“What we have enjoyed, we can never lose… all that we love deeply becomes a part of us.” ~Helen Keller

I received a lengthy email the other day from Becca, a woman who had just accidentally found this blog. It was a beautiful, heartfelt email about her loss and how some of what I write resonates with her.

It’s been a difficult read in some ways, emotionally for me. I am a grieving mother and there are some similarities in the way you write to how I feel.

She goes on to write about her 15 year-old son who died two years ago.

… when a woman who was running late for a probation appointment (she had been put on probation 3 weeks prior and had already breached that probation) was angry and annoyed at the people in front of her because they were not speeding, so she drove onto the footpath.

Yes, you are filling in the blanks appropriately. She finishes the letter with …

I guess what I found from reading your blog is that while I have lost my child and you have yours, there are so many similarities..the lack of sleep, the “why”, the way people treat you, frustration with people, the whole “god” thing, doing it all on your own and so on.

As you and your mother say, to adore is more than love. I adore my son, I did before death, I do after. … Your daughter is beautiful and you are a wonderful dad.

At least I have one person fooled on that last point.

Claire had a perfectly normal five-year-old daughter, Sophie, until five days short of her sixth birthday. That is when she suffered a stroke. On Mother’s Day. And she never recovered. Not even close.

What is it like to have a perfectly normal little girl for six years, and then one day she becomes severely disabled, no one’s fault, unless you count fate, god or nature?

M also has a beautiful family. About a year and a half ago she was enjoying life with her twin six-year-old girls, her lovely eight-year-old daughter and her newborn son. Not to mention her amazing husband. Then suddenly one of the twins was in the emergency room. A stroke. Yes, it does happen to six-year-old girls. Unlike Sophie, she did very well. But “very” is relative. There are definite changes, in personality, in academic skills, in many facets of life. One moment she and her twin are on top of the world, together and equal, and then in the blink of an eye, they are worlds apart. One must not, but cannot not, compare the two, since now they are of different worlds.

There I was, minding my own business, well, actually dad was undergoing five cardiac bypasses and my wife was in labor, but there I was, about to have the girl of my dreams, my first child. I wanted a daughter for so long … and she was moments away, the day before my 34th birthday, this was the happiest day of my life (still is). Two hours later she is in the neonatal intensive care unit. Three days later I am told she will probably never leave there (alive). Two weeks later our pediatrician hands us the book “Surviving Pregnancy Loss,” which, in a bizarre way, was accurate. Welcome to parenthood.

My personal stand in for the Aphrodite of my dreams had a beautiful family, two girls and a boy, big house, working husband, couple of dogs, a snake, cat, and who knows what else. Then, after a typical pregnancy, another son. Not just any son, this one, like my Pearlsky, is born disabled. Now almost reaching his teens, he is still undiagnosed, severely disabled, and Aphrodite finds herself his primary, and sole, caretaker, with a bit of family help. As I well know, a life changed forever, challenging, rewarding, and maddening all at the same time.


The loss of a perfectly normal, adored fifteen-year-old son, suddenly taken by a case of bad timing, a warped human, the wrong place at the wrong time.

The loss of a perfectly normal almost six-year-old beautiful daughter, by a stroke of nature suddenly changed by magnitudes that cannot be fathomed, severely disabled and challenging those around her, as well as herself.

The loss of a twin, no longer an equal. The ever present fear of another stroke, more changes. Hopes changed and lost, the constant reminder by her sibling of what may never be. The loss of the illusion that all is good and will always be.

“Surviving Pregnancy Loss” the idea being that any pregnancy that does not end as expected is some type of loss. For at least 15 years I had wanted a daughter, was looking forward to marriage, wanting a daughter then a son, and more, but that was my dream. I imagined what life would be like, the four of us. The dreams, the hopes … the loss.

Aphrodite’s loss started with his birth. She had it all, the beautiful children, big house, husband … the American dream. Then it all changed. She rose to the challenge, as everyone in this post has, or will, doing what was right, but never having that perfect “normal” family again, lost forever.

Then there’s physics. “Nature abhors a vacuum” … “Every action has an equal and opposite reaction” …

Does a loss get offset by a gain?

Becca now fights to have laws changed. Aphrodite learned much about those around her and has risen to the occasion to better herself, and the world, with more education and then action. Claire has become a loud voice in the [Anti] Ashley debate. M is still learning the way to navigate the rough waters.

Me? I lost the opportunity for a “normal,” “typical” life, a “perfect” life. At the time of Pearlsky’s birth, I was earning an incredible amount, had a beautiful, intelligent, loving wife, great home, as was looking forward to kids to round it out. Well, I got kids. And you want to know what else I have? Pain. Confusion. Terror. Tears. Anger. Humility. Yes, I got it all. Except that “perfect” life. I would have settled for a “normal” life. I would have settled for academically failing, food allergy filled, phys ed challenged kids.

What offsets the loss? The simply amazing people in my life who entered only because of my children. Hopefully I have helped a few on the way with what I’ve learned.

These children, these events define us. We are lucky, all the benefits of Münchausen by proxy without all the weird, sick, twisted parts.

I would have survived if in fact she never did make it out of the neonatal ICU.

Maybe that bigger loss would have been better.

Nah. Mom was right.


  1. Reply

  2. Reply

  3. By lizzy


  4. By Claire


  5. By Gimky


  6. Reply

  7. Reply

  8. By Lynn


  9. By Gimky


Leave a Reply

Your email address will not be published. Required fields are marked *