Finding a Place Where You Belong

I tentatively made an Instagram account in May 2014.

We had just suffered a huge loss, our first IVF miracle baby, miscarried early on.

I was lost.

I was in desperate need to connect with people who understood loss and also infertility and the gruelling IVF process.

I was amazed at the online community I found.

The support and love I received and the friendships I made.

I shared our second round of IVF via my account, the ups and downs and ultimately my twin pregnancy.

I have transitioned over the years between different communities, infertility and IVF, pregnancy, motherhood, twins and multiples and landing eventually in our ultimate destination the SEN community.

I have friends and contacts from all communities I have been a part of.

I continue to offer support and advice where I can to new visitors to each journey.

Finding not one person, but a community of people that are going through similar if not identical journeys are your own is incredible.

The solidarity and understanding is second to none.

I have made firm lifelong friendships with the most wonderful people.

Reaching out can be scary but being alone in your journey is far scarier.

Amazing things an happen when you find your tribe.


What My Young Carer Daughter Teaches Me

We have two children; James, 16, Autistic, with Learning Difficulties and Epilepsy, I’ve written a lot about all that we learn about life through him; and Phoebe, 19, neurotypical and a young carer, this blog is all about what we learn from her.

The arrival of a second child into a family is almost always disruptive.

The first child has probably had a lot of things their own way in their life up to that point and suddenly there is competition for attention, praise and rewards.

Phoebe was 2½ when James was born, and it’s fair to say that she had been the centre of our universe during that time!

Recognising the challenges that she now faced, that any oldest child faces on the arrival of a sibling, lots of people remembered to make a fuss of Phoebe, to give her cards and presents, helping her not to feel overlooked or left out.

One of the cards that Phoebe received had some foam flowers on the front; she loved it and wanted to take it to her room with her when it was bedtime.

Several hours later she wandered into the lounge to declare “Daddy, I have a flower up my nose…”

Some investigation established that one of the foam flowers was now firmly stuck deep in her nostril, resulting in a nocturnal Saturday night trip to A&E, which was now filled with drunks that had got into fights, footballers who had tried to ‘run off’ their foot/ankle/knee injury and now realized it hadn’t worked, and a 2½ year old little girl with a flower up her nose!

After that unfortunate start, life for Phoebe got back into a regular pattern.

She became very attached to her young brother and enjoyed having him around.  When Phoebe was 5, James was diagnosed as Autistic and with Learning Difficulties; a difficult time for us as a family and one that we tried to protect Phoebe from as she had enough to deal with having recently started school.


As both Phoebe and James grew up, however, it became more and more obvious to Phoebe that James was not like the brothers or sisters of her friends.

James didn’t talk, he didn’t respond to his name, he didn’t really play with Phoebe.

It would have been easy for Phoebe to have just become more distant from her brother, to ignore him, but instead she asked us questions, lots of questions…

“Why doesn’t James talk?”, “Why won’t he play with me?”, “He’s different to my friends’ brothers, why?”


As parents trying to come to terms with James’ diagnosis ourselves, it was hard to answer Phoebe’s questions, but we noticed that Phoebe wasn’t just asking from a place of being upset for herself about the differences she was noticing, it was out of concern for James.

Her love for James wasn’t dimmed by his differences, if anything it grew as her understanding of him grew.

She realized that James’ differences were hard for him too.


We noticed Phoebe becoming a caring, empathic girl, someone who always noticed when somebody else was upset, wanting to know what was wrong and looking for ways to help.

She became a staunch advocate for other children with additional needs too, standing up for them if others were mocking their disabilities, taking it personally if someone said unkind things about other disabled children, campaigning for equality for all.


Phoebe’s questions continued, became deeper.

She wanted to know more about Autism, about what it means to be Autistic.

She has an enquiring, inquisitive and searching mind, never resting until she has the answer to her questions, never settling for second best.


She continues to care for James as well, looking out for his needs, learning a little sign language to help communicate with him better, sitting next to him at the dinner table and being the first to make sure he is using his cutlery, not his fingers, to eat, and making sure he asks for more, doesn’t just help himself from someone else’s plate!

Phoebe has always been happy to childmind James from the time when she was old enough, and even before then would tell us that she would tell the childminder what to do!


The older James got, especially as puberty hit with all of the hormonal changes that brought, and then with the arrival of Epilepsy in 2017, there were many disruptive times.

Days when family plans suddenly changed, holidays that had to be cancelled, an increased focus on meeting James’ changing needs.

Phoebe has been magnificent throughout, always understanding, being selfless, still helping us to care for James.


Phoebe has learned not to settle for second best, but to strive for more.

She has shown this in the ways she has coped with setbacks in her own life, always emerging stronger and more determined.

She has shown this in her support for James too, always pushing him to do more for himself, and rightly calling us out when we do things for him that he is capable of doing.

