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More on Vision

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Now that we know Mikaere’s eyesight is worse than we originally thought (See the post titled ‘To my son I’m a giant blob‘) we can introduce things to help.

Now that it’s dark in the afternoons, I set up light shows for him. We were gifted this amazing black carpet/fibre optic amazing whatsit that has little lights on a black carpet that change colour (<3 Alexander x). We also have a set of fibre optic cables that came from a charity. Sometimes he’s interested, sometimes he’s not. We were told by his vision therapist that if he looks at a anything, that’s a win.

We’re also trying to introduce single bright toys against dark backgrounds in the hope that it helps. Portage bought around this great moving wooden duck that waddles very very slowly down a slope. I’d hoped he track it, and he kind of did the first time. We showed him a large light tube at vision, where the light moves down the tube, super slow. Again, tracked it, kind of, the first time.

Now he won’t. Is it because he can’t see it? Is it because he’s not interested? We wrangled a dark backdrop up to work as contrast to be be honest, I don’t know what’s working and what’s not.

I struggle with this, because I know vision, focusing and following is the basis of most physical developmental movement. So many movements start with looking, with motivation. And if he can’t see and he can’t hold and doesn’t have the motivation to see, which then moves into a lack of reaching or touching, what does that mean for him?

We’ve already seen that his little left roll is not a neurotypical roll, because he’s not starting it with his arms outstretched, as he reaches for something. He tucks his arms in, to keep them out of his way and leads with his knees instead. A bottom up rotation, instead of a top down.

So, working on vision. At least the lights are pretty.

On the Emotional Struggle

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There was an article I read a while ago, which was shared all over the special needs community. PTSD Helps Parents Keep Their Medically Fragile Children Alive — But At What Cost?

It was validating, I guess, but not super helpful. The main point is that the ongoing strain of the special needs life causes intense stress resulting in PTSD. There was a comparison that treating PTSD in special needs parents was similar to treating it in service members engaged in active combat.

However, the ‘how to deal with stress’ or PTSD advice was low on the ground, or as the article put it: there are ‘financial or logistical barriers’ to carers receiving care.

And I get that. I don’t know when I’m meant to fit in self care in Mikaere’s day (don’t tell me the line about how important it is, because I don’t want to hear it – I already KNOW it. Not knowing how important it is not my problem). Truth: I also don’t have the funds for the care, or the funds needed to pay for a nurse while I go to do whatever it is. Just as a comparison: I have had my hair cut exactly twice this year, both times when I was away without Sam and Kai, that I saved up over MONTHS for. If I can’t manage a haircut while taking care of Mikaere I couldn’t see myself managing regular therapy.

(Side note: I want to clarify that we get couples therapy through our hospice, specifically to tackle bereavement and the special needs life. Our therapist comes to us so we don’t need to worry about care for Mikaere. It’s also paid for by our hospice, which we’re grateful for. But a session every few weeks is helpful when you’re in a safe space and maintaining, but in our life too much happens for us ever to get to the ‘maintaining’ part of things. We’re always tackling the next crisis).

Thing is,  I cycle through the occasional periods of ‘I’m fine, look at me do all the things’ with the debilitating downsides of extreme and chronic grief and depression. I’m going to pause here for a moment, because it feels weird to admit this at large to the internet. But the truth is, children have died. Many children, that we knew and love. My child will one day die, and I don’t know whether that’s soon, or not soon (both realities are inconceivably scary). If you add in the sleep deprivation from around the clock care, and the relentless day-to-day appointments and therapy, I think extreme and chronic grief and depression is an appropriate response.

The thing is, when I’m so down, doing anything other than taking care of Mikaere is tough. (Side note: I will never be so down that I can’t care for my son. He will always get the meds and feeds and care he needs, because idea that his already limited life should be anything less because of my feelings is impossible and will not happen).

I just… I feel like my emotions are raw, just under the surface all the time. It comes with all the shame and guilt and feelings like I should be better at holding it all together. I should be better for Mikaere. (To be clear, again, in case any stranger on the internet feels the need to DM me with their concerns  – his needs always come ahead of mine, because if they don’t he’ll go into a seizure coma and die. Even in my deepest darkest abyss, I’ve will never not be able to take care of him).

