The day we walked to Bloom to test out a toilet

The Sanctuary Nurture Garden
The Sanctuary Nurture Garden

It was a sunny bank holiday Monday, we were planning to go to Ireland’s biggest flower, family and food festival, and I hate traffic jams. But we had to go, because I’ve been publicly campaigning for Bloom – as it’s called – to hire a Mobiloo, a mobile changing places toilet for children and adults like my disabled daughter B.

The solution? We walked. Obviously not all the way, but I left my van outside the Park where Bloom is held, and walked the last 1.2 km to the entrance, passing many cars on the way 😀.

After we’d paid in, we were handed a leaflet for Mobiloo, surely a good sign?

But we hadn’t traipsed all this way JUST to use a loo, so we had a look around first.

B associates outings with food, so we headed straight for the Food Village, and she really impressed me as she tried jam on bread, ham and wild Irish tuna. (She even helped me to finish a fancy hot dog at lunchtime.)

Then we both danced to strains of the Kings of Leon, sheltering from the sun under the Food Matters awning while drinking Innocent smoothies.

She loved the buzz in the Food Village, and I swear she was absorbing chocolate and sugar through her pores.

The Muffin Man

By contrast the atmosphere in the display gardens was almost reverential, and since B couldn’t see much apart from other people’s backs, the only one that interested her was the Mamma Mia Garden, because there was music and activity, of course!

Mamma Mia Garden

We also had to stop by the entertainment stage, and caught some fabulous performances by young stars from the Leah Moran Stage School, sustained by coffee and carrot cake from The Coffee Shack , which did not disappoint – as usual.

Leah Moran Stage School

Finally it was toilet time, and we searched for the Mobiloo: and it was such a welcome sight when we found it. Michael and Graham from the Mobiloo Ireland team were so friendly, and the facility is small, neat and totally amazing: a toilet with a changing bed and a ceiling hoist – the vital toileting facilities that are not provided by a standard disabled toilet (just bring your own sling): It’s very simple, but its availability will transform lives, and I look forward to seeing it at other events soon.

Mobiloo at Bloom

Note: I hope this doesn’t read like a review, I wasn’t asked or paid to write it, and I paid to get into Bloom. I wrote it because I believe in the importance of spreading the word about changing places toilets, including Mobiloo, and how they can improve inclusion for disabled children and adults.

 

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Reasons to be Cheerful 1.6.18

Once again May was a ridiculously busy and sunny month, and I spent far too much time cooped up in a hot car driving to twelve big appointments for the two young adults I care for, formerly known as my two younger children. All these appointments took place during the hours when B is supposed to be attending her adult day programme, or my ‘time off’ as some people mistakenly describe it! I’ve also been distracted by other issues, but today I’m back with a positivity post 😀.

1. Funding for B’s day programme that she loves has been confirmed for another year. It’s not been made permanent yet, but I will keep hoping.

2. A few firsts – B voted with assistance in the recent referendum, she attended an inclusive Zumba class, and she thoroughly enjoyed being pushed around the inaugural AsIAm 5 kilometre Run for Autism. As you can see.

As I Am 2

3. I baked for the first time in ages, a healthy carrot and banana bread recipe that I clipped from a newspaper. It was delicious.

Banana and Carrot bread

4. As a lone female householder, I regularly get ripped off by the people I pay to do the endless maintenance jobs that are needed to patch up this old house. This week I got fed up with waiting and fixed a badly done job myself. It seems all I needed was a screwdriver and a paintbrush – to be used separately though! It’s good to feel competent occasionally 😍.

And that’s it for another week, hope you have a good one xx

R2BC at Mummy from the Heart

When you wake up tomorrow #RepealThe8th

B, Disability, Abortion, #RepealTheEighth, #Together4Yes,

This is how my beautiful disabled daughter greets me most mornings when I wake up. She loves me and trusts me to protect her. And I will always do my best. But I cannot protect her from the provisions of the 8th Amendment to the Irish Constitution. Especially after I’m gone. It frightens me stupid that so many terrible things can happen to disabled children and adults when their carers can no longer care.

And if the worst should happen, and she is sexually abused and made pregnant, what happens then? In Ireland today the tiny beating heart of a foetus is more important than my living breathing daughter. Even though her body may not be able to cope with pregnancy. Even though her mind will not understand. Even though any child conceived may not survive.

