Best laid plans

A little bit about us and the Murphy family, who are found at http://www.littlemamamurphy.co.uk/?m=1

So this time last year both of our families were lucky enough to go on the Destination Dreams holiday to Orlando with Caudwell Children. I say lucky but actually the criteria is a bit shit - "Life threatened, life limited" etc. Not really the sort of boxes you want you tick. But anyway. There we were. And it was amazing. The purple people are genuinely the most helpful people ever, apart from the volunteers at Give Kids The World who I think made me and Little mama cry within 5 minutes of their induction/ arrival/ meeting thingy. That trip is a blog in itself, but as I was " on a break" as they say you'll just have to imagine how great it was. Oh all right then here's a photo...

Many of the families who we stayed in touch with from the trip are feeling pretty low at the minute. Poorly children, the busy festive season, and a desire to be back there where we were packed into a little bubble of purpleness. No hospital appointments, no phone calls, no battles, just being surrounded by individuals who wanted to help, and would bend over backwards to make your life a little bit easier for that one special week. We spent the stay making memories and enjoying time as a family ( which can be very hard to do in our "normal" life). Towards the end of the stay we began to talk more, open up, and speak with other families. We made some excellent friends, as did Thea. ( I won't blog about those families as I haven't checked it's ok).  The only difficult part of the trip was the flight. Nate on a plane? More like "snakes on plane" but with less Samuel L Jackson, or snakes. Anyway it was tricky.

It's difficult to describe just how amazing the holiday was. Loads of people go to Orlando and do the parks, yeah it's pricey but it's not a big deal. I struggle for words when I think about our stay there.  Put it this way I have cried today at the following things:

- opening a bag of decorations and finding these lights 

- listening to a compilation of Christmas songs and carols on my phone as we put up the tree which reminded me of the amazing carol singers at GKTW ( which I also cried at)

And then later finding Little mamas Hugh is in hospital again. 

We have known each other for years me and little mama. Firstly as the mothers of children with undiagnosed conditions, then as volunteers for SWAN UK, but this trip was the first time our families had met. Luckily they got on ( thank fuck). And so we made arrangements for the Murphy family to come up and stay with us this weekend, during the time that last year we would have been together in Florida. A great idea. But sadly not to be. Nate started projectile vomiting Thursday morning, followed by his sister in the early hours of Friday morning. Both myself and Michael then took ill. Nate wasn't improving and wouldn't tolerate food through his gastrostomy or jejunostomy. Dioralyte was just about ok but he had to be checked by community nurses and then stay for observation in hospital. He may have required total gut rest and an IV if blood continued to be found in his stomach aspirate. As with all bugs it's not "just a bug" for Nate. We managed to escape hospital but were clearly a bit contagious. Then the next day Hugh started with his horrendous seizures. 

See here for more details 

http://www.littlemamamurphy.co.uk/2016/10/seizure-watch_17.html?m=1

All of which brings home how "lucky" we were to get to go last year. That the children were well enough to make the trip, and behaved while we were there. But it's done. It's over. We don't get to go back. It was our "trip of a lifetime" and I'm very thankful we got to go when we did. It's the turn of other families now.

A weird mix of jealous, lucky and sad is how I feel at the minute.

Plans are hard to make and so often come to nothing. We've all gotten used to the fact we may need to cancel on trips/ people/ events at the last minute but cancelling this get together felt even more utterly shit. We needed the meet, the wine, and the laughs. 

Any escape would be pretty brilliant about now actually. 

*drinks more wine*

When my name is not my name

I adopted a variety of new names when I became a teacher. I would leave work with shouts of "Miss!" ringing loudly in my ears. Miss            ,  Mrs               , Miiiiiiiss, even a cheeky "Miss man!" ( that's slang and not a reference to my genitalia, just so you know). These names reflected my identify and profession. I'll not mention some of the less pleasant things I've be called, shouted, or had written on my lab door or benches...

Students become fascinated with trying to guess their teacher's first name presumably in an effort to make them more relatable and to humanize the teaching profession ( they think we live in school, have no life and love marking after all). One tricky class spent about 6 months chuffed with themselves for managing to persuade me to divulge my name (Rita) and were gutted to find out I'd had them on. 

Small pleasures and all that. 

