Find Your Tribe

Before you, I assumed This Wouldn’t Happen To Me.

Before you, I assumed that if it did, I would be prepared. I would know what to expect when I was expecting.

Before you, I assumed I wouldn’t cope.

After you, I assumed that we were one blood test away from closure. One blood test that would make the connection.

After you, I assumed we’d never find our place. I searched and searched, I denied and denied.

After you, I assumed my life would be full of more worries than happiness.

 “When you assume, you make an ass out of you and me”

 

But here you are, my little blonde pixie.

Rufus-49.jpg

Here’s what I know;

You haven’t caught up. You have no recognisable words. You have legs like twiglets that don’t support you well.

That one blood test took 4 years of many many tests, and it has taught us nothing more than we had already learned so far.

That one box is never enough on any form. Nor is the answer to “what’s his diagnosis?”. Or less politely “what’s wrong with him?”. That’s unlikely to get a favourable response.

More of you doesn’t work than does.

Here’s what I’ve learned;

The true definition of quality of life. You try with your whole. When you love, you love with all of you.

You have enriched us all. Not just us as a family of four, but wider family and friends.

That every goal you achieve, no matter the scale, is enough. You are enough.

That you are a pure soul with the heart of an early 90s raver: there are never enough flashing lights or tunes.

That some days are harder than I could have ever have assumed. But not because of you, but because I have to hold you down when you’re scared. I have to let people prick and poke at you. I have to quietly shush in your ear so that I don’t cry. When I see people look at you and not see what I’ve learned.

That I have a fight in me I never knew was there. How to truly advocate for another.

That sometimes there are more questions than answers. That life doesn’t always get worse even when the chips are down.

That we are not alone. We weren’t alone when Undiagnosed. We are still as supported in a community now we have some answers as we were when we had so few.

We found our tribe. Unconnected by symptoms and level of ability. Connected by a feeling of otherness, of feeling and finding our way through the unknown.

SWAN UK is more than a support group, they have a Big Ambition:

  • They want to ensure every one of the 6000 families that have a child born with a Syndrome Without a Name every year, have the support they need, when they need it.
  • They want recognition that being Undiagnosed is not always a temporary stage.
  • They want every child and young person with a Syndrome Without a Name to receive high quality coordinated care and support both in hospital and at home, regardless of diagnosis.

That Big Ambition needs financial support. As our fourth annual Undiagnosed Children’s Day approaches, please help us support it by donating any amount to:

https://www.justgiving.com/swanuk/

Text: SWAN11 (amount) to 70070

 

And if you are a family needing that support:

 

info@undiagnosed.org.uk

undiagnosed.org.uk

undiagnosed.org.uk/blog

020 7704 3141

This Girl Can’t (Unwillingly)

Running and parenting. 

I often wake up and dread that I have to do one or the other most days. Then I get up, get going, think f*ck me this is hard. I find my stride, feel like it will NEVER end, then at the end of the day look back with a warm smugness that I achieved that.

Also, both aren’t great for your knees. And boobs.

It’s my birthday on Sunday. It’s also the London Marathon. And I should be running it, having received my golden ticket: a ballot entry. But I won’t be, and it’s one of those smallfactsthatshouldntbotherme but REALLY does. What I wouldn’t give to magic myself marathon ready again. But the bright eyed of you will have observed that’s because I’d quite like to rewrite the last 10 months anyway. It’s going to be my birthday, and I’m definitely going to cry because I want to. 

I’ve said this before, I used to think people who went running were more than likely to be dicks. It was way too outdoorsy to hold much appeal. And involved insane amounts of neon Lycra. Plus I knew I was crap at running. Always near the back end in cross country if I didn’t feign illness or forgotten bits of kit to get out of it. I have lovely friends that run, I knew they weren’t dicks, but that part of their lives was otherworldly to me.

But then I realised, I’m not crap. I can put one leg in front of the other and move. I just might not be the fastest. And it’s not easy, it takes time to see improvement. But I’m determined, and this is what I need my daughter to start knowing now. That people that look like they can do something you can’t are not most likely to be dicks. They could be you. 