You guys… so many children we care about have died. I talk about this all of the time, but I’m really struggling with it. There are big gapping holes in my heart. My child is so disabled and his disorder is terminal – the phrase ‘all is right with the world’ will never again be relevant to me. I’m constantly fighting for the next thing, constantly trying to figure how to get more for Mikaere, how to keep our little ship afloat, keep him happy and healthy. How I’m meant to hold on to the happy when our day to days are so stressful is beyond me.

I’m at a loss. I feel like I basically need to find another outlet for my emotions. I think about the gym. I think about more 1-1 therapy. I think about how we’re a single income family and how I’m meant to find time and money to do these things and the idea of finding time in Mikaere’s schedule and organising care… it seems impossible.

And then I mentioned it to our Homestart Worker. Homestart are charity, and they have a therapist who does pro-bono sessions.  And now I’m set to see a therapist. I’m nervous, not really sure about how it’s going to go. I’m also really nervous about unpacking all the feelings from the last three years that I’ve packed waaaay down so I can get on with my day to day.

I’m scared to stay where I am, in the infeasible present, and I’m scared to start therapy, and facing the giant mess of grief I’m holding tight. I don’t fully understand how people navigate the world of pallative and grief and special needs without crumbling. The last three years have been so brutal. Facing more years seems huge (and idea of not facing more years seems impossibly crushing).

If someone has a magic wand they could wave, that’s the solution I could use right now. (Or you can fundraise/donate towards a cure. I’m shaving my head for NKH research, so yeah. Donations would work too).

 

On AFO’s. 

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Sometime last year, our physio mentioned AFO’s – Ankle Foot Orthosis. We were using trainers + leg gaiters to help with free standing (I say ‘free’ standing, but what that really means is that we hold Mikaere up, rather than him standing in a stander).

The trainers were to stop his feet over pronating (meaning: the arches of his foot rolled inward), and the gaiters to help maintain knee extension (meaning: he can’t lock out his legs, and use his knee to keep his leg straight).

But, she thought that AFO’s – like a hard sandal that has a back that goes up to the calf – might help his standing without the need to fix his knees.  Mikaere is also showing dystonic posturing of his feet into an equinovarus position (pointing down and inwards), and the idea was that AFO’s would offer him more time with his feet supported in a more neutral position.

We’re lucky that we’re part of a tertiary hospital that isn’t currently suffering from funding issues thanks to private funding, which meant that with a referral letter from our clinician and a letter from our physio, we got the thumbs up for AFO’s. To be clear: our local community hospital wasn’t going to fund them. So we’re grateful!

They’re custom made for Mikaere – his feet were covered in plaster and the AFO’s made from the mould. We use them most days during physio-like activities, and sure enough, they help keep his feet in more neutral positions and definitely make standing easier!

They’re another set of supports in our kit. At this point – it’s heart breaking knowing my baby is almost two years over the point where most kids learn to stand. It’s unlikely he’ll ever it do it by himself, without support.

I also know that if he doesn’t stand, if he doesn’t bear weight through his legs, his hip sockets won’t form and he’ll be at risk of hip sublaxation (where his hip is partly dislocated) and/or hip dysplasia (where his hip socket isn’t formed correctly, which doesn’t hold his hip joint in place).

I know that both those options can be painful, and awful. I’d like to avoid that. So, standing. As much standing as we can do. To be honest, it’s not a lot. Finding time in our days to fit standing in isn’t easy. But every minute counts. So some days it’s kneeling against me across the back of the couch, and some days its in the stander, and some days in ten minutes in the AFO’s.

We do what we can, hey? We’ve picked a fun blue camo, in the hope that it will make them more ‘fun’ to use. Sigh. Onwards we go.

On grief and hearts

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I think it’s pretty clear that I took a break from posting over the last few months or so, Mondays post being the first one in a while. Part of it was there is so much shallow influencer content flooding my social feeds. Highlight reels, objectifying consumerism or cute photos of kids in exchange for more more likes and more followers and free gifts with hastag-ad. It was the season, right? Matching pjs all round?

Truthfully – I really struggle with that kind of privilege. It’s difficult to watch when kids we know are dying (literally, in intensive care and funerals). I needed the social media break, because when you’re faced with literal death, when there is child after child who gains their angel wings I can’t care about someone else’s need for vanity metrics.

