Today is RD’s 7th birthday.
I wonder what he would be like as he should be moving from an infant to a junior. Of course, neither his size nor his cognition would be moving up in a stereotypical way. No doubt, if he were still here, I would be feeling the weight of that. I would be learning yet again to live with the rising fear in my throat: long term care needs, further adaptations. Eyes fully open to the fact that in that instance, life gets harder to navigate. Inclusivity gets harder to wedge in.
It’s difficult for me to write that, to admit to that, for fear that it is interpreted that I am relieved that he is forever five. That somehow I ever thought of him as a burden. Honesty comes with that price though, an interpretation that doesn’t cover the complexity of human emotion. The ying and yang of true love, and of being a parent, of being a parent carer. There’s a whole lot of greyscale. A lot of overlaps in Venn diagrams. It’s the playdoh after too many squashings.
It’s his birthday, and already I’ve had to shift about some vague plans. DD was up in the night with worms. Yes, frigging worms. Of all the filthy-starting-at-school-bugs to pick up, this was what she had the night before his birthday. I had to examine her bum by torchlight. There has been copious washing of clothes, towels and bedding. I’ve doused the house liberally with Zoflora. The day has started crankily.
On the walk from the pharmacy to school drop off, after she chewed her ‘gross’ tablet, conversations seemed to fall from nowhere.
“Mummy, did RD have to take tablets?”
“Yes, every day. Mummy and Daddy would crush them and mix them with water to go down the tube into his tummy”
“Could he not chew them?”
“Not really. Do you remember what he did like to drink? Do you remember his cup?”
“Was it purple and sparkly?” “Yes!” “Did he like strawberry juice?” “No, just water” “Did he not like anything else?”
Spirals and spirals of conversation: did he chew toys? Did he suck his fingers? Did he get worms?
They’re reading Aliens Love Underpants at school. We have a copy somewhere, bought for RD, with noisy buttons down the side. I’m fairly sure he used his minimal muscle mass to rip book from buttons though, so I mentioned this to DD, but that I would try and find it.
“Sellotape should fix it Mummy. Have we got sellotape? We have the book at school but it’s not ripped because there are no babies in the class to rip it!”
“Wait, DD, RD wasn’t a baby.”
“Oh, I mean big babies. Ones that can’t walk or talk and like buttons and rip things”
“No, darling, RD was 5 when he died. You’ll be 5 in a few weeks. He was your age. He wasn’t a baby, he was disabled. Sometimes people are different. RD’s brain and body were different to yours so he couldn’t do things the same way.”
“Will I die when I’m 5?”
“NO! No, your kidneys are fine. Remember we talked about that the other day?”
The other day was Sunday, the day when she suddenly asked why he died. When I gave a potted anatomy lesson, and she giggled about wee.
It’s RD’s seventh birthday and it’s raining. BD is having an enormous nap in their shared room. It’s so everyday and yet it’s not. Plans are shifting and changing with the only real goal a party tea after school. I wish I could preserve it and keep it aside just for RD, but life is butting in and making itself so very pronounced.
I don’t know if I’m sad, or happy. I have moments of complete joy- the peels of laughter from BD as DD showcases her moves on the ‘stage’ (our kitchen floor). Dancing to the tunes coming from the new bright orange radio bought in RD’s honour for his birthday. I think back on birthdays past and they weren’t all rosy- I didn’t get to hold my baby until a week after he was born, wherein I cradled a tiny fragile bird connected by seemingly a million gossamer wires to an incubator. His first birthday where I cried copiously in the garage at his party as I knew he wasn’t doing anything anywhere near what would be considered a milestone. Where I realised his sensory needs were too much for a busy party.
His third, fourth and fifth birthdays were good, but lowkey. There was always just the slivers of sadness there as he aged chronologically but not developmentally. A mass of contradictory emotions.
I talked to Wolf about it the other night. If RD were still alive, I would want the 5 year old version of RD. I would want him to be forever five, where he was bursting with joy and interest and health. Where he’d just about grasped opening presents and surprises. Where I could still carry him, not necessarily easily, but he fit into the crook of my arm and the nook of my neck. I would want him forever five but not in the way we have it.