It was a Saturday morning in October and my five-year old son Drew and I were having a quiet morning. My husband, Rick, was off to work so we were just hanging out and doing routine things. The mood was bright as we were expecting our second child within the week. I had been to the doctor the day before and the report was all good.
As the day progressed, I noticed that the baby in my belly was quiet. Unlike my first born who got rambunctious the closer we came to delivery; this baby was staying still. While we continued to play, I began to pay close attention, waiting for the baby to wake up and give me a good swift kick.
At some point in the day, I became still. I went upstairs to the nursery and sat in the rocking chair and just rocked. Waiting. And waiting. After an hour, I began to have silent tears roll down my face. My son, who was playing on the floor, looked up and asked what was wrong. I told him I didn’t feel the baby kick and was sad that something may not be right.
That dear, sweet, older brother-to-be, went to the nearest phone, which in 1988 was a plug-in phone, and dialed his dad at work. I didn’t ask him to. In fact, I was frozen. I was so afraid and didn’t want to know if something was terribly wrong.
My husband came right home and after understanding the situation called our doctor who insisted we come right in. Our son was sent to play with his best friend, and we headed to the hospital…with much dread.
The first thing they did once we arrived was listen for a heartbeat and found it! It was such a relief. Next, they connected the ECG Monitor that shows the variability of the heart rate. It was minimal and that was not a good sign. After visiting in the hallway for a few minutes the doctor informed us that they were going to do an emergency C-section. I was scared. I couldn’t even imagine what the problem was and was terrified to find out.
They did the surgery under general anesthesia.
As soon as I woke up, I asked, “How is my baby?” She was alive! But not doing well. She was born with a hemoglobin of 3 due to an umbilical cord hemorrhage. While 15 is optimal, 6 is considered the minimum acceptable. The level of hemoglobin needed is determined by the oxygen demand of the tissues and critical organs. Our daughter, whom we named Alison, did not have enough.
Her body had replaced her blood with fluids, and she looked like an inflated balloon. Of course, we asked if she would make it. They told us the first step was to get the body to release the fluids and give her a blood transfusion. Our kind and gracious nurse told us she believed that girls were better fighters! She gave us hope.
As the days unfolded Alison gradually lost the extra fluid but was still in critical condition. As the shock began to wear off and we started asking more questions, it was clear it wasn’t just about whether she would live. Without oxygen circulating in her body for some period of time it remained to be seen how her brain had been impacted and its effect on her future abilities. No one could say. We had to wait and see.
I vividly recall our pastor at the bedside praying with us. Knowing that Alison could pass or live with potentially significant brain damage, I
asked what in the world do I pray for? His answer was a gamechanger for me and my relationship with God. He reminded me of the phrase from the Lord’s Prayer, “His will be done.” My job was not to decide what outcome was best but to just love her.
In fact, that was a family motto for her entire life. Alison did live and we took her home after 4 weeks. We had no idea what she would be able to do in her life. We knew she had significant brain damage, but we didn’t know how that would manifest itself in her development.
Slowly, as every milestone came and went, we began to realize that she would have very limited capabilities. Alison was not able to move her body in an intentional way so no sitting, crawling, or walking. She was not verbal and didn’t utter mama or dada. When she was two, we realized that she was aspirating on her formula, so she had a feeding tube inserted.
Yet we loved her with all of our hearts.
It is love that drove us to have a third child soon after Alison’s birth. To experience the joy of birth instead of the trauma. We had another son, Riley, about 14 months after Alison was born so she was our sandwich girl. God gave me two big, strong sons, one on each side of her, to help with her care and to be sure she was always supported.
Alison went everywhere we did. She was a “normal” part of the family. Early on we decided we had two choices: build our family around Alison’s care and limit our experiences or incorporate her into our family lifestyle and allow her to be as “normal” as possible. Many looked at us and saw a burden; we saw a normal family that required different logistics. All of our children had different personalities and needs. While our boys were athletes and filled our weekends with sports, which Alison usually attended, Alison had weekly therapy and lots more doctor's visits. She went to restaurants and was tube fed in public. She even rode in golf carts with her daddy. All of these things were mixed on the family calendar. It was our “normal”.
When Alison was younger it was easier. She sat in a regular stroller. In fact, with the last two kids so close together in age we had a double stroller for a while and most thought they were twins. As Alison grew, her wheelchairs had to be more supportive, and we needed help getting her in and out of the van once she had to be transported in her wheelchair instead of a car seat. So, we had a series of accessible vans which the boys loved! Equipped with tv, room for the whole basketball team, fold down seats for sleeping, they thought it was what every family should want!
She brought great joy! She would laugh when she was happy and her whole face lit up when she heard our voices, or we played her favorite music.
As a golf pro her dad worked long hours and over the weekends. The boys were able to be caregivers as capable as Rick and I were. Their friends accepted Alison for who she was, knew she would be coming with us, and she was a fixture in their lives as well. There were no pity parties; no one avoided her; no one complained that we brought her along. She was just Alison, our daughter and the boys’ sister.
While kids like Alison have more than their share of health issues, and she had several hospitalizations and surgeries in her life, she lived a relatively healthy and happy life.
