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.

Physio’s headache

Samuel sees a physiotherapist and an occupational therapist about once a month. Both have known Samuel since the beginning and the girls are always very good with Samuel and seem to have a real understanding of the little man.

In the past, some physio sessions haven’t been terribly successful. Not because of Samuel’s seizures, more that he goes to sleep and proves hard to wake up. I’m not sure whether this is some kind of subconscious tactic of his to avoid the session but it can be frustrating. I’ve had to ask the girls not to give him a cuddle at the start of the session now because I’m sure this makes him extra snoozy! We’ve found that the way to wake him and keep him awake is to do tummy time with him which he doesn’t like as it means he has to put effort in.

You see, when he first started having physio sessions regularly, the girls would do very gentle movements with him and he would mainly stay on his back on the mat. But then they progressed to making him do more work, including tummy time. He doesn’t like it. He just wants to lie on the mat and be stroked!

Samuel has quite bad positioning. Where the physios would like him to lie straight and keep his head, arms and legs central, Samuel has other ideas. His favourite position is to lie head over to the right side and his body to be at an angle in a kind of banana shape, with his ankles crossed and his arms stretched out like a scarecrow!

Samuel isn’t mobile at all and it is anticipated that he may never be. But for good general physical health, it’s good for him to have good positioning. Plus our aim is to strengthen his neck and encourage him to support his head with the hope he might be able to sit up sometime down the line (at the moment he has to have full support like a very young baby).

We do quite a bit of physio with him at home and sometimes combine physio with play. I’m always finding myself moving his arms down, turning his head gently to the middle and uncrossing his legs, but that boy may have special needs and disabilities, but he knows what position he likes to relax in and is very stubborn. So if I don’t use supports (like rolled up towels, soft toys etc – not very high-tech), before long he’ll return to that position! I’m not sure if we’ll ever win the battle of Samuel’s positioning, but we love him, even if he’s our scarecrow banana boy.

New set of wheels

We picked up Sam’s new buggy on Friday, a new ‘special’ buggy. The Occupational Therapist wasn’t happy with how unsuported he was in his old one – we use to have to put in rolled up towels to try and improve his positioning – and he was growing out of it fast.

I think husband and I both felt a bit hesistant at first about it, as yes it does look a bit ‘special needs’ but that lasted about 5 minutes once we saw him in it and how well supported he is.

We took the new buggy out at the weekend but did make the mistake of picking a day when the German market was in town and it was absolutely heaving with people. I did feel extra protective of him as he seems much more exposed in his new buggy and people seemed to be walking really close to us. But we then went for a picnic in the park and set up Sam’s gastrostomy pump and we all ate al fresco. People walked past us and I did notice them looking at Samuel, but they didn’t stare in that awful way, but instead titled their head to one side and smiled. That’s Samuel’s magic, he can touch anyone’s heart.