I want what they’re smoking
The day after Pearlsky was born was devastating. Period. She was born around four in the afternoon, in the NICU (neonatal intensive care unit) by six, but no panic buttons were yet pushed. That was the next day.
The week is a blur. We were told Pearlsky would never leave the NICU. I did what I had to do, supported Pearlsky’s mom, dealt with other side issues (Dad’s five bypasses the same day), and made it home with my daughter. I spent a week or two mourning, yes mourning, the daughter that I did not get, a week or two to get over the shock, the loss, the confusion. And then I rallied, got my shit together, and never looked back.
When David was born, and when we discovered he had the same issues, it was, in comparison, easy. I knew nothing else. I did not know what a normal kid was all about. I got what I knew, and heck, that’s always easier to deal with, no?
Do you remember the shock? Either around the birth, or later in the emergency room after the stroke, or the week of the first infintile spasms, that first seizure (or, more ominously, the second)? Remember that doctor, the look in her eyes, knowing that he or she is holding back tears telling you that she has no clue what you can expect?
How did you act? How did you deal?
I am tempted to say we all deal differently, but I suspect there are more similarities than differences.
Some deal with it with tremendous grace. I don’t know about you, but I want whatever it is he or she is smoking.
(I am not sure “grace” is the right word, but then, I am not sure what is.)
Only a week or two?
I’m not quite sure when I stopped grieving; but I think it was at least a few months long of mourning. Not that I didn’t attend to the daughter I had, but it wasn’t faced quite so quickly. I remember thinking at the time that I wished I had the spirit to fall in love with my child and the diagnosis as quickly and as cheerfully as other internet parents seemed to.
In the sixteen years I’ve been doing this, I’ve never met anyone who dealt with that first thing with “grace.” What does that even mean? The first chapter of my book is called “Diagnosis” and the details are etched in my brain forever and ever. There were not tears in the residents’ eyes who gave me the diagnosis — they were cheerful and upbeat, their attitudes incongruous with the news they let loose.
In my case the facts came to light over a period of years, not minutes or hours. It was like ripping a bandaid off very slowly. So grieving came in small increments. But very managable increments, little pieces at a time. And inbetween each increment I had a breather. To this day there is no diagnosis, so no one has been able to give me a crystal ball to her future(or lack of one). There are no preconceived ideas of what she can or cannot do.
It is all a big unknown. I think it will all hit me fully the day she dies. That is when I will have to deal. Hopefully with grace.
Like Lesley, I wander no diagnosis territory, but from the second there was an inkling of things going wrong, 30 years ago, aspects of sorrow, despair, panic and bewilderment have never left me; they shape-shift, move in and out of sight, hover. My love is constant; equanimity, not so much. Aria chose her family most wisely.
While I would have hoped for grace, I went to denial. His stroke was sudden, massive and completely unexpected. Despite the fact that he was screaming and writhing in pain, while projectile vomitting for an hour before losing conciousness, it was just a migraine. When all of the ER doctors and nurses look at you in pity, I knew that it was bad. When the words “massive cerebral hemorrhage” were uttered, I went into “fight” mode, focusing on everything that had to be done to keep him alive. Almost two years later, I still feel that I in “fight” mode and strive for the grace that others seem to have.
I’m not sure I’ve moved past the bridge between denial and grief. I function, I take care of my kids, but the grief of what shoulda/coulda been is an ever-present aura in my life.
I had the strong urge to pick Monkey up from the hospital bed and run away with him when the grim – faced doctor who diagnosed him told me about the stroke. There was definitely nothing graceful about my initial reaction or the year – long bout of severe depression caused by maternal guilt that followed.
Grieving took me much longer than a week or two. In fact, I don’t think I’ve ever completely stopped. I’ve settled into my own version of “normal” and spend far more time being happy with what I have than crying for what I do not. Still, I think it will always sting when I think about what should have been.
As for dealing with the diagnosis of the second child, I think I get it. My husband and I joked when I was pregnant with our second that we weren’t going to know what to do with ourselves if we ended up with a “normal” baby. He’s only six weeks old now, but all I can say is that it’s a whole new ball game.
Then again, Monkey didn’t become a stroke survivor until he was 10 months old, so you never know what could be lurking in the shadows. We’ll deal with any other diagnoses when and if we get to them, I suppose.
My son is 6 years old and we still have no diagnosis. I was not one of the moms that instantly fell in love with him when he was born. My reaction, and I hate myself for this, was rejection. I wanted to run. And run far away. I still have a lot of anger about things that were said to us and things that happened shortly after my son’s birth and while he was in the NICU. When the nurse handed my son to me she said, “He has his own unique look” [read: he doesn’t look normal] and when they took my son to the NICU and my husband inquired about his club feet, the nurse told him flatly, “those are the least of his problems”. When the attending NICU doctor talked to us about his problems, she said it wasn’t “genetic”. I remember thinking, well what the hell does that mean? Something is different about him, isn’t that genes and DNA and all that? And I remember her just sitting, staring at me. Watching my reaction to see if I was normal. Anyway, I didn’t deal with it well. I got by. I still get by. I still grieve the loss of the son I will never have to this day, though it is not as intense these days and my bouts of sadness seem to come less often.
Like Laurie, I too wished that I had the spirit to fall instantly in love with my son and be happy. And like Erin, I continue to live in the netherworld of what “coulda/shoulda” been…
I think we were *fortunate* enough to know most of the problems our child was going to have before birth (well, we knew everything except the blindness, deafness, jacked up liver, and dislocated hips) so we had time to prepare for the shit sandwich that is currently our life. Also we slowly found out about Aria’s problems starting at around 22 weeks gestation so we got to emotionally process each issue individually (finding out about a couple of issues each week or so instead of all at once). I think the ability to prepare has really helped us to handle this thing with “grace”.
Of course, we aren’t smoking anything. We just drink. A lot. Also, I am currently high on spa services.