So when you feel your identity starting to slip away life can gradually or sometimes suddenly become quite tricky. I've spoken before of my need to work in order to have an identity other than "parent/ carer/ nurse/ therapist/",  about feeling the loss of "me", and about how carers need something other than caring... 

But when and where does the loss of identify come as a carer? 

Is it when the caring outweighs the parenting?

Is it when the inside of your house looks more like a hospital ward than a home? 

Is it when you spend more time on hospital wards than on holiday? 

Or is it when even health and educational professionals stop seeing you as you? 

"Is that Nate's mum?"

"Can I speak to Nate's mum please"

"Mum says"

"Let's ask mum, mum what do you think?"

"Mum wants"

"Mum thinks that"

I should only be called "Mam" by my daughter. You are not my child. Please don't call me "mum"

I know that in some seminar or tutorial health workers have been taught that in order to show empathy and be more inclusive they should use "mum" and "dad". I understand when they do it that it is actually them making an effort, and perhaps they feel uncomfortable using a first name as it might seem too familiar. But honestly, all it does is pee us off. It doesn't make us feel included or listened to. It just widens the gulf between us. Our names are on the first page of my son's notes after all. 

Parental feeling about this does seem to be gradually filtering through the NHS, particularly within the younger cohort of doctors ( err unless on the system next to my name is " don't call her mum she's pure radge", which would explain a lot). Those I have met in the last 6 months have certainly made the effort to ask my name and a bit about me. To be fair those I've bet at our local hospital have been bloody brilliant ( and not just at not peeing me off). 

This matters. This is huge. Especially when sometimes even I forget who I am. 

(See! I can write about this without ranting. Not ranty at all. I don't complain about this to everyone who will listen...) 

Our new addition

So we became doggy parents. That's "doggy" not dodgy or dogger, just to clarify.

This little  guy joined us last week:

So a puppy! Because clearly our lives are not complicated enough... 

But why? Well to be honest I've always wanted a dog ( i grew up with dogs and still miss Tanya's disgusting breath as she rested her head on my pillow next to me, or her barking as boys tried to kiss me- no need for an open bedroom door in my house). I wanted my children to grow up with a canine companion and then there's the bonuses: their silliness brightens dark days, their closeness provides comfort, and their routines give purpose. Yes well maybe I have a pie in the sky notion that Freddie will somehow become PAT dog, assistance dog, and seizure/ apnoea alert dog extraordinaire...

(Yeah right I'll just be happy if he craps outside) 

My daughter decided quickly after his birth that he was her favourite and he would be be hers. She has been helping to care for Freddie and his brothers and sisters, now a dab hand with a wipe or removing poo. I'm not sure she would have ever forgiven us had we not brought Freddie home. Although the most taken with the dog is probably Michael ( softie).

We have had a tough few weeks/ months as several of Nate's issues have become  far worse. At present he seems to have almost constant issues with stomach pain, needing venting and not tolerating food. Then there's his overnight shenanigans. We recently had the pleasure of a tonic seizure- extreme stiffening and oxygen sats of 40 even on his ventilator. I couldn't open his airway, or even his mouth to blow into it as his jaw had clamped shut. It was a thoroughly frightening experience and now Nate is the "proud" owner of a nasopharyngeal airway, buccal midazolam and a seizure management plan. 

*drinks wine*

A bit of fluffy goodness goes a long way at times like these, and it's especially lovely to see how much Freddie likes Nate. Although I'm hoping Freddie learns quickly to avoid karate chop action Nate's arms and legs... 

So far Freddie is not distressed by Nate's alarms and we are trying to socialize/ familiarize him with all of Nate's equipment. 

Wish us luck!  

*drinks more wine*

*picks up poo*

Hoisting sucks

We have been heading to a certain point for a while now. I suppose it's a bit like the opposite of a developmental milestone really; the point at which my back says "actually knobhead please stop making me withstand all 26kg of Nate as I might actually break and then you would be well screwed". 

Well consider that "milestone" reached. Yesterday i felt a pull, and a stiffness in my back. Nothing bad, but a warning nonetheless. 

You see yesterday was a day of screaming and crying, Nate not me (although I felt like it). Nate has ATR-X syndrome, for which there isn't a massive amount of information. What we do know however is that it associated with a large amount of abdominal pain and distress. The only break from this was gained while playing with puppies ( and I may have lifted him onto the floor for this...). One of these puppies is soon to be ours, but that's another blog post entirely.