Many on the anti repeal side keep saying that the 8th amendment does not affect healthcare, and perhaps it shouldn’t in theory. But in the real world, it does. Women’s lives have been turned upside down. Some have even died.

Will anyone notice if she gets raped and pregnant? Will anyone make sure she gets whatever medical treatment she needs. If she needs an abortion, will anyone take her to England risking a possible prison sentence of 14 years? Will the State even allow her to leave as she lacks capacity?

My beautiful happy trusting daughter will be dismissed as a hard case by the anti repeal side, a statistic, collateral damage in their war against abortion. Because she doesn’t matter to them, because some of them don’t love both, don’t care once a baby is born alive. Or even if it’s not.

So when you wake up tomorrow, please remember my daughter. Please vote yes to repeal the 8th amendment. Because the next hard case could be your sister, your mother, your partner or YOUR daughter.

And once the 8th has been repealed, let’s make a start on making Ireland the best place in the world to have a baby, the best place in the world to bring up children, and the best place in the world to be a parent. Let’s provide ALL the supports and services that families need. And watch the abortion rate drop. That’s how we should love both.

Apologies if you received this twice, I’m experiencing problems with wordpress.

 

My healthcare and the Eighth Amendment

Ireland's Eighth Amendment

I always thought the Eighth Amendment to Ireland’s Constitution was just about abortion, but apparently I was wrong. The healthcare implications were news to me apart from Savita Halappanavar’s tragic death from sepsis after she was refused an abortion. And yes, I know that Healthcare Professionals disagree over whether an abortion would have saved her life, but more treatment options would have been available to her medical team without the restrictions of the Eighth Amendment.

And since then I’ve read about many more women who have been affected by the Eighth Amendment on the In Her Shoes page on Facebook. It got me thinking about my three pregnancies and births, and whether they were affected too, and this is what I remembered…

On my first pregnancy I developed a breast lump. My consultant told me he didn’t think it was malignant, but advised removing it during the second trimester, because that was the safest time. I had the operation, and the lump was benign, so then why was a breast cancer counsellor sent in to me the night before the operation? At the time I thought it was an hospital error, now I’m not so sure.

My disabled daughter B was born at 26 weeks, 2 weeks after my waters broke. Three days before she was born I began getting pains and the waters began to be tinged with pink. From reading an article this week, I now know that this is a possible sign of septicaemia, but my memory is that nothing was done until I began dilating properly, just a few hours before she was born. I wonder now what would have happened to both of us if labour hadn’t started?

Then there was the difficult birth of my youngest. A back to back presentation – known to be particularly painful – didn’t help.

But this time I had a birth plan. It involved walking around during labour and pethidine for when things got difficult – pethidine had successfully helped me to cope with the gruesome aspects of B’s birth.

However the plan was ignored. I was not given pethidine. I was told their gas and air ‘was different’ and given that instead. And it made me sick and dizzy as it had on my eldest, but I kept sucking at it as the pains quickly spiralled way beyond my ability to cope. When I begged for an epidural, it was denied. I was told it was ‘too late’. The next hour is almost completely blank. Apparently I ‘lost the plot’ and refused to push until I got an epidural. Eventually the midwives gave in, and summoned the anaesthetist and consultant who pronounced ‘this baby is deliverable’ and so it was. But could things have gone differently? Was I denied the pethidine because of any possible effects on the baby? Even though I knew it was the best pain relief for me? Could something have happened to youngest if no epidural had been given, and I still didn’t push?

I was lucky. I recovered well from all three births, as did two of my children. B was not so lucky, and what happened during her birth may have caused some of her disabilities. But that’s a story for another day.

Did the Eighth Amendment affect the healthcare I received during pregnancy and childbirth? I’ll never know for sure, but I certainly don’t want it to affect any healthcare that my daughters may need…

 

 

Conversion

It’s been a week of achievements, but I was finding it hard to convert them into cheerfulness. And then Saturday happened.

It began around 6am, as usual. Followed by a tough but enjoyable Parkrun at 9.30am.

Parkrun May 12 2018

Home again to collect youngest and head to his activity, B and I eating a packed lunch in the sunshine with good company again, while we waited.

Then back home so B could use the toilet, and gathering everything I needed to help my friend run the end of year party for all the special needs children and their families at the Rainbow Junior Arch Club. Exhausting but rewarding.

Finally there was an 18th birthday party of a family friend and BOTH my younger two came with me. We weren’t able to stay that long, but long enough to enjoy the pièce de résistance, a delicious birthday strawberry and white chocolate cheesecake 😍

For all this to happen I had to get my daughter and her wheelchair in and out of my van 16 times in the one day and hoist her 10 times (on my own which is illegal for anyone else).

