I like my grass brown, thank you very much.
I seem to have launched a discussion a few posts ago about comparing disabilities when I said “Autistic? Screw you. I’d kill for a kid that was autistic.” Let me take that a bit further …
I would rather be deaf than blind. I don’t think I will ever have a choice, and the exercise is academic, but the fact is, I think one is less onerous than the other. I would rather be a paraplegic than have uncontrolled epilepsy. Hence, I can “rank” disabilities. Would I rather have a child that is autistic or has an in-born error of metabolism of a certain amino acid? I can voice an opinion.
It does get much harder when there are multiple disabilities. Would I rather be deaf with epilepsy or blind and have a g-tube? Now the discussion gets a bit bizarre and I need not go further, except to say that when talking about multiple disabilities, the combinations are infinite and the comparisons are impossible.
I can also say that I would take any disability that is not genetically inheritable for my child than any one that is. Sophie, of A Moon, Worn As If It Had Been a Shell, can walk and has some forms of communication, but has many break-through seizures (and is severely disabled). Pearlsky has no communication, cannot walk, but does not really have break-through seizures much anymore. Would I trade? Again, a moot question and one not easy to answer. BUT, Sophie has two seemingly wonderful brothers, “normal” brothers. Pearlsky, alas has no “normal” sibling. That I would trade. Of that, I am jealous. I chose to marry into a gene pool that unfortunately did not match mine (actually, matched it too well). We all make mistakes … but I would greatly have preferred an non-genetic based disability. David, my son, would have preferred that as well, I am sure.
As parents of “this” population, I agree, we can’t really compare. And yes, we must support each other.
Another reason we cannot compare has a lot has to do with our own level on the universal shit-o-meter. Let’s say that due to my upbringing, beliefs, education, spirituality, experiences, etc. I can handle up to an 8 on the universal shit-o-meter. At that point I collapse into a quivering heap on the floor and need a Pearlsky-tini to continue (three parts VOX vodka, one part Valium (brand, not generic), chilled). You, on the other hand, may reach quivering-heap-on-the-floor status at a 6 on the universal shit-o-meter. Does not make you less of a person? No, just different. So, your 6 is actually equal in pain to you as my 8 is to me. Your life seems easy to me, I wonder why you can’t deal and may envy your situation where you think my life is beyond impossible, but the truth is we both feel an equivalent level of pain, we have the same level of angst.
The point? You should not feel bad that you have it easier and can’t deal, and I should not think you a wimp for not being able to deal with something I would find easy. Life is not comparable like that. Severe disabilities are not comparable. Shit is shit, though.
Yet, I can still legitimately be envious of your problems.
“You and your friends get together. Everyone puts their problems on the table. When you look at them all, you’ll take back your own.” ~ my maternal grandmother, Pearl, and boy do I miss her.
The grass may be greener, but I guess I like mine brown.
I am mom to a my 13 year old severely, disabled daughter. She’s everything as disabled as many of our kids; mentally, physically AND has a diagnosis of Autism. Now, lucky us…we’ve pretty much discovered that despite suffering hypoxia prior to her birth which caused her swiss-cheese-like holes throughout her brain, my daughter may very well have suffered from Autism despite it all. Now, how do I know this or think it might actually be true?? Well, my husband and I thought it nice to give our younger daughter a sibling who might actually smile, play and not yell at her all the time…SO (like dummies) we went ahead and had another baby. That dear little baby is now 3 years old…and AUTISTIC. She is challenging you bet…and I sometimes wonder if life would seem almost “easier” having to deal only with her Autistic behaviors vs. physically devastating issues as well…like my oldest daughter. NO WAY…BOTH kids wring me out every single day. No one more than the other. Problems are problems…they emotionally and physically devour us as parents.
I’m laughing my behind off at this post, particularly the paragraph with the universal shit-o-meter. Oh, my goodness — bless your dear heart, Single Dad. If I didn’t laugh — at the opportune moments and the inopportune — I’d probably kill myself. I know, too, that some earnest soul is going to object to this post and admonish you or clarify something or other, but I say bravo.