I will never forget her first serious hospital experience. She was about 8 and was hospitalized for pneumonia. During a routine breathing treatment, something went wrong and she had to be moved to the ICU. When hospitalized we never left her alone because she couldn’t communicate in a normal manner. We knew her movements and her body language, her sounds and what they meant. One of the most peaceful nights of my life was sitting up all night with her and the intern in the ICU and having a discussion of parenting and life choices. I don’t remember his name, but I am forever grateful for his trust and transparency. After this bout, Alison recovered. Before she was released, a neurologist who was not our regular caregiver, told us that once this happens her life span was about another 8 years. My husband and I disregarded his warning! He knew science but we knew our daughter. There was no way to predict her future. She was loved and happy. God would determine her life span and we were prepared for it to be long.
The first time I had to call 911 was in 2007. She was 19 at the time. My husband was away at my oldest son’s college golf tournament and my youngest a junior in high school. I woke up that morning and she was barely breathing. She seemed a little off the night before, so I got up early to check on her. She was alive but barely. I started CPR and called 911. My dear neighbor saw the ambulance arrive and came over. She rode with me to the hospital. I had no idea what was wrong. Eventually, I was informed that she had sepsis. She had been treated for a urinary infection but apparently the antibiotic didn’t do its job. The whole family gathered as it didn’t look good. But Alison is a fighter and she pulled through. She has to be on oxygen when she came home but that was temporary and soon we were back to our “normal.”
Alison was not able to attend Drew’s college golf matches as they required flying and that is one thing she never did. She liked her routines and familiar places. However, she did get to go to some of the baseball games her younger brother Riley played in college. He was in the SEC and she attended games in Nashville, Arkansas, Alabama, and eventually the College World Series in Omaha—places we could drive. She could always feel the vibe and excitement in the stadium.
On a Sunday in March 2023, after a late winter snow, my youngest, Riley was watching her while I worked in my office. No one else was home. After a bit he called out to me that he was going outside to shovel snow and I finished up what I was working on and came out to greet her. But in that moment of quiet, she decided to go to Jesus. She wasn’t sick but she had worn out. She was ready to go.
I called 911 and tried to resuscitate her. Riley came in and helped. Drew and Rick were called to come home. But neither we nor the paramedics could bring her back and she died on March 24, 2013, at the age of 24.
She outlived predictions but no parent is ever ready or prepared for something like this. For us, there was no warning or indicator of pending death. She was here one day and gone the next.
We entered a fog of an alternate reality. We had to make many decisions in the days to follow that we were not prepared for. We collected a lock of her beautiful hair. We decided to donate organs. We opted for cremation since we had no final resting place picked out. And on and on.
We spent time with her before she was cremated to say goodbye. While you may find this morbid, I wasn’t ready to say goodbye and took pictures of her on my cell phone and kept them for years. She looked so peaceful in death in a way she hadn’t in life. She resembled a sleeping angel.
To this day we have her urn on our mantel as we are not ready to part with it and feel peace seeing it every day. It is not her body but her memory we keep close. For years I set a place for her at Thanksgiving, but we no longer do. Alison didn’t really have toys like most children, so she collected angels, and we often referred to her as our angel. At Christmas, we hang her stocking and everyone is gifted an angel –an ornament or a display piece—to remind us of how special she is to all of us, and her spirit is woven into our daily lives even now.
Her death, as her life, taught me many things. Things I wish I didn’t have to learn that way. And yet there is a purpose. My experience has been helpful to others who have lost their children. It is not unusual for me to get a call when a friend’s or acquaintance’s child passes. Inevitably, they are looking for guidance and a loving heart to help them through their fog. “I don’t know what to do” is the most common statement. Of course not! Who does?
One mother didn’t want to see her son at the funeral home after he died of a heart attack as she wanted to remember him in life. But she didn’t make that decision lightly. We talked at length about that choice to ensure she would have no regrets. Yet, I still had pictures of my daughter on my phone.
How you choose to celebrate your child’s life, how you move through each day in the weeks and months ahead—whether you want to be surrounded by people or totally alone, if you want to become an activist for the cause of death or not, how you answer how many children you have when asked by a stranger after having lost one of them—these are all choices which reflect how we lived and loved. None of the choices are wrong. There is no “right” way to grieve.
One thing no one who loses a child needs to be reminded of is that it is every parent’s worst nightmare. There is no greater grief. It changes your life forever. Your old life is gone. The question is what does your new one look like?
How do you put it back in some way that you can bear? What will motivate you to get out of bed in the morning?
As you gradually put one foot in front of the other you will begin to find the answers to those questions. I believe that it is hastened by hearing the stories of other parents who have been tormented by similar experiences and questions. How did they find their way back? What were their choices? How did they feel years later? How do they manage the birthdays and holidays? Their answers may not be your answers, but they give food for thought. They show it is possible to find a solution. We can be comforted by knowing we are not alone.
For me, the Rock on which I stand is Jesus Christ. I know my daughter is free from her physical limitations and dancing to her favorite music in heaven. I have been called to the purpose of helping other parents deal with this most traumatic life experience. For the last ten years, I have done it informally. I have raced to the aid of friends who have lost children of any age for any reason—from SIDS to drug overdoses, from heartbreaking diseases to suicide. We all have the same questions. What do we do now? How do we survive? Will we ever be happy again?
It has been an honor to help them navigate this grief journey. On the tenth anniversary of my daughter’s passing, I feel inspired to extend the circle and reach out to people I don’t know to assure them they are not alone. That they are cared for. That we feel their pain. That there is comfort for them in hearing the stories of others and knowing they are never alone.
ALISON ELIZABETH REYNOLDS 10/1/88 - 3/24/13
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