“Heaven better be awesome” ~Kitz
Occasionally the topic of the severely disabled and abortion comes up here. We will NOT have any real discussion on it though. There was this post surrounding an email I received a few months back. Yesterday, a comment was added to the thread, this comment.
It is obvious that the commenter, Kitz, and I, come from different backgrounds. That is moot though.
The two topics are so heavily emotional in many ways. Leaving all spirituality out of it (impossible but I am SingleDad and I can do anything), when one looks at the severely disabled, when one lives with the severely disabled, cares for the severely disabled, shares DNA with the severely disabled, you find your world overwhelming. Emotions range from adoration to sheer terror. A close friend of mine used to define his big city policeman job, as 96% boredom and 4% terror. If he only knew. Unless you live it, you don’t know. Pearlsky is my world, totally and absolutely. Of course there is room, desire, for others, those others can have my love, fun, my hopes, my dreams, my ambitions, but I don’t need them sharing in my fears, my pain, the hassles. Life is tough enough. Pearlsky and David (who turned 18 yesterday) suck out of me the problem solving, the worrying, the pain and fears that live in my soul. (oops, bordering on spirituality, I don’t mean “soul” as in “soul” I mean “soul” as in that nebulous squishy grey thing that some say I have between my ears) All the crap in my life is wound up around them, should not the rest be easy?
Knowing within you is a new life, a life to join yours that will do this to you is confusing, scary, and let’s face it, not fair. Facing a choice that some say is wrong and will damn you to hell and others say is a natural choice and is okay just adds to the pain, fear, and confusion of life. Are you a martyr to bring someone so dependent into the world and sacrifice so much of yours? Yes, of course there are tremendously great things that come with these children, but is the balance as it should be? Who is to say? Is there a judge? A True Judge? Would I choose “another” Pearlsky or David if faced with the choice? I do not even comprehend the choice; I have never experienced a “normal” child.
We live with our choices. We try to do the best with what we have at the moment. Sometimes we choose correctly, sometimes not, but in actuality we never know if we made the right choice.
I have said many times, and it is as honest as I can be, that the one thing that scares me more than anything, more than my own death, is meeting Pearlsky in heaven where she will be able to talk.
I end this post with the last sentence that Kitz wrote in her comment yesterday …
Heaven better be awesome.
(political type comments will be removed)
I am certainly no expert in this scenario. As, I do not have disabled children, I don’t even have children. However, I have lived my own life, I’ve been a child. I know what horrors I’ve put my parents through. I am mentally ill, some say severely. This being the case, knowing and seeing what the adults in my life dealt with. The fear, the exhaustion, the anger, the hurt… and after reading all you’ve written, dare I say, I believe your children must admire you and appreciate you immensely every single day. You are their entire world, it sounds like. What you may not be realizing is, in their reality, this is the best it could possibly get for them. i doubt they need Heaven (but what do I know?) but what you have given them and the love you’ve shown them has been more than any God could provide 🙂
“i doubt they need Heaven (but what do I know?) but what you have given them and the love you’ve shown them has been more than any God could provide”. Amen to that.
I haven’t commented on any of these posts that discuss sometimes the real decisions and sometimes the hypothetical ones. I haven’t commented because I don’t think there are any answers at all — right, wrong, black, white — not even grey. I think it’s all impossible. I think that’s why we have art, actually, to express the impossible and help us to bear it. In my personal experience caring for a severely disabled child, I have grown quite adept living with the questions and not knowing the answers. Ever.
In my personal experience caring for a severely disabled child, I have grown quite adept living with the questions and not knowing the answers. Ever.
–One of the best comments ever left. I am hoping one day to achieve this kind of ability. Right now I can’t live with it. Thus, daily struggle is all-consuming.
I am not in your shoes. I do not want to invalidate your fears or concerns. And I have not met Pearlsky. But, for what it is worth, I believe that when you meet Pearsky in heaven, the two of you will have a wonderful time reminiscing about all the idiots that both of you have had to deal with. Not a single one of her salty, sarcastic, or cynical remarks will be directed at you. I can just picture her wicked sense of humor given voice sharing her observations with you.
It was suggested to us when we found out Patricia was pregnant with triplets, that we should perform “selective reduction”. Essentially abort one fetus so the other two have a better chance of being healthy. We chose not to do this and one of our children does have moderate cerebral palsy. This choice was made without knowing if one or more child would have issues, or if all three would be perfectly fine. I cannot imagine making this choice knowing that your child will very likely have severe problems. It seems an impossible choice to make. I would hope that when you meet Pearlsky in heaven she will love you for the choices you made.
I might get some hate for this comment – perhaps I even deserve some – but here goes, in the interests of honesty.
What if Pearlsky DOESN’T TALK in heaven? What if, as far as Pearlsky is concerned, her body is whole and perfect and fits her soul as a glove to a hand, and so there is nothing to change when she goes to her eternal reward?
Now, I’m an atheist; I don’t believe in heaven at all. But I do believe that this body – complete with dystonia, tube-feeding, long-term catheterisation, need for hoist transfers, powerchair and all the rest – is MY body, the only one I have, and I find the idea that someone might wish for me to have a different one deeply creepy. I can’t separate my identity, my sense of self, from this body. There are perhaps some unpleasant sensations I’d happily see the back of – pain essentially sucks and whoever said that it’s good cos then you know you’re alive is an idiot – but in the most part, I am what I am.
Just some food for thought.
Let me clarify. It is more a metaphor for what my actual fear is, that is, knowing Pearlsky’s point of view, her understanding or feelings towards me. I don’t know if there is a heaven (but if there is, it sure better be awesome), nor do I know if we are there in our bodies, angelic perfect bodies, just our souls, or whatever. Also, I do not wish for her to be different, to paraphrase you, she is who she is. And I love and adore her as she is.
I just fear her unspoken, unheard thoughts, that is all. And, my horrendous belief that I will never learn them in this life leads me to fear learning them in some other.
SD, forgive me. I should have known there would be a little more to it.
I’d actually be quite surprised if you reached the end of your natural lifespan *without* some form of assisted communication technology being accessible to Pearlsky – we’ve moved from the fMRI to neuro switching (the latter being now a usable day-to-day tool for those lucky enough to have access to it) and the progress isn’t slowing down.
I know that’s not really answering your what-if, but it does exist in a context of progress steadily towards that belief being extinguished.
I hope you and P are well – and many happy returns to David!