle. I want to be harsh and let people feel the sharpness of my experience in a very small way. When I'm feeling that way I don't use words like passed on, or angel, or Heaven. I use the word dead and that is more descriptive of my true experience.

To have any hope of understanding our experience you have to know, not only about Taleah's death, but first about Taleah's life.

She was born evening of Pioneer day, 2004, with fireworks thundering in the background. She was our third child, the younger sister of 6 year old Ethan and 2 1/2 year old Natalie. She was strong and healthy when she was born. We held our new squalling baby and loved her from the first moment.

For six weeks she was just our child and we were oblivious to any future challenges she would face. She ate and cried and pooped and slept like any other baby. At 6 weeks old I took her to a routine visit at the pediatrician, while there I asked if I should be concerned that she wasn't yet lifting her head when on her belly. I watched the pediatrician tap on her knees and look her over, then tap on her knees again and look her over and then tap on her knees a third time. I knew there was something really wrong. We were referred to the neurology department at PCMC. Taleah was diagnosed with type 1 Spinal Muscular Atrophy. The more I read about the condition, the more despair I felt. We read that she would lose strength in all her voluntary muscles, which meant that not only would she never walk or sit, but she would lose strength until she was unable to swallow or breathe without assistance. We read that 80% of children with this diagnosis die before a year and 90% before two. We read that there were no treatments, no medications, no hope.

We clawed and fought our way out of that dark place and discovered hope. We spent much of the next few years talking with other parents of children with SMA, meeting with doctors, flying to other states for the best medical help. For the next four years we loved our daughter, we fought for her, we played with her.

Her condition never affected her ability to think or to feel so we treated her as a little girl first and treated her medical condition second. She was witty and funny and talkative. She loved to put on mom's make up and watch the Wizard of Oz and wear her "Super Tia" cape. She said the funniest things.

One of my favorite Taleah stories happened near her third birthday. Her Aunt summer gave her a "Fairy Princess Kit" for her birthday with a wand and strap on wings and a book. I helped her open it and showed her the contents.

Her eyes lit up at the gift, but when I asked if she wanted to try on the wings she shook her head and looked very concerned. Natalie asked if she could try on the wings and Taleah said yes.

After Natalie slipped the pink glittery wings on, Taleah asked "Can you fly now?" We laughed and explained that they were just for pretend. I handed the wand to Taleah and she stared at me with the angriest little furrowed brow. When I asked what was wrong, she replied: "You're not turning into a pig!"

She also said sweet and sad things:

When she was about 3 1/2 we had this conversation at bedtime one night:

Taleah: When I get big I'm going to walk.
Me: Oh, honey, some people's legs are made for walking, and some are made to drive fast in a power chair.
Taleah: My legs are made for walking.
Me: Sweetheart, I think your legs are made for riding.
Taleah: When I grow up I'm going to walk and then you'll say "Look she's walking!" and Tata will say "Look she's walking!"
Me: We sure will.

Taleah had many hospitalizations and many close calls but she just seemed to pulled through over and over again. It felt like she always would, I couldn't imagine my world without her.

On 7/22/04, I was on the road when my cell phone rang, it was John. He said simply "Come home now!" I think I knew from that moment that she was gone. When I drove up my street it was filled with ambulances and fire trucks and police cars. My living room was filled with emergency personnel frantically working on her and I knew she was gone. We had to get to the ER before they would call it, but I didn't need anyone to call it for my sake. She was gone.

John told me that Taleah had been watching Little Mermaid with Natalie and Ethan. The movie ended and John went to rewind the video, looked over and saw that her coloring was all wrong and in his heart he knew she had already died.

At the hospital as you might imagine, I cried. They removed the tubes and wires and my baby, my vibrant, brilliant baby who an hour before had been fine, was dead. John was the first to hold her. He cried deep wracking sobs. I called my mother and my father, but my mother was 5 hours away and my father was unreachable. I called a friend and asked her to come.