As Lauren Laverne (I should have some 😍😍😍 inserted here) said in The Pool:

Sport does not belong to fit people anymore than karaoke does to those who can actually sing.

(I can also belt out many many poor renditions of songs in private. And with enough wine, in public)

I stopped running when I fell pregnant again last year. I just wasn’t that bothered because 

a) I was frigging knackered. Those in the know get that. I was essentially a puddle of human on the sofa at the end of most days. 

b) my pelvic floor has creaky boards after its past batterings, and I didn’t want to lose something. 

And c) I was content. 

But then I lost something without running. The mojo had gone. The baby had gone. My muscle tone was lost way back. 

It dawned on me that I’d built a connection between being physically strong and feeling mentally strong. And I’d gone soft all over.

When I feel like I have no time for anything right now I know I have to make time to run. Force myself out that door when I know I’ve got numerous tv programs that I could just watch instead in an hour. Set the alarm a little earlier.

Because it’s good for my brain. And also because this brain knows this stomach and its love handles are going to be viewed by a lot of medical professionals. Scrutinised under an MRI scanner, all in the name of my donor compatibility testing. And I’m more than a little bit vain.

  

Long Faces, Frayed Knots and Loose Ends

29th April 2016 sees the third annual Undiagnosed Childrens Day. This post joins a group of fabulous bloggers talking about SWAN (Syndromes Without A Name) UK. 


Three doctors walked into a bar. 

One from Leeds, one from Bradford, one from Airedale.

Then two dieticians walked into the bar too.

One from Leeds, one from Bradford.

Then three nurses walked in. A community one from Airedale, one from Bradford, and then, woah what’s this, a school nurse?

Oh and now a dialysis nurse. That’s exciting.

So, still with me. No long faces? Or frayed knots?

So this gaggle all bought us a drink. That’s nice isn’t it? Except they top shelved us. Northerners eh? Each drink was different. And we drank them all.

First couple and we’re all “wooh yeah, this is great. I get it now”. Before long we were confused, bleary eyed and crying for our mums. 

Badumtish.

So the savvy amongst you will have worked out that:

a) this is not a joke 

b) it’s really not a joke 

c) it’s a true story 

d) sadly no drinks were actually involved 

e) drinks are actually opinions 

f) this is no reflection of all those professional’s personal lives

g) we actually have a LOT more doctors at the party.

The thing is, we aren’t alone in this. And despite now being classed as graduating RD from undiagnosed to diagnosed, I couldn’t tell you that we got anything more than a cap and gown. And we didn’t even get that. RD’s gene mutation has thus far been found in mice. Just mice. And I don’t think I’d take a drink from a vet, you don’t know where their hands have been, do you Herriot?

So we still have to say; Yes he has Russell Silver Syndrome. Yes he has Congenital Nephrotic Syndrome. He has that because of a uni parental duplication of chromosome 7 with a gene fault: MAGI2. Yes he’s profoundly delayed. No he can’t walk or talk. No, you won’t have heard of that before. We don’t know what it means apart from he’s currently writing what it means. And yes, that’s equal parts exhilarating and fucking terrifying. 

I’d imagine you have that glazed look reading this now. Or perhaps a slight head tilt where you hear this parent, who just buys stuff for a living, trying to advocate that we have to prepare for the unexpected. Until you see it for yourself.

And no, no, our lost babies are completely unrelated to that.

Essentially wolf and I spend a lot of time trying to collect glasses. In between the usual parenting high jinx. And earning a living. And living some sort of life.

Here’s a more tangible experience. Today the OT for housing and adaptations visited. Now, she’s different to the OT for aids for living from the CDC (Child Development Centre) but that’s by the by. Two main issues for us and our Edwardian terrace: getting in the house and getting upstairs in the house. The first is fairly clear cut- his hurmunculous of a wheelchair does not go up steps or through two porch doors easily. The latter isn’t. Right now, you’d assume RD needs a through floor lift. But you know, that involves a lot of upheaval from his perfect annex bedroom and en suite now (I know. The Prince). A stairlift could be an option but he’s not showing enough transferring skills right now (weight bear and pivot).

