Losing Ashleigh: A Parent's Experience with Child Loss

Our firstborn child arrived in 1993, and even though we'd had every prenatal test known to man, none of them showed that Ashleigh was a very disabled little girl. I think it was easier that way. Her diagnoses trickled in slowly, giving us time to adjust to what we needed to learn, what we needed to do. It helped us cope. We learned to love her for who she was before we learned the names of the disorders that made her that way.

When she was 3, her neurosurgeon uttered 2 words that hit us like a bombshell. "Life expectancy."

Our little girl was such a fighter, it never occurred to us that what made her who she was would eventually kill her. They told us that we had 15 years and my brain did the calculations. At least 12 years left with our little girl...but I knew in my heart that she would prove them all wrong because a gift like Ashleigh should never fade away.

Ashleigh was more than a fighter. She did it with flair. Her laughter rang through our house and settled in our ears like a soothing balm to the heart. Oh yes, Ashleigh was a happy child, and she brought light and life to everyone in her presence.

Ashleigh was the complete package. People liked to focus on the negatives, but they couldn't understand just how special she was. For every trial that we faced with her, she brought happiness, determination, and love. For every difficulty, there she was with exactly what we needed to see us through. So encompassing were her gifts that we were puzzled when people would point out what a burden she was, and how hard it must be. Ashleigh was Ashleigh and no one ever said that parenting any child would be easy...but as with any child, the benefits outweighed the negatives by far.

So, we took our cues from her. While we prepared for the eventuality that we would most likely outlive our daughter, we instead chose to focus on life and all that it could bring. It always lingered in the back of my mind, and at first it was difficult to accept, but over time I made peace with the fact that we were doing the best that we could, the 'right thing', and that it would all work out in the end. I had faith in myself, in my daughter, in life and love.

I will never forget the day that Ashleigh died. It was so unexpected. The instant I knew that my little girl was gone, my throat opened up and I howled out a sound that only a mother can make. To this day, it echoes in my ears and chills me to the bone. I am glad to say that her laughter is louder than that sound. I am relieved to say that I have never heard that sound before and I hope never to hear it again. It was as though my very soul screamed out against the painful truth.

I was disappointed in myself. I thought I had prepared. I thought I would have handled it better. I thought I would have more warning. I thought I would be able to say goodbye. I thought I had 15 years and then some, but I didn't. I felt cheated and angry, but mostly I felt pain. My baby was gone. My flesh and blood. No amount of love and care could keep Death from her and I felt that I had failed her in some way. I know that no force can stop Death, but I'd pinned all my hopes on the strength of a Mother's love, and I felt that somehow I had been found wanting.

It is a difficult thing to work through. Mixed in with waves of grief are poisonous barbs of regret, and I think that no matter what you do, when it washes over you they will find you. It isn't fair, it doesn't seem right, but that's the way life works.
I felt like I'd been transported to some alien landscape where the rules don't apply. I was lost and terrified, I was crippled by grief and anger. My family was not there to support us so I felt abandoned. They were 10 minutes away and we got no more than a phone call until the funeral. Our friends didn't know what to say, so many of them said they were sorry, and then they said nothing at all. The uncomfortable silence was deafening.

No one really knows what to say to a grieving mother. There is a saying, and I'm paraphrasing here, but it is something along these lines: There is a word for a woman who's husband has died, and that is Widow. There is a word for a woman who's parents have died, and that is Orphan. But there is no word for a mother who's child has died.

I think it is because it is the unnameable. The unspeakable. We can't come up with a word to fully encompass that type of loss. It is just too painful to even contemplate. There is no word for a mother who wears black ribbons, because there can be no name for her.

The consequence of that is that we feel lost. Words help us to put things into categories, to make them small enough to fit inside so that we can cope...but mothers who have to bury their child enter a void.

We enter it alone. I didn't realize how truly alone we are when we are forced to walk through that door. I thought that people would surround me to make the trip easier, but I found that no one could reach me, even if they were right next to me. More often, I found that many of my friends didn't know what to say at all so I felt cast aside. They didn't ask me the right questions to see me through, if they asked me anything at all. Some asked me how I was doing, but many just avoided me. It wasn't that they didn't love me. It wasn't that they didn't hurt. There was a sense of reverence, and I felt alienated by being in a position I never wanted to be in.

I consider myself fortunate. Not only did I have some very good friends to see me through, but most importantly, I still had Ashleigh. Death could not take from me the things that she had taught me, and just as she had prepared me to live with her, she had prepared me for her death. She had given me every single tool I needed to cope with her loss, and though I was too upset to open the toolbox and pull out what I needed, none of her gifts had ever left me and soon I was able to help myself through it, because of her.

I found her funeral to be a very healing experience. So many people attended and spoke. So many people shared stories of how she had touched their lives. So many people laughed through their tears because she was such an incredible human being. In 12 ½ short years, she had touched more people than most touch in a lifetime and though we all experienced the pain of her loss, we are all better for knowing her and we are all thankful for the gifts that she has given us.

I don't know where she is now, because we are Buddhist and we don't believe in the things that some people believe in, but I can tell you one thing. If anyone in this world could take a bad situation and pull out the very best, it is Ashleigh. In fact, I have a sneaky suspicion that she wasn't here to learn anything at all. I bet she was here to teach all of us a thing or two and I, for one, am still willing to accept the mantle that she has placed on my shoulders, because the benefits still outweigh the burden.

I am just so thankful for every single second that we had.

Namaste, Ashleigh. Truly, the good in me sees the good in you, and I am in awe of you.

Ashleigh Marie Copeland
June 3rd, 1993 - February 23rd 2006