Side note: if a grid with a beautiful aesthetic and #sparkJoy hashtags are your jam, that’s cool and I’m happy for you. Different courses for horses and what not. There is no justifications or apologies to anyone required, you do you.

But for me? When faced with frequent death and grief, I want to see authenticity, and real, genuine moments that connect. Things that are meaningful, and matter and bring *real* joy (and not someone exploiting their kids for free kit with shallow, carefree #blessed captions. There’s a difference between reading about a child reach a milestone they’ve been working towards for months and months and months, and a posed kid atop someones shoulders with a #love hashtag).

I recognise that I’m in my own unique little place though. The grief has been relentless and never ending. It could be that we live exposed to the world of paediatric palliative care. That the people who bring us the most comfort are the people in our tribe. The people who live our lives, who understand exactly the kind of emotional hardship we’re in.

They’re also the people with children who are destined to gain their wings early. And as much as all our professionals keep suggesting we ‘step back’, I don’t think they understand. We can’t stop going to therapy, to playgroups, to hospital waiting rooms or to hospice. There is no ‘stepping back’ from our life. Hey ho. We take the love and the support and the connection from people who get it, and the price is that we love their kids, and we’re there, in shared grief when they pass. And they’ll be there for us too, one day. When it’s our turn.

There’s this thing I do now. I ask how people’s hearts are. It’s an invitation to share their emotional state, and it’s an offbeat enough question that you don’t get ‘fine/okay’ platitudes as a response. And despite what our professionals suggest, I do genuinely want to know how people are. I want to know if they’re happy, I want to know if they’re struggling, I want to know how they are. Their day to day truths, if they’re open to sharing.

Partly it’s because I love them, but a lot of is because people have stopped talking to me about the hard things in their lives. Or the positive things. Their kids first day at nursery, or a milestone they’ve hit People don’t feel like they can share because their joys might be insensitive, or complain because they compare their hardship to mine and as a perspective it sometimes trivialises their hardships. But just because my life is hard doesn’t change their hardships, or their difficulty or their joy.

And when people stop sharing their life with me, suddenly everyone I know has lovely picture perfect, shallow lives that are just fine. Everyone is living their most perfect highlight reels. Which is great, but without that camaraderie that happens when people share their reality with you, I’m isolated and alone without any real genuine interaction and connection.

At Mikaere’s playgroup, after we sing the hello song, they encourage him to hit a switch that plays a recorded message. The message that comes out is always “I’m fine” – bright and cheery and so awfully inauthentic. And I hear that, when I ask someone how they are. They always say ‘I’m fine’ with that awful and fake tone. If someone is diverting conversation, that’s okay, I would never challenge it (because respecting boundaries is important!) but I like conversation that forms connection. It doesn’t have to be deep and meaningful, but I’d like it to at least be real.

Part of it also is that if I’m asking about someone else, I’m not talking about my life, or Mikaere’s health difficulties (if we get into that, no matter how matter-of-fact I say it, our day to day is horrific and out of the ordinary. Social etiquette requires the only polite response is to acknowledge it and express sadness, which usually comes with pity and discomfort. At that point I’m comforting them. That’s not a nice social connection, but it’s one I’m playing out over and over and over again).

Talking about their heart, their joys and fears and the small things that they care about, it makes me feel less… alone, less banished to the special needs world.

So. How’s your heart?

On the Walker Saga

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The thing with having a child that can’t be upright by himself means that every time Mikaere is upright, his legs are strapped down. Every time. He’s entire lower half is static. Can you even imagine?  That to upright independently, you have to have your entire body from the chest to your toes strapped down.

This means Mikaere has never been in an upright position and realised he has ankles. He’s never had the opportunity to understand what his ankles are, when he’s upright. To realise what his legs are for.  Or realised that if he locks his knees he could stand.

There was also a theory, once, that if Mikaere learnt he could move his legs, realised he had mobility and ankles and knees, he might begin to weight bear. Maybe (this is very long long shot).

So I looked around at equipment that might be supportive for his trunk (because obviously he’s going to need support) and have his legs free, and I came across gait trainers, or walkers. They’re exactly like what they sound – exactly like those little walkers you plop babies in so they can move their feet and go – except instead of fisher price it’s a full on piece of therapy equipment.