Now I am pissed. you lied to me a awhile back. And I quote:
Morphine-tini? 3 parts vodka, 1 part morphine …
Now I am all confused. But maybe that is from the cocktail I am currently taking: Vanco, Keflex, Batrim and Vicodin. What shall we call that?
As a mom of a child with multiple disabilities, I am definitely jealous of others who ‘just’ got an extra 21 and nothing else. I honestly struggle with it and I do compare.
I guess I am a sucky human being. Or again, maybe it is the meds.
I know what you mean and I often feel as you do. My son is missing part of his brain, has breakthrough seizures every day and at almost 18months is basically like a 6 week old baby. His condition is genetic. I’m a carrier and will more than likely pass it on again to more children. In fact I narrowly missed out on myself having learning difficulties or be as worse as my son. My body actually did me a favour that time! But I find it hard talking to other special needs parents whose children, well I’d give every limb of mine for my son to have their condition. They say they understand how it is for us but their child is nothing like our boy, they don’t have a crapy life expectancy hanging over their heads to haunt them. Feeling like this may make me a bad person but I have enough crap, enough guilt to punish me for rest of my life.
Dammit, you don’t have to do this shit SOBER? I truly am an idiot. My daughter has late infantile Batten disease, took forever to diagnose, no cure, always fatal. Envy I am guilty of, all the time. Shit-o-meter, can’t even look at it, it must be off the scale, I’m still functioning, going to work, even get a laugh in here or there. I do fully expect to wake up one day in one of our states finer mental treatment centers (i have good insurance). I don’t know about your Grandma, down syndrome looks pretty good from here, but I never was much of a card player.
Of course, you are damn right! There is a spectrum of disability. Just because you claim disability does not mean that you can equate a quirky personality to a non-verbal, non ambulatory child. And, of course, every parent of a disabled child has a different level of resilience. I would rather have a cavity filled than have a heart transplant…there is a continuum in every aspect of life…sometimes we end up on the extreme end and wish we were elsewhere.
At the other end of the scale (and I’m not even sure if its technically a disability) a friends son has schizophrenia, and I can tell that scores highly on the shitometer. Knowing what I know of their situation theres NO WAY I’d ever trade my NV Autie for that.
But I wonder if she looks at my boy and thinks “At least my son can talk”?
Your Grandma sounds like a wonderful wise person.
I understand where you’re coming from. Sometimes its difficult to admit that we feel this way.
Thanks, SD, for your perspective and wisdom. I am grateful to have even a tiny inkling of what you and others go through daily–maybe it will keep my ignorant mouth SHUT rather than say something that hurts a parent of a disabled kid.
BTW, Helen Keller, who had an informed perspective on deafness and blindness, said “blindness separates you from things; deafness separates you from people.” Apparently she felt as you do on the issue.
Well I think the crux of this is the ability to look at the shitometer and appreciate that someone’s six = someelses eight.. or nine or wherever.
I have had my “normal children” and my “normal kid” who is now severely disabled (an array of complications..) due an near drowning and resulting hypoxic brain injury.
His accident has introduced me, through many hospital stays and the work we do, to MANY families with kids with all sorts of disabilities, and this has sometimes been the discussion between parents of kids with various disabilities… inevitably this always come back to essentially what you describe as the “shitometer”…
We all fall somewhere along it, and at multiple points on it at various points in time… the commonality is we are all on it.. and consequently it is SHIT… it’s just the depth (or the number) that varies…
Welcome to Shitsville….
Weeds. You can have yours brown, I’ll keep my weeds. Brilliant post.
Single dad all I can say is AMEN! I agreed with and understood your previous post. I agree more now (is that possible). I am emotionally drained after being in the hospital a week after my girls13th birthday truely thinking that she was not going to make it to the ER let alone come home. Thankfully she did but I am envious of the 5 on the shit o meter,mine is perpetually stuck on 8.5 this weeks 10 left a toll on this family.