The automatic response of any parent seeing their child in distress is to cuddle them in and so I spent much of yesterday picking Nate up and half dragging him onto my knee for comfort. With a hoist this takes a good deal longer, not a speedy or effect response. My attempts went something like this:

...Ok now just let me work out which of these loops on the sling I'm using again...ok you're going up! Oh shit is it charged? Right I'll move you to the sofa and...oh now that doesn't work I can't get you onto it...err I know I'll swing you in and lower it at the same time...shit no that's not working either I need to be a fucking octopus...

*gives up, hoists onto floor, cuddles Nate on the floor* 

So it all went well. 

This got me thinking. We had hoists put into the old house which we rarely used. Partly because I could manage most of the time, but also because no one actually showed us how to use them. Hoists and slings arrived and that was it. No advice about loops on slings or how to work this out, no being shown how to attach it to the hoist or advice about getting the sling on Nate either on a bed or in a chair. Nothing. It's no wonder that so many carers suffer from back problems. Even after the battle is won to get the equipment you need, there's no training to actually use any of it. Or maybe that's just our experience? I asked my lovely portage worker much much later about slings and she showed me what to do, but to be honest I forgot much of what was said. I wasn't in the greatest shape mentally and struggled to retain any information at all. It's purely through training I had to do for other reasons that I have any idea about rolling on and off slings and towels, or using hoists at all.

 That can't be right can it? 

So now I accept I need to use the portable hoist, but it doesn't do everything I need. It can't lift my crying child onto my knee for comfort, it can't fit into tight spaces, I miss the hand around my neck as I carry Nate, and it looks terrible. There is a far greater issue too, the fact Nate will be confined to his chair when out and about wherever we go. 

The only answer I can think of is to get into bed with Nate on a morning and stay there all day. 

Money money money

Eee honestly I've given this post a title which makes me chuckle. It won't make anyone else chuckle unless they had the pleasure of my Christmas play in junior school in which we wore papier mache masks ( I can still smell them) and danced in total uncoordination to Abba. 

So we are currently sat watching the apprentice. This program makes me feel so far removed from the lifestyle of these people that I may as well be on another planet. I've never been particularly motivated by money, more about "making a difference", naive yes, but that was the plan back in the day, and that was even before having Nate. Perhaps that's why I went into teaching. There's certainly not much societal value or money in it.
Nate changed things for me/us. I went from being KS3 science coordinator and assistant head of year to being parent/ carer/ nurse/ therapist. I'm not going to lie. It was a bit of of a contrast. I had tried to go back to work on a much reduced contract, however, because of Nate's frequent hospital stays and his very short life expectancy I resigned. This led to several life changing events;

- debt
- loss of our house 
- loss of earnings
- me feeling pretty shite due to a sudden lack of identity

Who was I? That's not meant to be a pretentious sounding question. I genuinely mean I floundered trying to find out who I was. I felt like I constantly had to explain why I didn't work. To justify my existence and role in this society that refuses to acknowledge the position and responsibility of carers. I struggled. I had no self worth. The money issue paled in comparison to the fact all I did was look after the kids and house. It's not what I expected from life. I was brought up by hard working working class parents and gained an "assisted place" to a top notch private girls school. I'm a bit of a contradiction, but have no regrets and nothing but admiration for the amazing women I had the pleasure to study alongside. Many have battled their own demons and struggles and fought to be where they are today. Many have contacted me to help with info, research, and support with Nate. Others are just forthright with a friendly face, cuppa tea or bottle of prosecco. There are flaws with the private school system but what I can say is we were encouraged and pushed to succeed. It was always made abundantly clear that we could do anything we wanted to. Gender was inconsequential. A world away from what we see frequently in advertising and marketing of toys clothes and games. I would love for my daughter to attend my old school for the positive attitude towards success and achievement for women which is still lacking in many state schools today, and made murky by the media and advertising. 

But what would I do if I actually had money? Sometimes I fantasize or day dream about how I could make things a little bit easier for us as a family. I'll be honest I'd pay for an overnight carer every bloody night of the week. Oh how I love sleep. It's amazing. I'd pay privately for a Physio and OT and fund every bit of equipment we needed without any need for referrals, waiting lists or arguememt about what Nate needs. I'd buy a flat/ bungalow or extend our bungalow and fund carers to support us to care for Nate when/ if he gets older. I'd fund wrap around childcare ( impossible for most SN parents) for Nate, and continue doing what I want to do, what I do for me, just me and no one else

Work

Guess who's back

Yeah yeah, whatever, so it turns out I couldn't stay away. Just shush. 

