Some things are tough
Sometimes the stars align to smack you up side the head.
I have been thinking about the post that Ken has encouraged … talking about what it is like living with, and how I handle, the fact that Pearlsky has no communication at all and thus I have no feedback, never been told she loves me (assuming she does), etc. I have touched on it before and will elaborate. There is the realization one gets more feedback from a dog than I get from Pearlsky. Hell, I’ve had goldfish that come to me when I feed them.
I’ve been working on that post, doing a lot of thinking, and then I read this article (reproduced here) titled “When I die, so does my dog: Some pet owners take animals to their graves.” You may remember my thoughts on not wanting to die alone and my fears as to what will happen to Pearlsky if I die first.
Don’t go all crazy on me. No, I am not comparing Pearlsky with a dog. How could I? Dogs show affection. Dogs learn. Dogs communicate. Dogs interact.
Don’t make me wish I turned comments off on this post. You know I adore Pearlsky.
I love your honesty.
When my daughter was born, she could only move her eyebrows. She raised them as if she was trying to open her eyes. But there was nothing else there for the longest time. By the time I finally brought her home, she could move randomly and open her eyes and do some small movements; things I don’t even remember anymore.
When I read your blog I really have a lot of admiration for you continuing the fight without the feedback that often makes it worth it as a parent to continue giving 100% consistently. It was extremely difficult for me, and I knew that my daughter would move “someday” and would speak “someday” and could maybe know who I am “someday”. But living in the now was excruciating because she had no reaction to me whatsoever. She didn’t even make noise, other than her breathing and reflux issues.
So, although I can’t possibly know what you feel, I certainly can imagine myself in your place and “get” what you are saying.
I remember the time when Sophie was unable to talk for some time after the stroke. “I wish she could talk”. Then, she spoke, which was basically mimicking what she heard. “I wish she could say yes or no accurately”. Then it was “I want her to have more expressive language skills”, then it was “I wish she would hold a presentation of her doctoral dissertation for me in our living room.” I can’t compare my situation to yours and I’m not trying to. It’s just funny that it’s never enough, even when you have it.
I opened Pandora’s Box in your head a little, and I didn’t mean to. I did in my own as well, and in my wife’s, which makes me feel even worse. Though I think that Jen and I needed to start discussing this, there was a grimness to what we were talking about the other day that was hard for both of us…as we discussed possible scenarios.
Essentially what we have to do is figure out a way to stop. To maybe live with only 1/5th of an eye on the distant future, and distribute the rest around, with most on MAYBE the week ahead.
In one sense, Bennett is lucky, he has a ‘typical’ sibling. But would he step up if Jen and I died? I don’t know.
But I do get where you are coming from.
Celebrating the little things and not looking too far in advance. Just those two things spare me from having a nervous breakdown time and time again. And, I might add, it’s a lot less stressful for the rest of the family when I can calm down and look forward with some reasoned hope, which has only happened because we are 5 years into this.
Kenneth, have you ever read “Welcome to Holland”? It’s somewhere on the internet. I didn’t take offense when someone first forwarded it to me when we first found out about my son and actually thought it was a beautiful perspective. Later, I read “Holland Schmolland” which was interesting to me because it was neither as delusional as I came to view Welcome to Holland to be nor emotionally unbalanced despite being brutally honest and harsh in ways. It showed me it takes time to come to some sort of healthy acceptance/ perspective. Doesn’t mean that you don’t worry or that you’re giving up or that the sadness doesn’t flare up now and again, but I think before anyone finds a sort of peace with regard to their children’s struggle/challenges, they first must go through a sort of emotional hell in learning to live with uncertainties and disappointment. If I may be so bold to say, Kenneth, you’re well on your way! 🙂 (Not to make light of your experience at all, just to offer support in saying that you are not alone!)
Single Dad! Congratulations on making the Best Mommy Bloggers list!
I’ve mentioned my grandma before in the comments, she was very ill about 25 years ago and nearly died. Ever since she’s been in weak health, needing lots of support, which was mostly given by my grandfather. In the past decades my mom has often thought “I wish they would go together, when it’s their time”. Cause if either one dies, the other will only be half a person.
With you and Pearsly your bond is even stronger, the dependancy, at least from her side, so intense nothing else will be able to replace that. I would be surprised if you’d never thought about it, tbh.
And she loves you. Some of Pearlsky’s reactions you’ve blogged about are very obvious, even if she can’t say the words.
Though I guess it’s as Claire says, it will never be enough.