We know two things from his diagnosis: he won’t ever be very big or heavy. The transplant, if successful, should massively improve his muscle tone and energy levels. But that’s those things in isolation. RD is the rub. So do we put in a through floor lift now, or wait and see. They say patience is a virtue…

Again, it’s down to wolf and I to coordinate. To canvas opinion. To investigate whether separating the two jobs would have an impact at a later date. I need a drink.

One of the key aims for SWAN UK is that every child and young person with a Syndrome Without A Name to receive high quality coordinated care both at home and in hospital whether they have a diagnosis or not.

Coordinated. And not by the parent carer.

Because 6000 babies are born every year without a diagnosis for their medical, developmental, or both challenges. 

6000.

And I think maybe it was a doctor that told me money doesn’t grow on trees. So this needs awareness and it needs cash. 

So, awareness. Please spread the word. SWAN UK is more than a support group, but the support there is absolutely vital.

Cash. Text SWAN11 to 70070 to donate or https://www.justgiving.com/swanuk/

  
*party hat compulsory

The Spaces Between

I’ve been known to sneak a peek at the last page of the book midway through reading it. To decide on my pudding just after I’ve chosen a starter. Not necessarily to skip to an end as such but just to have a little view as to how A might get to B.

We know now that RD is not fairing so well. His kidneymoon is over and I’m not even sure they’re on speaking terms. We know transplant is imminent, and yet in the time it took for a coin to flip, now not so imminent as he needs a period of dialysis to improve the homeostasis of all his blood levels. And here is where we are looked at square in the eye and asked what we want to do. Haematological or peritoneal? Live or deceased donor? 

What do we want to do?

Run. Stop time. Anything but decide.

I want to know how it will be. How it will go. Show me my boy in a year. Please show me my boy in a year. I can’t bear to think of the alternative and yet it chews at my bones daily at the moment.

I didn’t know, until I saw her almost slip on a staircase, that my knees could feel love.

Eva Wiseman, Observer Magazine, 06 March 2016.

The anxiety I feel at the moment feels like bruised fingernails. A dull, pointless, ache. A sickness like the first sleepover as a child. Homesick. That home is the safe space we once inhabited when RD was stable. And it feels a long way away.

It’s this space between we exist in right now. Somewhere between a desire to live and to grieve. Trying to open up to the possibility that all is completely outwith our control, and yet still tasked with the monumental grownupedness of ‘what we want to do’. 

I can only apologise if some functioning fails me right now. Hour to hour I veer between the energy to go for a run, clean the house and do some gardening to suddenly then stripped of the ability to even respond to a simple text message.

I keep holding RD close, as close as he will allow for as long as he will allow. Trying to transmit my urge for him to be okay down my arms and into my hands and into his boney yet swollen body. And, it’s probably his dwindling energy reserves, but I feel him give into that for longer. Stilling for that brief second longer before trying to scrabble around to escape or pressing my mouth to make me sing. A space within a space that makes things that bit more bearable. 

  

3 – .6 = 2.4?

They say things happen in threes. I’m not sure why. I’m fairly sure when things go tits up I stop being able to count. Because clusterf*cks generally contain a billion issues going awry. Maybe if I took the time I’d realise that the minutiae break down to a multiple of three. I think it’s supposed to give you hope that if three shit things happen in a row that that’s you done. Just don’t cut your nails on a Sunday, or put new shoes on the table again.

But really there were three things. Three things that as I sat there on Mothering Sunday I tried to hold back the rising cold of sadness. Two babies gone, and one child’s health now showing signs of rapid decline. Those three things were the lynch pins. The crashed car, the missed train, the diverted flight just another trio of the week. A late school taxi, an officious security man on baggage check and the spillage of shower gel over the contents of said baggage another. Spirals within spirals.

I think only Pete Tong could understand just how bad it all got. Well if he then got the lurgy. Because I’m now also in my sick bed. I’m sure I could also group that with another two things but I’ve got major brain fog. 