I convinced our NHS physio that it was a good idea to try, and she said no harm. So we tried a walker. We organised a rep to come out and fit it and put him in it.  You guys. Nothing in the sky aligned for us.

Mikaere refused to nap and he’d a load of seizures so already we were on the back foot. Coaxing Mikaere into the walker, sans nap, into a completely new experience was both fine and heartbreaking.

There were moments were he was happy. Holding his head up, curious about what was happening to his legs, the freedom and movement, but when he realised he couldn’t get out of it, he screamed. Big tears, very unhappy, completely helpless, frustrated that what he wanted (out) he couldn’t do himself. Proper, loud, distraught screaming. Back arching, over extension. Rage. Screaming.

I hate it when he screams. I hate it when we’re trying something and we go too fast, or it’s too much and I can’t anticipate it and he just, it’s too much. Screaming. It hits me right in the heart that something I pushed for has caused my baby to scream like that.

I pretty much tore through the straps to get him out out as quick as we could, and comforted.  We cuddled and sang songs and coaxed him back in. Fine for a few minutes, not fine after that.

Essentially I called it after the third attempt. My aim was to see if we could put him in a supportive position to teach him how to weight bear through his legs himself. Or even, teach him that his legs are helpful for weight bearing, for standing. To see if he had any inclination in propelling himself forward with his legs. To teach him he has ankles.

Turns out he wasn’t keen. We had a talk about how neurotypical babies learn, but things like a baby doorway bouncer or a baby activity ring, they don’t have enough core support for him. Our NHS physio basically said they wouldn’t fund it. He didn’t show enough forward momentum for him to show that it would be beneficial. Womp.

We talked about standing slings, to see if I could suspend him from a doorway (like a doorway bouncer without the bounce) but the hoist company wouldn’t sell the sling to a family without a hoist. Our plan was to suspend it from a pull up bar in the doorway, knowing full well that if it could hold Sam’s weight it could hold Mikaere’s. But no go. (I did, later, try suspend the upsee vest from the pull upbar, but it makes him lopsided, head forward legs back. Not what I was looking for!)

And so I mulled on it. And thought about it.  And then I mentioned to our private physio what I was thinking.  See, the difference between our private physio + our NHS physio is that she has the time, and space and freedom to try different things. She isn’t bound by KPI’s, or the weird NHS culture that our other (lovely, completely competent and wonderful) physio is.  She’s also knows Mikaere well enough to know what he’s like on a bad day, and how different he is on a good day.

So, we tried again, privately. I’d look at private funding, but first we’d get the rep out and see him again in a walker.

It was 100% a different experience. We went slow. Spending a good few minutes looking at the walker, touching the walker, going in and out of the walker. Feeling his feet, on the carpet, on the tiled floor. Feeling his weight move from the front of his foot, to his heel. Literally holding up his head in our hands, his hands exploring the conveniently placed ring for holding onto.

What a different experience. He didn’t love it, he tolerated it. But – BUT! He was using his ankles, weight was going through his feet. There was definite learning there, figure out how and when and what! If the goal is for him to be more aware of his body, to learn he has ankles and to strengthen those muscles and maybe, one day (extreme stretch goal), weight bear independently, then this session showed he could.

So we pushed go. I got funding, and we said yes please to the rep company, Jiraffe. We would like a small pacer please. In speedy purple. Could we please have a quote? It took a while for the funding come through, but it did (thank you, Elifar!) and when it had, unfortunately Jiraffe had upgraded to a new walker that wasn’t quite as appropriate for Mikaere. They only had the demo walker left.

We’re not precious, so we asked if we could purchase the demo version. There was radio silence on Jiraffe’s end, and when they came back, blow me over with a feather. Because Mikaere’s condition is terminal, they would like to GIFT the demo pacer to Mikaere! Oh my days! We were so grateful, so so so grateful and accepted.

And now Mikaere has a gait walker. It’s beautiful. He’s tolerating it for longer and longer periods (it helps that his vision has improved and he now watches TV. The walker puts him at the right height). He doesn’t throw his head back anymore, and has learnt to hold his head forward (which means we don’t need to hold his head!). He’s beginning to understand the concept of taking steps (with a lot of support, not independently!) but mostly, he’s feeling his legs and his ankles upright, free of straps. He moves his legs, moves his ankles, and that’s everything. He also smiles when he’s in it, which is everything.

