Gene has a special grin that he reserves for when he is scooped up and carried some place. I call it his Prince of the World grin. Gene has Down Syndrome and Autism but he can walk. He can actually walk quite quickly, flapping his little hands in autistic excitement when he's somewhere fun like the beach or the shopping centre. But he prefers to be carried. Of course, he should be carried everywhere. He is, afterall, the Prince of the World.
Dale, his big brother, happily holds Gene's hand while they walk along if that's what Gene wants. Or he lets Gene run ahead and pretends to chase him if that's what Gene wants. Whatever the Prince of the World wants is okay with his Faithful Retainer.
My two sons. One the Prince of the World, the other his Faithful Retainer. How they came to find their roles in this world is likely all my fault. Firstly, I've totally spoiled, pampered and in all ways indulged His Royal Highness since his arrival. What else do you do when charged with caring for an angel? Defy God? Nope, not me. I'm not nearly brave enough for that. His therapists and teachers smile at me indulgently and turn away to roll their eyes as I confirm that he may do things for them (like feed himself, climb the play gym, and sit still when he's told) but he never does them for me. Why should he? He's the Prince of the bloody World for goodness sake!
Secondly, the big brother simply had to help out right from the start. For a year and a half I spent the major part of every 24 hours sitting down with Gene firmly clamped to either one of my bosoms. I wasn't the kind of breast-feeder who could hold the slurping bub in one arm and cook a three course meal, iron seventeen shirts and conduct corporate take-over negotiations with the other. (And I really hate the women who can do that by the way. I've never considered myself above experiencing good healthy envy.)
No, I was dealing with the combined factors of his floppiness, his slowness to feed, my weak back and the general malaise I suffered while waiting for my blood-count to return to something close to normal following some postnatal complications. So during breast-feeding I was trapped in a seated position with pillows behind me, more pillows under him and a couple under my feet. Dale was my lifeline to the rest of the house. Although only four years old he was big enough to run and get me what I needed. The phone, a drink of water, a fresh nappy, the baby wipes, that thing. "Get the thing, no not that thing, the other thing. FOR GOD'S SAKE GET IT NOW!!"
So Dale learned to help me. He learned that toys couldn't be left lying around the floor in case I tripped over them while carrying the baby. He learned that I couldn't bend over to pick things up too often, so he had to do that for me. He learned to read my mind and get what I really needed, not what I said I needed, because for years I was too tired to make much sense. (shaddup.. I know, I know...)
Dale had loved babies from the time he was two and we holidayed down south where he met his three-month-old cousin Nicholas. He returned from this trip excitedly referring to every baby he saw as 'my baby Mick!' So I bought him a baby doll and the infatuation continued. When he was four and learned he was getting a real baby of his own he was thrilled. But I thought it best to prepare him, in the months leading up to Gene's arrival, that his baby brother wasn't going to be like other babies in some ways. I explained how he would grow up more slowly than other babies, he might even look a little weird but of course we would love him anyway. The usual palaver one puts on in these circumstances.
When Gene arrived he was far healthier than I'd had any right to expect. He was big and bonny, and suffered from none of the physical complications a lot of babies with Down Syndrome have. And his appearance wasn't typically 'downsy'. (I remember being out at the shops when he was only a few weeks old. With his jet black hair and slightly jaundiced skin, a stranger commented to me how beautiful he was and asked, 'Is his father Chinese?" I smiled sweetly and said, "Mongolian actually." hehe) But Gene does have two conjoined toes. Now, either Dale hadn't understood much of my 'special' baby lectures, or perhaps the weeks with Gene being nothing but a typical baby made him forget them, but I realised he wasn't quite with the programme the day we went to our first physio appointment when Gene was six weeks old. I was prattling to Dale how this lady was going to show us ways to help Gene's body grow better because he's not like other babies, right Dale? Mister deep-thinking sensitive boy nodded his head sympathetically, 'Yeah mum, those stuck toes of his, hey?"
Dale's a little weird now I come to think of it. For years after Gene's arrival, he kept an invisible baby book and carried it with him everywhere. Each time he saw a baby, he would pretend to write down its details in this fictional note-book. None of them could match his own baby's superior wonderfulness of course, but they were all pretty damn beautiful apparently. I eventually insisted if he was going to peer intently at other people's babies and publicly make pretend inscriptions about them, he should be polite enough to talk to the parents and ask sensible questions. How old is your baby? Is it a boy or a girl? What's her/his name? Isn't s/he beautiful? I became accustomed to explaining that Dale was a professional baby appreciator and if he said their baby was beautiful they could be sure it was true.
He no longer keeps the 'book' (and just now he threatened to kill me if I tell anyone about it) but this big tough eleven year old boy, who can happily murder hundreds of Orcs, Clone Troopers and Dinosaurs with a quick L X R X triangle triangle of his thumbs, still points out a cute baby or toddler whenever we pass one with an appreciative 'Awww'.
But back to the beginning: The first time I realised that Dale took his Faithful Retainer responsibilities very seriously was when he was still at Kindy. Gene wouldn't have been a year old at this stage. It was pirate day at Kindy and the parents were invited to be sung at by the little hearties who were all dressed up with eye patches, bandanas and fake parrots on their wee shoulders. I had Gene in the pram and, not wanting our wheels to get in anyone's way, I'd parked us at the far end of the back row of parents. There we were enjoying the show when Gene, from the depths of his pram, hurled a rattley toy out onto the floor. Was Dale too absorbed in his performance, doing the bidding of his teacher, enraptured with his musical diversion to notice this? Of course not. The Faithful Retainer was always on duty. Without a second's delay he broke ranks, flew to the back row of the spectators, picked up the toy and returned it to his baby brother. Thank you Dale. And then he happily returned to his position and continued with the show. What a sweetheart!
Car travel requires that the Faithful Retainer be on high alert. With my eyes on the road it falls to Dale to keep the Prince entertained, fed, hydrated, and happy. Our car is small enough so that two little people in the backseat can happily reach each other from their carefully restrained positions beside each window. This facilitates the passage of foodstuffs, drinks and toys from one to the other, but it also means they are close enough for the Prince to indulge in some of his favourite diversions like hair pulling, pillow stealing and brother pinching. All received with long-suffering acceptance by the faithful retainer. "Don't let him hurt you Dale!" I admonish from the front seat. Gene will be seven this year and can pack quite a hurt with one of his superior pinches. I've been known to let out a sob when he's caught some of my delicate body tissue between his pincers. "He can't help it Mum. It's not his fault." Sigh.
Dale's the kind of kid who when he's finished a task in the classroom he asks if he's allowed to help someone who's struggling. He's the kind of kid the younger ones instinctively go to in the schoolyard if they have a problem. He's the kind of kid the teachers describe as a 'joy to teach'. His grade four teacher said to me one day, in front of him, "I wish I had thirty Dales in my class'. He's the kind of kid who will no doubt get the shit beat out of him when he's a bit older but so far we haven't had to worry about that.
If there's one thing that saddens me most when I hear people weighing the pros and cons of continuing a pregnancy where the babe has been diagnosed as less than perfect, it's this: 'I couldn't do that to the other children. It's not fair on them." In my opinion the best thing you can do for a child is to introduce them to the joys and sacrifices involved in having a disabled sibling. Dale is a kind, sensitive, generous, dutiful boy. Maybe he would have been anyway, who can say? All I know for sure is that I couldn't survive without him. He has a delightfully wicked sense of humour (no idea from where he gets that!) that keeps me laughing even on the worst days. He loves his brother dearly and has far more patience with him than I do. The Prince's Faithful Retainer is the reason I get through each day. In fact, he is my faithful retainer too.