More proof of why I need to keep fit and strong, so I can continue to give my disabled daughter and her siblings the life they deserve.

The rest of the week consisted of a bank holiday and four days of appointments, including B’s annual neurology and orthopaedic appointments. Reasonably good news from both of these: her seizure rate may have slightly improved and her physical condition has not worsened, so no change to medications or her exercise regime. Steady as she goes.

There was a big meeting on Thursday, which I can’t really write about on here. But if the promises made are fulfilled, they could make a big difference to the future of my children and my ability to cope too. Everything crossed! But I was so exhausted after all the appointments that I didn’t have the energy to feel cheerful, at least not until Saturday evening. Then the conversion happened, and suddenly I’m seeing last week in a completely different light 💙

R2BC at Mummy from the Heart 

Lovin’ where I live #R2BC

I know I often talk about moving house, but on a mild spring day like today, I don’t want to move too far.

And I was planning all sorts of faraway trips over the weekend, but after the stress and angst of internet outage (fixed by an engineer remotely this morning) and the panic when my van broke (fixed by me at lunchtime*) I felt too tired to do more than take B for a short walk around the local area. It ended up as a long walk, and I decided to take some photos to show you why I still love where I live.

We began the afternoon’s adventures by sharing coffee and cheesecake at the Lovely Food Cafe. Well, she shared the cheesecake, I didn’t actually share the coffee!

Then we wandered down towards the Park, with B getting giddy from the sugar, and we admired the local cherry blossom tree.

We strolled past the National Botanic Gardens and enjoyed looking at the tulips, and a very pretty magnolia tree.

We passed by one of the local traditional pubs…

Hedigan's Pub

… And then we headed for home via the path along the Royal Canal: There were boys jumping into the deep water between the locks, as they have done for decades, and an old woman feeding the birds, but I didn’t think it right to photograph them…

It was a lovely afternoon that we both enjoyed, and a great reason to be cheerful for this week.

R2BC at Mummy from the Heart

*I will get it checked by a professional after the weekend, just to be sure.

Reasons to be Cheerful about Undiagnosed Children’s Day #UCDsuperhero

My daughter is undiagnosed. She is no longer a child in age, but I still feel a bond with all those families who are wondering why their child is different and desperately searching for answers. The current thinking among some disability communities is that you should just look at your own child and ignore labels, but that presupposes that every parent knows what to do when faced with a barrage of unexpected medical, physical, intellectual, behavioural, and sensory differences. Most parents struggle at times with their typical children, and few would criticise them for consulting parenting books and media experts for help. So it’s surely understandable that when you have a disabled child, you want answers, you want a diagnosis, you want a roadmap, you want tailored advice, and you want to find your parenting tribe. And today is Undiagnosed Children’s Day to raise awareness of the additional unique challenges of raising a child with no diagnosis.

I’m still searching for a diagnosis and I enrolled my daughter  in the DDD project a few years ago. No answers yet. But it’s not something that really worries me at this stage. I’ve learned that you cannot predict the future, no matter how much information you have, or how hard you try to control it. I’ve also learned that no manual or advice will ever be guaranteed to help your child, even when they do have a diagnosis. I know how hard it is, but it will be easier if you can find a way to let go of your expectations and go with the flow instead. My daughter is proof that life goes on and can be wonderful too.

While my daughter has severe to profound physical and intellectual difficulties, she is healthy and happy once her needs are met. She’s a joy to be around, and has found her place among a group of more able young adults in a day programme nearby. She has a busy life in the community at weekends.

Thanks to the much maligned Facebook, I have a big network of other parents living similar lives to myself, some with sons and daughters a little like mine. We face similar challenges and can support and advise each other. There is an organisation for families living with an undiagnosed child called SWAN UK (open to families in Ireland too) and it also provides help, resources, support and a community. So you could say that we’ve both found our tribe too.

21 years after that tiny 875 gram preemie baby took her first breath, she is very much alive and loving life and spreading happiness all round her, and despite the lack of a diagnosis, I am now confident that I can meet her needs, once she and I get enough support. So many of my worries about her have been melted away by her beautiful smiles. She really is a #UCDsuperhero and that’s my reason to be cheerful for this week.

Undiagnosed Children's Day 2018
More reasons to be cheerful over at Lakes Single Mum.

