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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All we’ve ever known

I’ve been reading more of the #definenormal blog posts which are part of the Define Normal blog hop challenge at Just Bring The Chocolate. I can relate to all of them in some way and to me, they sound all very, well, normal.

And that’s the thing. I’m so used to our little world, our little bubble, that sometimes I struggle to step back and realise what isn’t perhaps the mainstream normal.

It might be because Samuel is our only child. This is our only experience of being parents & having children. This is all we know.

Samuel has always had seizures. Medicines have always been a crucial part of Samuel’s care.

Samuel has never given us eye contact. He has never smiled. Never laughed. The only time we see him smile is when he is having a seizure and boy he would have one fantastic cheeky smile. But we’ve never had that so it doesn’t feel strange. But it does make me feel sad.

We get asked if Samuel likes this or likes that. We don’t know. How do you tell if a six week baby likes something? Sam might be 17 months old but is only really like a little baby.

But that is how he has always been. This is our normal.

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I get by with a little help from my (cyber) friends

I’ve been quite surprised by how helpful and supportive I’ve found twitter and reading other people’s blogs. We’ve been plodding along in our little bubble just the three of us, only occassionally letting people in. We do have very supportive and kind friends and family, but we are so aware that they don’t really get it, as much as they really do try, they really don’t get what it is like to be in our world.

But I don’t think badly of them. Before I had Samuel I had no experience of this special world, or indeed if I had been a mother to what the world calls a ‘normal’ child then I wouldn’t truly understand what people in our shoes are going through, what they are experiencing, I mean how can you?

But I have made friends who are in our world. They really do understand what it is like in our funny little world and our thoughts and fears.

I probably shouldn’t single people out, but I really want you to know about them and to read their blogs and to find out about their story.

The first is the family of Liam the Lion. A couragous boy who has proven to be a brave little soldier in his three years. I can’t remember how I came across his dad’s blog Pressure Support, but I am so glad I did. Liam’s parents have really inspired me, have shown me that the world is still bright, the sun still shines and there is so much to enjoy regardless of what my boy can do. Regardless of his condition. I read Liam’s dad’s blog posts and I can feel so much love, so much love and pride for his boy. Liam’s dad also writes beautifully. Liam also wears really cool t-shirts.

My other new friend is H’s mum Little Mama said. She is me. She is still finding her way, trying to figure out what on earth this funny world is about. She worries about the same things as me. She’s suddenly found herself doing this job she never expected to be doing. But boy, she’s superb. What she does for both her boys, all her love, all the bloody hard work she puts in, I so admire her.

I hope that I can help people through twitter and through this blog to realise that actually our funny little world is much bigger than many people realise. And there is no reason to ever feel alone.