Sat in the hospital playroom on Sunday awaiting yet another set of blood tests for RD I thought back to before I was a mother. The naivety. Not just that this job would be hard and relentless. I mean, I could guess at that. Or how many people would call me Mum even though I’m pretty sure I didn’t grow medical professionals in my womb. But just how left of centre it could go. I wanted, I still in lots of ways, want three children. And I’ve created four, we’ve created four. 2 + 2. And now one is in danger. 

We’ve known from 8 weeks that RD’s kidneys would go at some point. But as goalposts moved, and we were graced with far longer than anyone anticipated, you can’t help but wonder if actually it was true. And we’ve been lucky that whilst the extent of his disabilities unfurled, his kidney function was relatively static. But that luck has meant this has left us breathless. Trying to firefight his sky high urea. Filling in forms that ask me how much I drink a week. Knowing that from now on either the phone could ring with the news that a kidney is ready. Or in six months we’ll know whether one of mine is a good enough match.

I remember though that we are at this point because we have fought, and will continue to fight for RD. In the face of suggestions of palliative dialysis. Of firefighting until his time was up. Questions as to what makes up a quality of life. Living, that’s what. And that makes me proud to be the mother I am. A grafter and a fighter. A painter on of a lipstick smile.

  

Responsibilities 

Two arms. Two legs. Ten fingers. Ten toes. Not a temple.

And yet at this precise moment in time, utterly responsible.

This is the body that duplicated or replicated a chromosome. And on that very chromosome there lies a fault in a gene.

This is the body that may be harbouring some autoimmunity to pregnancy. That is untrusting and inhospitable, unlike the mind that steers it.

This is the body in which the blood flowing through its veins connects me to my son. Puts me in the running to be a donor.

This is the body carrying an organ that I can only hope will be the one that helps my child.

Just one body. That from the outside is 5’7″. An average build. Pale skin. Size 6 shoe. Ordinary. And yet from the inside has the ability to end life and start life. And maybe, just maybe, fix life.

Fuck.

  

Dirty Little Secret

Relishing the early weeks when only you and your partner know your special secret.

                                                                                                                                    http://www.babycentre.co.uk

I’m not really supposed to talk about this. Not the done thing is it? For seven days I’ve known my secret has altered, changed, ended. And it could forever stay that way, a secret shared between loved ones. I’ve worked, I’ve mothered, I have continued because I knew of no other option.

I’ve answered the question “So, what number pregnancy is this?”. “Four.” 

“And how many children do you have?”. “Two.”

So now the gap widens, and yet, who can I share this with? 

My first dating scan, I knew what I should see. 10 weeks, a little alien punching and fighting. A heartbeat, so strong and fast. From the outside I looked 10 weeks pregnant. But from the inside, silence. Stillness. Not the right size. Again.

In my head, placing the pain on a sliding scale. 

Being told your living child will most likely die. WORST.

Finding you’ve lost a baby at 20 weeks. NOT AS BAD.

Finding you’ve lost a baby at 10 weeks. BETTER?

Stupid fucking sliding scale. It all fucking hurts. Trying to comprehend the pattern. Annoyed by my optimism this time. No rainbow, no pot of gold. Just a carrier bag full of rotten potatoes. Then an appointment for 10 days time, to decide what to do. Just in case, but no one is in any doubt. I ask the room for what I should do with myself for 10 days, in this isolated place. I imagine running away. I really think that through. I don’t want my children to absorb any of this pain. What do I tell people? Will my false smile slip?

But no one knows. It’s up to me. Fabulous.

And more yet, they think they know why this is happening. To all of those four pregnancies I’ve had. A name of something written on paper. In a marvellous irony, it is illegible. So I ask her to sound it out. Commit it to memory, unaware that it will bring some peace.

We hold hands on the way back to the car, struggling to find words. But all I can ask is what can I do? What will I do? 10 weeks disappears. 10 days feels like an eternity.

Seven days in and my body is making its own call. The process has begun, with equal measures of sadness and relief. So far, no intervention necessary. Not such a special secret.