It’s comforting to know that there are others out in cyber space that view the world the same way.
By the way market your drink maybe you could make 100million dollars like the skinny girl cocktail did!
Unfortunately, what if you know you are a 6 and you want to be an 8? What if you know your limitations but you know someone who deals with it better? What if you just simply want to be a 10 and claw, scratch, and gnash at it but cannot, no matter what, get past that 6? How do forgive yourself? And you know what, people can be angry with me, but I wonder what is wrong with those people that are merely 5’s and I kinda hate those people who I see as better than my 6.
Most of my family and friends know their grass is greener. Although, one person did have the nerve to ask me if Hannah just sits in her chair all day. I asked this person if they want to come over on any given day and spend some “quality” time. I can understand a parent with a severely autistic child thinking maybe they have it a little harder, but a person with three healthy, young children gave me the “what’s so hard about caring for Hannah” business. I quit explaining our daily grind to people like this. It’s not worth it, and those types of people may be what get me sent to a funny farm.
Reading comments on the internet can be a little like kicking over a rotten log and watching as a swarm of strange-looking critters walk, crawl and writhe out, with pincers flailing and mandibles clicking angrily.
Every one has a (metaphorical) axe to grind and every one is mad as hell at having their log overturned.
That was really well written. I laughed my butt off at the shit-o-meter. Your Grandmother was a wise woman. Brown grass can be nice.. You don’t have to water right?
Past SD one more mention on your blog,and I think I’ll need a byline.
Kandee, I’m not sure I understand your comment. What if someone wants their level to be worse than it is? I want to know how to respond 🙂
I wish I could do more for my severely disabled child emotionally, financially, and with pure brute strength and activism than I am currently capable of doing. I am a 6 and I know it. It makes me feel awful. I want to be a 10 and fight for better social awareness, financially fund medical advancements in either diagnosis, treatment, or for services. I want to be a better person than I perceive myself to be. And when I see other parents doing these things, and, seemingly, with a better emotional stability than I have, I find it depressing.
You don’t have to respond. It’s a hypothetical question. I am simply saying that just because my level 6 pain is equal to SD’s level 8 pain level in his mind, it is not the same in my mind. I am jealous of his ability to handle more.
Kandee, I understand now 🙂
I can understand that feeling. I don’t have the ability to do more than I am either. I educate myself, and love my child. The shit-o-meter seems to get filled by the universe, not our actions. If you ever have angst about your level on the shit-o-meter, I would say you are higher than you think you are.
I’m not always like that, thinking I should do more, think more, advocate more etc, but sometimes I do. Sometimes acceptance is easier than others.
You are reading here, thinking about these things, commenting. Sounds like you are doing a lot better than you think you are 🙂 You also sound really strong to me.
Kandee and others: My daughter with extra-special healthcare needs is seventeen years old, and since she was diagnosed at three months, it’s been a very long haul. I find that the Shit-O-Meter has moved quite a bit over the years — all over the place, actually, as I’ve flamed up, burned productively for a while and then flamed out. Inevitably, something sparks me to begin again, and I’m reminded that nothing is permanent, not even despair. I think it’s fluid — I was a founder in my early days of a non-profit that raised millions of dollars in research for epilepsy and then fifteen years later, I quit as a board member of the Epilepsy Foundation because I was tired of it all. I’m currently tired of it all, weary of fixing anything and content to sit on the sidelines and rant and rave and cheer for those doing the heavy stuff.
You see, the Aria-tini requires no booze to knock one on their ass. 2 part phenobarb, 1 part morphine with a twist of valium.
All I have to add is that your child stays where you leave her bc she’s wheelchair bound and you can find a nanny. That seems a lot easier to me than a child who runs away at every opportunity & is physically aggressive to others so much so that nobody will babysit.