So, onwards we go. Upright, with feet free. With Disco parties in the hallway. We’re doing it!

 

Introducing: The Chicken Nugget Challenge

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Last year we organised a 12km charity run that was wildly successful*. But, when you say you’re doing a 12km there is a definite barrier to entry. Not everyone wants to run 12km. So, to kick off the New Year, we wanted to introduce something anyone, anywhere could. A bit of silly fun to raise funds for NKH Research.

Introducing: the inaugural NKH Chicken Nugget Challenge!!

(I said it was a bit of silly fun, right?)

Here’s how it works:

1. You sign up to the justgiving team (#linkInBio)

2. You pick your level Supreme (100 nuggets) or Extra (50 nuggets).

3. You get each nugget sponsored, and have your friends and family donate to your just giving page. Supreme- 100 nuggets, sponsored at £1 each nugget. Extra – 50 nuggets, sponsored at £2 each nugget.

4. On the 29.02.20, you source your nuggets, and eat them following the rules.

5. If you can not finish your sponsored nuggets, you must donate an additional £1 per nugget not eaten.

If you’re in London, you can come join us in a SW London location (TBA!) to consume nuggets all together, or if you’re not able to join us – you can complete your challenge at home, or wherever is convenient.

Them rules:

1. Each nugget eaten must be sponsored, each participant must raise minimum of £100.

2. You must eat all your nuggets (as long as common sense dictates its safe to do so)

3. You can use as many sauces as you like

4. You source (and pay for) your own chicken nuggets (100 is £20 from McDonalds, conveniently delivered by Uber Eats, or your can pick some up from the freezer section of your local supermarket to cook at home)

5. You must not leave the table till you finish your nuggets or you yield (there is no time limit). If you yield, you must donate an extra £1 for each nugget not eaten.

6. You can be anywhere in the world, as long as at some point on the 29th of Feb you eat your nuggets, it’s fine!

7. You must take a fifteen second video (on your phone, landscape please) of how you’re feeling every ten nuggets, and upload it to a shared folder (as we will mix a quick promo video for sharing).

8. If you post anything to social media, you use the hashtag #nkhChickenNuggetChallenge

9. You must raise your funds for Joseph’s Goal.

Are you interested? Join us, we’re eating nuggets to raise funds for NKH Research!

More info: teammikaere.com/chicken-nugget-challenge

Sign up: https://www.justgiving.com/teams-creation/join/3f4c52de-50ea-47f5-87f3-75f002f08792

#linkInBio #chickenNuggetChallenge #nkhChickenNuggetChallenge #makingChange #nkhResearch #nonketotichyperglycinemia #ifhnkh #nugget

* By our little family fundraising standards. We were very pleased!

Hello 2020

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Another New Year, here we are! We did it! Another year! It’s a tricky one, New Years. I feel like I want to pause, and I’m not really ready to roll forward into 2020.

Truth is – I’m scared about what this year will hold. Will 2020 be the year Mikaere dies? Will it be fraught with hospital admissions, and seizures and pain? Will it be the year we see a slow deterioration? Will it be the year I peer into his crib after the sat’s monitor has gone off, and he’s passed?

I’m in that space, the nervous and anxious anticipation of what I’ve been so brutally primed for. This fear, it holds me tight.  I’m in a holding pattern, really.  Waiting. It doesn’t matter how much I put on a brave face, or how grateful I am or how much I live in the present. One day my son will die and there is literally nothing I can do to stop it (bar fundraising, which feels like crossing my fingers and hoping – but I’m holding on to that hope, gripping it tightly in my hot little hands, scared to let go, hoping for a miracle).

Looking  back at 2019:

Mikaere celebrated his third birthday this year, for which we’re grateful. His head holding has really come along, and he’s as cheeky as ever. He loves the drums and singing and company. Bubbles and banana yoghurt are wins, spaghetti bolognese and tummy time he does not love. He is very very chatty when happy. Mikaere is very wriggly and the king of 2 minute power naps. We also took Mikaere Ice Skating and he stayed a whole week on respite at hospice with his Grandparents.

Therapy still remains a huge part of his day to day, with 11 different regular sessions (Physio, OT, ABM, Yoga, Hydrotherapy/Splash, Vision, SALT, Portage Play Therapy, Osteo) and weekly visits to Small Steps + the Vision Sensory Playgroup. We hope to add hippotherapy in the new year!

