Our daughter Alison's story.

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 the medical team visited 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. But we loved her with all of our hearts. 

She went everywhere we did. Alison had multiple wheelchairs as she grew. We had a handicapped van. She went to restaurants and was tube fed in public. She went to her brothers’ baseball, soccer and basketball games. She even rode in golf carts with her daddy. 

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. 

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. As a golf pro her dad worked long hours and over the weekends. The boys were able to be care givers as capable as we 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. 

On a Sunday in March of 2013, 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. 

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 the next weeks, 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 or violence. 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