I didn't want to hold Taleah for a long time. I let others hold her while I played with the curls on her head. I remember being surprised and grateful that her body was still warm. I remember family starting to arrive, grandparents, aunts, uncles, friends all came to the room to love on my baby. Eventually I was ready to hold her. I am glad I wasn't pushed into that before I was ready. It had to be on my terms. Her body, which was so low tone in life, didn't feel much different in death. Many times I lifted her eyelids to look at her eyes. While the rest of her body was pale and washed out, her eyes were the same brilliant blue-green they had always been. I found comfort in the fact that her eyes didn't look dead.

My children were brought to the hospital, Ethan was now 10 and Natalie was 6 1/2. John and I met them in another room and explained to them in simple, honest terms that Taleah had died. When we went back into the room they stood stiff and uncomfortable, just looking. After a little bit I realized they needed time without all the eyes on them so we asked everyone to leave but John, myself and my kids. Without all the watching eyes, they were able to let their guard down and do what they needed to do. Natalie began to touch and stroke her sister, Ethan asked questions that we answered as honestly as we could.

Time passed, sometimes quickly, sometimes slowly that night. While most of the time things were heart wrenching, there were moments of almost giddiness as well. The stress was so big and we were all wound so tight that it seemed to just occasionally bubble over. At one of these moments I was holding Taleah's long four year old body in my lap and looking at her very pale, colorless face. Knowing that her blood would run to gravity I tipped her head down until her cheeks were pink again and we laughed at the absurdity of it all until I was gasping.

At some point during the night we were asked if we wanted to donate any organs that could be preserved, I told them absolutely. After all, she was dead and didn't need her heart valves or corneas any more. I also asked if we could get in touch with Dr. Swoboda, a doctor who's research focus is SMA. Dr. Swoboda called back personally and asked how long we were going to be there and if she got in her car and drove right down from Salt Lake, would she make it in time to see Taleah? I told her we would still be there. Dr. Swoboda had been with us since Taleah was only a few months old, she brought little trinkets to the hospital when Taleah had pneumonias, she fought for us when we had battles to be fight and had gone above and beyond her call of duty in making sure Taleah always got the care she needed. She also loved Taleah with a fierceness and tenderness not often seen in a doctor/patient relationship. When Dr. Swoboda arrived at the room, she gathered Taleah up in her arms and just curled her body as tightly around Taleah as she could. She sobbed with her face buried against Taleah in heartfelt emotion.

When the time was drawing near that we would need to leave Taleah, I found it almost impossible to think of walking out of the hospital and leaving my baby there alone, it just seemed so wrong, so cold. Dr. Swoboda, in a gesture of immeasurable kindness, offered to take Taleah's body up to Primary Children's herself. I walked out under the stars with my child's body in my arms and set her in the front seat of Dr. Swoboda's car, securing the seatbelt around her. John and I, along with a few other family members stood in the parking lot and waved until we couldn't see the car anymore. I will never be able to repay her for that poignant, act of Christlike service.

... and Then we had to go home. The house was just as we had left it, only Taleah wasn't there. Her equipment was there, her clothes were there, her toys were there, but she was gone. It was this point that our life was forever divided into before and after.

That night I fell asleep quickly and slept deeply all night. In the morning I remember coming slowly from sleep to wake and as I did, the reality of my child's death crushing down on me. I sobbed and wailed and clung to my husband, his embrace being the only bit of comfort I could find.

Many family members came around that day after, and my mother helped me start making the plans for Taleah's funeral and burial. I wanted to do it quickly, but found myself unable to kick out of the whirlwind in my mind to write an obituary or make any decisions.

Things started coming together in spite of the feeling of numbness and detachment I felt. We chose a less traditional route for much of those arrangements. Her casket was a simple box with a hinged lid made by my uncle. We painted it white and then had a party where we had friends and family put brightly colored hand prints in paint on the casket. Because she loved the Wizard of Oz, we had a blue and white checked dress just like Dorothy's made and even found sparkly ruby slippers for her to wear. The day before the funeral we had her body brought to our house where we dressed her and bathed her in the comfort of our own home. I allowed my children to come and go as they pleased and involve themselves at their comfort level, without pressure.

That evening we tucked Taleah into her bed, and went to bed ourselves.

After the viewing we held the funeral in an amphitheater under the trees, both John and I spoke. Natalie read a poem, balloons were released, bubbles were blown, doves were released and my sweet baby's body was lowered into the ground.

