What colour is your grass?

Is your grass greener than mine? Probably.

I was catching up on blog posts and came across the latest post by Single Dad/Disabled Daughter. The post was called ‘I like my grass brown, thank you very much..’ and he talks about comparing disabilities and looking at how he’d rather his children had less painful, less limiting conditions than they do. He has two children Pearlsky and David, I think both are in their teens and both have extremely life limiting (as in they cannot do anything for themselves) conditions with a bit of epilepsy thrown in for good measure. I may have just done his children a total disservice by not explaining their conditions properly and in detail, so if you want to find out more than have a look at his blog.

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.

Reading through his blog post I totally understood what he was saying. It might not be the right thing to say, but I completely understood. I’m in contact with a lot fantastic parents of children with a diverse range of special needs and disabilities. I read and hear about their problems and difficulties and while I feel sorry for what the child has to go through and for the parent who has to care for them and worry about them, I do harbour this secret feeling that I would give everything I own, every limb of mine for Samuel to have their condition.

Samuel also has a genetic condition, actually to be pedantic, I too have a genetic condition, but Mother Nature decided that I should escape symptoms, but pass them on to my children.

I don’t want those parents to feel guilty that their children in a bizarre way may be ‘better off’ than Samuel. They’ve got a better deal than we have. And I hope that the parents will understand that in no way is my intention to undermine or belittle their child’s condition and the problems that go with it.

But I can’t help feeling the way I do. Samuel doesn’t and will probably never smile, laugh, give eye contact, sit up, walk, doesn’t acknowledge us, cannot eat orally, doesn’t communicate, has daily breakthrough seizures…I’m sure if we were able to do deals, I’d easily find someone who would have a much better condition to have, but would anyone want to trade for what Samuel has? I doubt it.  But this is the hand we’ve been dealt and yes, we may have been dealt a much harder hand than you. But as Disabled Dad says, shit is still shit, whichever way you look at it.

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6 thoughts on “What colour is your grass?

  1. A very brave post. A clear insight into how you are feeling but probably often worried about saying.
    . I can understand where you are coming from but as the blog quote sats shit is indeed shit.
    Much love and hugs x

  2. Another great post. I often feel, not guilty exactly, but very aware that i have it easier when I’m complaining about what I have to go through with my son, yes I have it harder than parents of “normal” children, but I know that I’m very lucky that my sons disabilities are linked to learning, communication and minor motor skills things. He doesn’t have severe physical limitations like many other children with genetic conditions. Yet I still compare though, I’d rather we had a name for his condition, I look at his friends with higher functioning autism and think they have it easier than us. Thank you for sharing this. I think it goes through all parents heads to some extent, but we rarely acknowledge it. And thanks also for pointing me to a new blog I haven’t read before. x

  3. Pingback: Love All Blogs » the altruistic blogging network and showcasing site that welcomes all bloggers » What colour is your grass?

  4. Great post, thanks for writing it Zoe. I am probably guilty of thinking very similar things to lexilil above me and hope that I have never inadvertently caused upset by any of my blog posts 😦 hugs x

  5. Needless to say, great post!

    There is some solace in knowing that one is not alone with thoughts that may be considered wrong or inappropriate, or whatever. This is a tough club to be in, don’t feel bad about your feelings or doubt them. Just know, you ain’t the only one …

  6. You are completely and totally justified in feeling that way. ((hug)) I hesitated greatly in commenting when I recently found your blog because I know the challenges you face with your little one are so much more than what I face. I see only bravery in acknowledging that truth and love in your thoughts on the subject. ~Sasha

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