“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.
I typed the word “beautiful” and your blog told me that my comment was a bit too short.
So: this post is beautiful.
That’s all I got.
I belief that loss and suffering are just another part of life. We’re always so eager to take the happy bits, not so eager to take the nasty bits, but they both make up life. My baby girl, she turns 18 in a few months, has brought me both joy and a depression so deep I thought I’d never survive. But we did and I’m thankful I have her in my life.
A beautiful and thought provoking post. It’s so true, I often think about loss offset by gain. You said it so well. Where would we be without the amazing people that entered our lives, only through the lives of our children?
Not all that long ago, I got a few emails to the effect that I should be happy that Marissa was alive at all. Other than being amazingly self-centered emails from people who had lost their children, with death brings at least some measure of closure.
There’s no need to minimize the suffering and grieving of others. Grief is grief.
So, less verbosely, well said!
Hardly know what to say.Speechless actually.Which for me is,shall we say,not typical.Linked over from our friend Ken and so glad I did.Looking forward to heading back into archives and soaking in more.
In a nut shell,I am the mom to six,putting one foot in front of the other,finding my way,on most days. Changed forever by the entrance of Miss Zoey to our lives.She has Down syndrome but that in fact, turned out,in many ways to be the very least of it.Her medical history allows me entry into a few different “clubs’ but more importantly, her life allows me to see the world with with perspective and gratitude that I might not otherwise have had.
When I first clicked over I was immediately drawn to you title quote.I often repeat to others one of my favorite that resonates along the same lines:”I know God will not give me anything I can’t handle.I only wish He didn’t trust me so much.”
I have long since sent Him a memo saying enough… not sure He has received it.
Thank you for allowing us in.I tell you,daily,I ponder why it is I blog and then,with one click,I see the reason with crystal clarity.Glad I clicked today.
Just yesterday, I was outside my house doing some gardening while waiting for Oscar to arrive home from school. I noticed a mother walking on the other side of the road with her 2 children one about 4yrs the other in a pushchair about 2yrs. She stopped suddenly, crossed the road and came up to me.
“Are you the mother of the little boy who comes home on the blue bus?” she asked. When I replied in the affirmative she then said;
” I was wondering how you cope. It’s just that I’ve just been told that my little girl is going to be very disabled”.
We talked for maybe 10mins. It turns out her little girl had just been diagnosed with Rett’s syndrome. I quickly surmised that she must still be in shock. I had to careful what I said, I still struggle so much with caring for Oscar and I didn’t want to be negative, nor was I going to go for the reality denying optimism approach. In the end I said something like;
” its love that gets you through. YOU NEVER STOP LOVING THEM”.
Wow. I love the comments as much as the post.