I did not know how difficult it was going to be to have everything be finished. All the time and emotions and energy we had poured into nurturing this child, loving this child and honoring this child were complete. Again we went home to a house that was too quiet, too empty.

And this is the point at which it gets difficult to talk about. Not because of anything that happened, but because there was nothing new to happen. I was in pain, John was in pain, Ethan and Natalie were in pain and there was nothing to say that hadn't already been said.

There were many, many moments where the sheen of the bubbles in the bath, or a butterfly flying through our yard or seeing a child about Taleah's age would reduce me to little girl tears. There were other times, when I felt like I should cry but I just couldn't.

There were kindnesses offered that gave me glimmers of peace. Ward members who brought dinners for many days after the funeral, a card received that said I was a good mother to my daughter, someone else remembering that it had been exactly a month since Taleah died so I didn't feel so alone on that day. There were kindnesses offered with best intent that were painful. Being invited to activities where everyone knew that Taleah had died but everyone avoided bringing it up, trite comments about her being in a "better place" or "In the arms of Jesus" and people that came to my door and fell apart, putting me in the awkward position of comforting them.

Days went on and I still hurt in a deep, agony filled way. Some moments I was at peace with my daughter's sudden, yet expected death, other times I wanted to rage and throw things. Potatoes were the best things to throw, they were cheap, replaceable and took a good heave into the street to make them break.

I've described the grieving experience as labor in reverse. When having a baby those strong, intense sensations start far apart and get closer and closer together. Grief also came in waves, at first crashing into me every few minutes of my waking hours but slowly, very slowly the waves began to spread out. There were times that I could anticipate those waves, I knew that the anniversaries of her angel day would be awful, whether it was one week, one month, four months, a year, I knew it would be suffocating. I knew holidays would be filled with joy as I watched my children's excitement and filled with pain that one of my children was missing. There were other times that it would just hit me out of the blue, like the time we went to the movies as a family and I kept looking around feeling like I was missing a child and then realized that the child I was missing was Taleah.

Every experience of our lives is colored by Taleah. When I have brought new children to our family there is joy at the newness of that child and sorrow that they will never know their big sister. When we have a family picture taken, it is always sad to me that I will never have a picture of all of my children alive and together. I watch the other children her age to see what she might be doing, were she still with us, but really she is four, she was four when she died and she will always be four to anyone who knew her.

One interesting piece of this for me and also for my children, is that it has made the boogie man real. There is no illusion that bad things only happen to other people, there is no illusion that children never die, there is no illusion that everything will work itself out. Sometimes really bad things happen to people who haven't done anything to deserve it, sometimes children die and sometimes the way things work out is with a dead sister.

A new chapter in this story comes with our now youngest child. Her name is Tabitha and she will be two years old tomorrow. She is a little girl who loves bubbles and Elmo and fingernail polish. She smiles often and laughs easily and just like Taleah, she has SMA. She is a joy and a delight to our family and she will die young, maybe this month, maybe not for several years, but she will not live to adulthood.

People act as if going through this once, a person is more prepared for it when faced with it again, but that is far, far from the truth. The second time around is so much more difficult. You have many facets of grieving all vying for first position in your heart. You have the grief for the older child who died and a constant reminder of her as you look at the younger child, living but slated for a youthful death. You have the anticipatory grief for the child who is living and breathing, but won't live a full life. But the worst part? The worst part is that you know, you know the pain you will feel when she dies. For Tabitha's first several months I couldn't look at her without seeing death. Every time I looked at my new baby I wanted to beg, to plead with God "Please, I can't do this again, I can't!" It took me much longer to feel bonded with her than it did with any of my other babies, the ability to love deeply is inextricably caught up in the willingness to hurt just as deeply and it took me some time to give myself over to both the joy and pain of loving another child who would die.

Eventually the fear of the pain took a backseat to the mother's love I felt for this child and bit by bit she became just "my child" rather than "my child who will die."

I still think of it often, the fact that this living, breathing, child of my heart will be lucky to live to almost four like her big sister. But most of the time she is just my daughter, and I love her deeply.

--Monica English