Silly Little Words

“We got him out just in time”

“If the results are positive, we will write the consent for a late termination”

“His delays are severe…. Sometimes when the kidneys aren’t the biggest issue, parents consider an end of life plan and palliative care instead of transplant”

I am human. I didn’t notice that I had the skin of a rhino. Or a heart made of stone. Or a robotic brain. Yet, apparently the medical community assume I do. Maybe it’s my medical lingo swagger. Or maybe the set of my jaw and the steely determination in my eyes to hold it together just enough to not to cry and fight for everything my children deserve. Or maybe it’s the smug smile full of love and hope for my child that you think needs wiping off my face. OK, that’s not very generous of me, but seriously, if you’ve got nothing nice to say, did your mothers not teach you to not say anything at all?

You see, there are some things I think and don’t say. Worries about the future I quash, bury. It’s that first one up there, in my top quotes Of All Time. And it was when I read this article about Jane Raca and her book Standing Up For James that the cogs in my brain churned up a worry storm:

The book doesn’t address the ethical issues of neonatal care, but Raca adds: “Because I love my son, I am not in a position to sit on one side of the fence or the other, but what I would say is if society is going to make a decision to keep those babies alive at all costs, it must then follow through and support them through a profoundly disabled life. It is absolutely immoral to say ‘Life is wonderful, let’s save these babies’ and then just abandon them, which is what goes on a lot of the time.

Like Jane, the question is not whether my boy should have been saved. But I do worry if it was part of his plan. What if the just in time express had called at the wrong station? That is a very uneasy thought, and one that occasionally you may see me stop going about my day and try to blink and make disappear. And give my boy a tickle and cuddle just so a delicious giggle erupts and reminds me that this is an unecessary negative thought. It pushes me forward to fight for the support that isn’t readily available. That requires list upon list, relentless phonecalls. “Sorry to bother you again, but I was wondering..”. A For Fuck’s Sake when I make sure I’ve hung up the phone. Sometimes I don’t care whether I have.

But there’s a support I need when words fall from others mouths, leaving meteoric craters on my heart. Take today. The anxiety of a genetic review had me rushing about, filling miniscule voids of time that may give me pause for thought, causing me to twist my ankle whilst rushing up and down stairs. I already knew it would be an up to date review of his features and development. My eyes are wide open to Rufus. I am not blinded by denial anymore, but what may surprise you is sometimes I forget he’s not the norm. I just kind of like him, my Thin White Duke, so I don’t really give two hoots about what the rulebooks say he should be playing at. My preparation for these sort of discussions is to brace myself for coming out of this world. My ground control has to call Major Tom. Wolf couldn’t attend, so I called for back up. See, I wasn’t naive. I’d even called ahead to check this was ‘just’ a review and not any new findings.

It went as planned, both of my offspring vied for attention through tag team tantrums. But I was still the victor, and both of them eventually fell asleep and left us to the serious stuff. The discussions were coming to a close, I’d held it together. I’d unflinchingly regaled them of all my son’s failings and successes. Pushed for a neurological assessment. Lied when I said I was ready for him to have an MRI. Looked unmoved by suspicions of various syndromes because I’d already entered them into search engines and read and read until my heartrate couldn’t cope with the assault. But then I deigned to ask a question, a gateway question. So if we do think it’s syndrome x or y, do we have an expectancy as to when he will require transplant?

And this is the answer that fell from outer space. From the dizzying heights of his renal consultant’s mouth. Rufus has more ‘significant’ problems than just his kidneys, other parts of his body are more severely affected. His delays are, well, severe. In these cases, parents sometimes choose to consider an end of life plan or palliative care instead of transplant as fixing his kidneys won’t fix the whole. Would we choose to put him, and the whole family through the transplant process if he will never understand why we are putting him through it? It was that reductive. My child’s disabilities may preclude him from a right to life saving treatment if we so wish. Rufus reduced to nothing. A burden. An unfulfilling human.

Here’s my question. Who deserves a transplant? Us that are priviledged to walk and talk? Well, right now words are barbed and injurous. And my heart has just been stomped on. Did they save my boy for this?

Somehow Rufus chose this moment to wake up and scream. Not just any little scream. Banshees were on the sidelines taking notes. In a flurry of tears and upset we left to the waiting room. I probably thanked them for their time. The end of Rufus’s gastrostomy came off, milk spilled. I knew I shouldn’t cry over that. Dulcie hungry and adding her own less than dulcet tones to proceedings. Someone stepped in, ushered us into a side room. Rufus calmed, sorted. This stranger held me and let me crumble. She was a colleague of the geneticist. Urged us to stay there until we were ready to go. We lay Rufus on the floor and allowed him to be himself. I fed Dulcie. We all had a cry. The geneticist and counseller came to see us, reassure us that this conversation had been a surprise to them and in no way supported their views. Talked to us about our boy, looked upon him kindly. There was some scene stealing defecation from Dulcie.

And what for Rufus, this child not worthy. Recently we’ve discovered he loves Round and Round the Garden. He knows and tenses in excitement at the tickles, erupting with peals of laughter when he is indeed, Tickled Under There. He can squeak and grunt his rendition of B.I.N.G.O when prompted. He will clap your hands at the appropriate moments in Wind the Bobbin. He is mastering toys involving hammers even though his aim isn’t always true. He is playful and full of happiness. He’s taking more and more notice of his sister.

So I will continue in my fight for support for my son. And fight back the tears when my own barricades are shot down. As Raca says;

What makes me so angry is that parents who have been given a diagnosis of a severely disabled baby are in a pretty dark place. It’s going to affect their employment, their marriage, their other children profoundly; their lives are completely altered and made, not necessarily awful, but difficult, for the rest of their lives.

But here’s the bit I most agree with;

A lot of humour comes out of disability. James makes us laugh all the time.

It’s a shame personality transplants don’t actually exist, because Rufus would be a marvellous donor. I learn a lot from all that he fails to comprehend.

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