BY BLYTH LORD

Today marks what would be Cameron’s 19th birthday. She died 17 years ago, 5 days after her 2nd birthday.This year I am not feeling so sad about it, whereas 4 years ago I was a wreck.

This month we’re exploring the theme of Baseline. Baseline is really just a technical term for “the new normal” – it is the opposite of an acute, exceptional or extreme moment. It is where things are when they are stable and going along. I realize that every phase of my daughter’s life, and my ongoing relationship with it these 17 years later, can be understood through the lens of Baseline.

When Cameron was a healthy newborn baby, baseline shifted up and up every week as she developed typically for the first six months of her life, reaching her early infant milestones right on cue. She smiled on time, rolled over on time, and was even able to sit up by herself for a few weeks … At six months of age, her baseline was that of a perfectly healthy six-month old child and things were exactly as they should be. Our daughter was doing great, her baseline was where it should be. Life was good.

And then her baseline started to shift down. Almost as soon as we received her diagnosis at six months, her normal began to slip backwards, so slowly and so quietly that at first we didn’t notice: no longer could she sit up by herself; no longer could she roll over. On her first birthday, she could only just bring her birthday cake to her mouth – Goodness, she loved that cake! And shortly after that, she stopped being able to use her hands to bring toys to her mouth. I can’t remember when we stopped putting her in her exer-saucer. At some point, we must have realized she couldn’t keep herself upright anymore and we didn’t place her in it anymore. I wish I could remember if I actually registered this fact. If I did, it must have hurt because she had really enjoyed being in that exer-saucer.

Within 20 months, she wasn’t showing emotion on her face. I do remember when that registered. I was looking at a photograph when I noticed she wasn’t showing any emotion in the photo, and it hit me. I hadn’t seen her smile in months. She had lost that ability. This new normal, this new baseline, when I saw it, hurt a lot.

When it comes to an illness that is degenerative or not responding to treatment, the baseline descends over time, like stairs, until eventually it ends on the basement floor that is end-of-life.
Our daughter’s pediatrician actually talked explicitly about baseline with us, as a way to help us understand how she would be affected by every debilitating bout of pneumonia. With each pneumonia, he explained, her body would descend to a plateau or stair that was lower than the previous plateau, and while her body could recover from the acute event of the pneumonia itself, she wouldn’t be able to go back up the stairs. Her new normal would be that lower plateau. Moreover, he elaborated, the gaps between each event would get shorter, the pneumonias would come more frequently, the descent would quicken.

We found this explanation very helpful. My husband and I understood that it was only a matter of shortening time until she descended to a level that we felt no longer had any quality of life for her. There would come a stair that was the bottom. We trusted we would know it when we hit it.

She landed on that stair on May 5, 2001, the day after her second birthday. Her pediatrician told us she had yet another pneumonia. We knew that the next level down was not acceptable for her. Her life’s journey that began in a rapid bright ascent for the first six months, and then took 18 months to descend, had come to its end.

Just as baseline applied to her life, it applies to her legacy and how I grieve her physical absence and remember. At first, the grief was acute and the bouts of profound sadness came often. With time, they have come less and less so. The gaps between when I am overcome by longing for Cameron are getting longer. Indeed, I don’t remember when I last felt undone by it.

Today on her birthday, I wonder, will I ever be undone by it again? Am I disturbed that my grief has become so soft and gentle? Does this mean I don’t miss her “enough” anymore?

No, I think it means that my grief has reached a new baseline, a baseline that was inevitable and a baseline that is peaceful.

Happy Birthday Cameron. I love you with my whole heart and soul. I always do and I always will. It just doesn’t hurt so much anymore.

(photos of Cameron on her first birthday and her second birthday)