The SN blogging community has been in turmoil with accusations and assumptions regarding speaking for our children and over sharing. My blog started as a means to balance my mental health and to vent my frustrations at the world. My blogging needs have changed over time, It's become less about venting or the "injustice of it all" and more about education, access and acceptance. As I return to the blogging world it is with these things in mind. What I won't be doing is sharing anything about my daughter. She doesn't want that, and I respect that. Ultimately I need to remember that I blog for me, and no one else. 

What I must do is mention that the SWAN UK community has been rocked by the recent passing of Ethan, Rufus and Olivia, and earlier in the year by Alanna and Jack #saytheirnames, each leaving a devastating hole in the lives of their families and all who knew them. This means that three of my SWAN drinking buddies have had children pass in the last year- Liz, Nicky and Cindy. I think about them all the time. 

Many of us know, and to a variable extent acknowledge that our children will not reach adulthood, others suffer a sudden loss, neither is an "easier" path. All any parent wants is their child to be there with them. Memories are more valuable that the richest stones or the biggest house. 

This leads me on to Sally Philips' programme on Downs Syndrome. I didn't  watch it. I don't want to. Apparently it highlighted the joy a child with SN and their family can feel. It made people rethink the idea of "quality of life" but what it also did was demonise people who did choose to terminate. I'm not even thinking about those late terminations, I just can't. Although the program sounds overwhelmingly positive I have a few issues : 

- firstly I'm pro educated choice. Which means I'm basically for whatever a woman decides once she knows all of the facts around the pregnancy and birth. This means that Down Syndrome needs to stop being talked about in hushed tones as if it's the end of the world, that women should be shown how fulfilling their child's life could be, but on the flip side shown the more severe end of the spectrum and what that can mean. I have read so many posts from families of children and adults with the syndrome who feel only the higher functioning and more able individuals are talked about and shared as examples on TV and social media. 

- we need better education and awareness of special needs. As a society we are under pressure from the media to see disability and illness as a "burden". That's a hard mantle to shift. Without a broader outlook on life we can never accept difference as normal. Yes that might seem a contradiction, but it makes sense. 

-we need to start accepting that while Down Syndrome is the most common chromosomal disorder it's not the only one. There are many other children and adults out there waiting to be understood and accepted. 

- I don't think anyone should comment on who chooses to go ahead with a pregnancy and who doesn't, unless they've been there. It's not a situation you want to be in. I didn't have that choice. Thank fuck. Apparently Nate was "fine". Shows what they know. And to this day I don't know what i would have done if I did know. I can just imagine my face in hearing "well your child won't walk or talk, will be fed through a tube, will stop breathing every night and require ventilation and we don't know how long he will live for, what do you want to do?" I'd love to say I would have gone ahead with the pregnancy but if I'm honest I really don't know. Nate has changed me. The me now would have been ok with it and gone on to savour every snuggle, but the me then was a bit of a dick to be honest. I knew nothing about disability or dealing with medical needs and I would have thought I lacked the confidence to do right by a medically complex child. To be clear I value every day I have with my boy and I want everyone to know how much he enjoys life and how much he gives back. He's an absolute joy. I worry people might think we have it rough, but believe me facing losing him is far rougher. I have absolutely no regrets. Empathy yes please, sympathy no ta. 

- we also need to be honest about how difficult it is to access therapy and supportive/ respite services. I swear I thought if you were struggling that people actually wanted to help! This links back to the lack of confidence I mentioned previously. I suspect had known the huge battle we would have to access adequate services and provision for the whole family I may have thought it all beyond my capabilities. 

Anyway, so me, I don't plan for the future. I plan for now. Or maybe the next 12 months. This is an improvement, it used to be month by month, so uncertain and precarious was life for Nate. This uncertainty we live with means that assessments and funding need to be allocated without delay. Needs change over time and this must be met with urgency. Some things can't be "put off" or delayed, and there is no excuse for inadequate or incomplete assessments. We need what we need. We don't lie, we don't exaggerate. To be totally truthful we don't actually want help, but when we realise we need it, we need it fucking now. And when faced with an uncertain future we really fucking need it now.