He’s had 556 Seizures (and managed a whole 8 days seizure free!!), 228 vomits + has night nurses 3-4 nights a week. We’ve managed a whole year with NO hospital admissions (woohoo!) + only ONE A&E visit! He’s had over 400 therapy/medical appointments across 8 different centres with a combined team of 30 different professionals.

Fundraising wise we’ve had a great year. We raised over £40k for NKH Research in 2019 – bringing our all time total up to over £143k – a phenomenal amount that gives us hope. Thank you to everyone who donated, organised and attended our events and fundraisers. We love you!

It’s huge to know how many people have run marathons (or 12kms!) and cycled, and drank wine or painted art or had a drink or hosted a games night or bake sale or or or (I could go on).

Looking forward to 2020:

If I’m being truly hopeful, what I’d like is for Mikaere to be in a clinical trial for NKH Gene Replacement Therapy (please universe, line up all the dots and fast track it through. Please make it happen). And while that is what my heart is pleading for, a future with my son where he doesn’t suffer, I’m realistic enough to know that instead, I hope for happiness for Mikaere. For a year with less seizures, more development, and more joy. More happy smiles, more cuddles and more belly laughs. That he’ll become more mobile, and ever so slightly more independent.

We’ll see. Please be kind to us, 2020.

Merry Christmas!

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As we settle in for Christmas Eve, we want to wish you a safe and calm festive season.

We know that moments of joy are precious and fleeting, and that Christmas isn’t always the jolly affair our highlight reels make them out to be.

For our friends who are on the ward, in ITU, and for those that are facing another milestone holiday with a gap in their hearts, for those that are alone, and for those whose families are on the other side of the world: we’re with you. We send love and strength and grace for managing all that tomorrow brings.
We love you. Merry Christmas x

On friends running the Dublin Marathon

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Today Shane, Maria and Kevin ran the Dublin marathon for #TeamMikaere and Joseph’s Goal.

Shane’s son Rauirí and Mikaere are friends from our local special needs playgroup. There is a lot of love between our families, we have an incredible amount of time for them.

Shane (and Maria and friends!), running for us today? That’s everything. They wore Kai’s name across their chests and ran 26.2 miles. A phenomenal achievement. Even more so, apparently one of their party injured themselves half way *and continued* still crossing the finish line. That level of determination is admirable.

They’ve also raised a whopping £2k for NKH research, and if I’m honest, that feels personal. That feels like over and above, and we’re grateful. Heartwrenchingly, overwhelmingly grateful. So to the Hoynes: thank you. Thank you thank you thank you, genuinely.

If you’d like to support this amazing achievement they’re fundraising on justgiving at: https://www.justgiving.com/fundraising/shane-maria

On making the boot work

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Fuck. I was putting Mikaere into his car seat when I felt his gastrostomy button pop out of his stoma. I heard his stomach contents dribble out and – fuck – was my first thought.

It was raining. It was just me and Kai and we were in the back streets of an unfamiliar suburb. I did a quick search, and sure enough, the nearest changing places facility (basically, a public toilet with a changing bench bigger than a baby changing table) is just over 15 miles away. Blah.

Mikaere’s button pops out all the time, and usually it’s no big deal. But we’re 40 minutes from home and I know he can’t have the button out for that long without it beginning to close. (Considering it was surgery to put it in, closing is not an option).

So, I do what I always do when I’m in a tight spot, which is move him to the boot of the car and take care of it. So I do, changing him, deflating the button and putting it back in with the gear we carry around with us in the emergency bag.

But I think how undignified for him. How cold and uncomfortable and just – not ideal for all of this to take place in the boot of my car, with the door pulled low to keep out the rain.

But the thing is, there aren’t enough safe places around where I could change him. Places with a long enough changing table to make it safe. Baby changing tables are everywhere, but they’re too short for him.

As I change him out of his vomity clothes, I think how awful that the quick, easy solution is here. Where anyone can walk by, where the breeze is cold.

I hate this. I hate that this is our life. The special needs life is just awful. I’m glad it was quick, but I wish we had the facilities nearby to manage without resorting to the boot of the car.

Also, as he gets bigger, the boot of the car isn’t going to cut it. What are we going to do then?!