It makes you or it breaks you
First, those of you who leave comments will notice a slight change. You can now leave a comment for an already existing comment, and they will “nest.” In other words, if you want to respond to a specific comment that has been left, you can! You will see a “reply” link associated with each comment. Of course, you can leave a comment to me, or a general one, as before.
And now to the point of the post …
I’ve been thinking a lot lately about this whole having-a-disabled-kid-or-two thing. Gotta tell you, it sucks. Some of us got into this wonderful situation at the birth of our child (well, probably at conception, but I ain’t going there). Others of us were thrown into it as we watched our wonderful perfect child … change. I still don’t get how He can stroke out a beautiful young six year old girl (or two, and that’s just the one’s I know), but who am I to question? How a twelve year old young man can suffer seizures and seemingly have the mind of a six month old. Why those beautiful young ladies in southern California are not enjoying their childhood, but dealing with seizures, snot, and more. I don’t get it and it sucks.
And where does it leave us? Many of us have marriages in shambles, that is, if we still have marriages. There is a lot of resentment among spouses, for too many reasons to even start in this post (a subject I do want to write about). Many of us find solace in our blogs, or reading other’s blogs, learning, contributing, commiserating, or just saying “thank God that ain’t me.” We sometimes email each other and say “Hey, did you see that stupid post Single Dad just wrote” as a way of connecting.
I must say we do have a bond, somehow. Some of us have very different views on things, very. But yet, we are bonded in this low level of hell. Oops, I mean Holland.
But we continue, we go on. “What choice do we have?” You know by now my mother’s answer to that … “You can either do it right, or you can fuck it up.”
That goes for our own lives as well. We can rise to the occasion, or fall flat. We can curse God and wish we were dead, or we can do our best and curse God and wish we were dead. But that choice is ours. We can blame everyone else for all of our problems, we can blame all the problems on our kid, or the cause of the disability (if, in fact we know it) (and we rarely do), or we can go on and deal. Life is tough. Life with a severely disabled kid is tough. Is it tougher? Does it make us tougher?
We come into this situation from all different places. Some of us are fathers, some are mothers. Some of us are more educated than others, some are even better looking than I (or is it me?). Some of us are generally happy. Others are holding on tight and losing their grip. Some of us see the situation for what it is … and others think that we are mere projections in a dream world.
Scott recently left this comment (take a look if you have not seen it), he obviously has it tough. But so does everyone on my (way too short) blogroll on the right, so do I, so do you.
This is not where I was going with the post … but I’m posting it anyway. And I am stopping here. Go ahead, comment. I dare you.
“It makes you or it breaks you” sayeth the beautiful Aphrodite over her morning bacon and eggs …
wow..my ears were burning 🙂 Just chatting with my cuzzin whose brother has been living this life as well for some time. Now remarried – he cares for his daughter half time. Her name is Isabel (Izzy for short as well..?)
Not sure which way is worth weighing in on re: delivered with or into this whackiness..but for me personally I have felt guilt over the decision to give Kirk his shot. Play a lot of woulda coulda games in my head for quite some time. If you believe it was a matter of fate or God’s will is it less painful to accept than I did this to my son…?
Been a really tough week or two..really waffling on feelings of resentment, anger, and as always gratitude…so many emotions. Funny your quote above regarding our plates..I really had come to hate that saying. People use it when they don’t have anything else to say..shit happens thats seems to be it. The greatest fear that trumps all others in this experience, has been that feeling that no one is in charge. My God would never harm a child..so that must mean he/she/it can’t affect many of the things I used to count on to keep me and mine safe.
You’re right SD. You have a list of amazing humans here…so very grateful for your kind words and encouragement. Guess the newbie will shut his pie-hole for a bit. Thanks for listening 🙂
Wow I wish I could get my blog to do the thing you can get yours to do. (That did not come out the way I wanted it to.)
This new editing tool is also pretty nifty. Weeeeeeeee!!!
Oh and hey Scott…but I already said hey before…forgive me. I lost my mind a while back now I just play in the sandbox.
Ken, most of the things S.D. has does stuff the rest of us can’t do.
HEY!!! The new editing tool also does not work properly.
Scott: “The greatest fear that trumps all others in this experience, has been that feeling that no one is in charge.” Actually, Scott, YOU are in charge. You have a choice as to how you are going to live life: guilty, angry, depressed, or not. It’s the fundamental truth for all of us. No one will save us from our lives, if indeed, we need saving…
I just translated Ken’s comment into ‘shqipe’ language – whatever that is. Here’s what it looks like:
Wow Unë kam dëshirë mund të merrni blogun tim për të bërë gjënë që ju mund të merrni tuajat për të bërë. (Kjo nuk ka ardhur nga rruga kam kërkuar atë për të.)
Ky redaktimi mjet të ri është edhe goxha i mrekullueshëm. Weeeeeeeee!
Oh dhe hej Scott … por kam thënë tashmë hej para … më fal mua. Kam humbur mendjen time një kohë prapa tani unë vetëm të luajë në sandbox.
Wow. We have some the same words in English!
I’ve always wanted to do that – translate. I might try the ‘Reply’ next time. Well after SD gets it working ‘properly’.
I think you are better looking than Ken, too, SD. For the record.
Aw, shit.
My feelings regarding my daughter’s disability (which often affects my entire outlook on life) changes drastically from day to day. Some days I feel profoundly blessed(?)to have learned so much about who I am and what I am able to accomplish and withstand as a result of being Phine’s mom. I also consider myself pretty good at “not sweating the small stuff” as a result of being her mom, which allows for me to not get wrapped up in meaningless bullshit and maybe be more free.
For as many days that I feel accomplished and at peace, there are just as many that I am completely angry and a total fucking resentful mess. I am generally angry at God, myself, my daughter’s illness…bla, bla.
It’s about half and half depending on circumstances with the kid or my hormones…
My daughter became disabled at 3 and her illness is rare and ever changing. It’s autoimmune and involves the brain. There have been years when I thought she might live somewhat of a normal life, then she’ll relapse and lose a whole bunch of function. Then she’ll get better and may or may not regain the function that she lost. There is no definitive answer on what will happen. There have been many disappointments and I’m sure more to come.
I often wonder if her disability was consistent and I was told what to expect, if the way that I feel about it on a day to day basis would also be more consistent.
I read your blog and others written by parents of disabled kids because I feel as though I can in some (and often many) ways relate. It feels better knowing I’m not alone in my experience. I also learn a lot from other’s experiences and the ways in which you handle them.
I think the Goddess summed it up pretty well.
Sometimes I agree with Thomas Hobbes about the “nasty, brutish and short” thing. Other times I am absolutely thrilled and elated just to be drawing breath. Either way, we can’t do much about it other than to off ourselves (and you know what a certain moody, broody Danish prince had to say about that.)
I personally go for the life is very brief and eternity is, well, eternal. Also reincarnation. I’m big on reincarnation, but I have yet to determine whether we’re being punished or rewarded for our past lives’ deeds or if it’s all a cosmic crapshoot.
However, I sincerely doubt I would be so cheery and complacent if I were caring for a severely disable child.