 

 

 

She’s Gone

And just like that, she’s gone. Twenty five years of parenting gone in a flash.

Bags hanging at every angle, squeezing awkwardly through the porch door, keep cup in hand, out into the grey early morning light.

Heading away to begin a new job.

There was planning, shopping, grumps, nerves, anticipation, a hug or two and a final goodbye.

She’s left behind a well-used Tassimo, a huge collection of plastic food containers, bags and bags of old clothes that she no longer wears but cannot bear to throw away just yet, and an empty room. I will have to get used to that.

My first born taught me to become a good enough parent, she taught me that parenting is fun and frustrating by turns, rewarding and exhausting, transforming and fulfilling. I made many mistakes, that she teases me about now, but said nothing about back then.

And of course I’m going to miss her, especially the chats we had every evening when she arrived home from work, bursting to tell me all about her day. But I’m not sad. This is the natural order of things. This is how it’s supposed to go. This is what all those years of parenting were for. She’s launched herself into the world. She’s chosen her big adventure. I know she’s going to pour every ounce of energy and determination into it. I know she will succeed in making her mark.

I love her and I’m proud of her, and also she’s back on Friday for the weekend ….

Megan as a toddler

 

 

Reasons to be cheerful 20.4.18

I almost stopped writing these posts: I’ve been doing them for about 9 years in different places, and I thought you might be bored with them at this stage. Especially as there is definitely repetition – after all, my life is not exactly exciting any more!  Yet every post still seems to get a good reaction, so here we go again for another week with some daily tidbits…

Friday: B may be grown up, but it’s important to get her out of the wheelchair every day. So floor time is still part of the daily routine. And on Friday I remembered to put her on her tummy, which helps with her head control: I haven’t done it in a long time, and luckily she enjoyed it.

Saturday: Chatting with other parents in the lovely garden of the Carmichael Centre in Dublin while our teenage sons and daughters attend a therapeutic drama session. Best of all, B was happy to join in.

Sunday: Doing the 10K Great Ireland Run in Dublin’s Phoenix Park with my pal Lisa (and clocking up 31,400 steps over the day). It was wet, cold, windy and wonderful!!! A 3 1/2 hour escape from all my worries and I look 10 years younger. Even in a bin liner 😂.

Me collage Candi 17.18
Left hand photo taken at Christmas when I hit rock bottom with stress and exhaustion

On a more serious note, it shows the value of respite, and how difficult life can be without it.

Monday: I discovered a new season of my current favourite TV series: Marvel’s Agents of S.H.I.E.L.D. Please don’t judge me, it’s a little bit of escapism for an hour after B is in bed – and I suspect I may view Coulson as a surrogate father figure 😂

Tuesday: Zumba 💙

Wednesday: The arrival of sunshine meant I got some work done in the garden.

Thursday: I rewarded myself – and the rest of the family – with cake following a painful physiotherapy session. I have to get my shoulder problem fixed as it’s preventing me from doing some of B’s essential daily stretching exercises.

Friday: A morning meeting that promised much. Now to see if it delivers!

Head over to Lakes Single Mum for more reasons to be cheerful.

 

Reasons to be cheerful 13.4.18

Shoving my Pollyanna hat firmly back in my head, here’s a few reasons to be cheerful…

…I fixed the TV screen. It was infused with a brilliant shade of pink. My disabled daughter thought it was pretty, but it rather spoilt some of the programmes I enjoy while I’m seeing to her needs.. (Hint: it was actually easy to fix 😂😂)

…When friends ask ” if there’s any way we can help”, and you know they really mean it.

…I had to go to the dentist to order a new mouthguard to stop me grinding my teeth away to rubble at night (carer stress) and not only did he clean them, but he managed to remove a little brown streak on an incisor that had been bothering me for years.

…I finally tackled my shoulder pain and went to a sports injury clinic where an hour of lying on a physio table and submitting to needles and deep massage felt like pampering. As I’ve said before, it’s amazing how your perspective on things can change!

…B and I went to nearby Farmleigh House recently, somewhere we’ve visited many many times before. It really is a magical place, so to make it more entertaining for me, I began picking out features that fitted classic children’s stories. So, ta da, I give you Rapunzel’s Tower, Treebeard (an Ent from The Lord of The Rings) and Professor Kirke’s house where Lucy found the Wardrobe that led to Narnia….

Check out more reasons to be cheerful over at Lakes Single Mum.