For Christmas, Phoebe gave me a whisky glass with an inscription on it, a quote from one of my favourite historical figures, Winston Churchill, “My tastes are simple, I am easily satisfied with the best.”

Phoebe always strives for the best, for herself, for James, for our family; her gift to me is an excellent reminder of this.


She might have chosen another of Churchill’s quotes, a quote which summarises how she has taught us so much, how her character has been formed in so many positive ways by her life with James and how this has rubbed off on the rest of us too.

How we’ve become more resilient as a family, supported by our wider family and many friends, as well as our faith…

Never give in. Never, never, never, never – in nothing, great or small, large or petty – never give in, except to convictions of honour and good sense.” Winston Churchill

Phoebe continues to inspire us…

She is in the process of setting up a small business to provide fiddle/fidget boxes to churches and schools to enable them to support children and young people with additional needs better… and she delights us every day in the ways that she has responded so positively to the ‘different’ life she has had so far as the sister of a boy with additional needs.

She’s come a long way from that little girl with a flower up her nose, and we are immensely proud of her!

Birthday Traditions

Once Christmas and the new year is over with each year our family get ready to celebrate Ryan’s birthday. On the 12th of January Ryan turned 4.

Having a child who has a birthday so close to Christmas can be stressful as there are only so many gift ideas we can think of.

For us, it becomes even more difficult because in Ryan’s case he does not provide us with a long list of presents that he would like.

If I am 100 per cent honest I do sometimes struggle for gift ideas for Ryan.

He cannot play independently using his hands so a lot of toys on today’s market would be a waste of time for him.

I tend to research and keep an eye out for other toy ideas that he will benefit from. Our go-to toy ideas most years are things that light up makes a lot of noise and have the ability to move.

These toys are normally for a younger age range than Ryan but if these toys make Ryan smile then that reason alone is good enough for us.

This years birthday present was a massive hit and I would even go as far to say its been his best present yet.

We bought him a waltzer car. This is a ride on toy it spins around, lights up and plays music.

We attached his Firefly GoToSeat to the waltzer and it turned from a regular ride on toy to a supportive Ryan friendly ride on toy.

Each year we just have a small get together at home for Ryan and invite all our close family and friends.

I love to pick a theme to base his party around.

This year was a Finding Dory/Nemo theme as it is currently his favourite Disney film.

I bought blue and white crepe paper and made an under-the-sea inspired wall in our kitchen.

I hung cardboard fish between the twisted crepe stripes and set up a table in front of the wall. I place a lightbox on the table that read ‘JUST KEEP SWIMMING’ and added an inflatable Nemo at the other side.

I also always order him balloons to match the theme of his party, I love how happy he is about still being able to look at the colourful balloons for days after his birthday is over.

It feels like its a continued celebration.

Another tradition for Ryans birthday is I always make his birthday cake myself. Before I had Ryan I studied cake decorating at college and went onto work as a pastry chef at a restaurant.

I fell away from my cake decorating when Ryan was first born but I made it our tradition that I would make 1 cake per year and that would be for Ryan’s birthday.

I love to try and outdo the cakes by making it better than the previous year. His Finding Dory cake was one of my favourite cakes to date.

It was an under the sea themed cake with a fishbowl filled with water on top and in the fishbowl was a battery operated swimming Dory.

I love to take as many photographs as I can it is important for me to capture the moments.

As a special needs mum, I try and make Ryans birthday better than he would ever hope for or imagine.

I want to make every single birthday special. Treat every birthday like its the last.

This is the main reason why we do what we do. Every single year is a blessing and another achievement.

Being Severe Doesn’t Mean Never

For the last 5 years we haven’t stopped. We haven’t even paused.

Our son has a rare genetic condition, congenital disorder of glycosylation, that affects him in every single way.

He is, unfortunately, on the severe end of the spectrum of the disorder.

He is severely developmentally delayed; his baby brother passed him up with his motor skills when he was just 5 months old.

Our son is also nonverbal but can use a communication device to make requests.

Right now he can respond to a question with a yes or no, or make a request for simple things.

It’s not much, but it’s something.

He is tube fed and takes nothing orally. And believe me, we’ve tried and continue to try.

I am part of a social media group for our son’s condition, which I absolutely adore.

I love sharing triumphs with other families and I appreciate the amount of knowledge that is in the group.

Watching other children achieve major milestones is wonderful to see, and inspiring.

But I have to be honest, it can also be heartbreaking.

I remember back to the beginning when our son was an infant and I would see children with his same disorder crawling up the stairs at age 4, and I would think to myself ​that’s not so bad, we can handle that.

I would see photos of children at age 3 eating a bowl of cereal and I would mentally count the number of feeding therapy visits it would take to reach that age.

I would watch videos of children saying “mom” or “I love you” with tears streaming down my face and just imagine the joy that parent was feeling, biding my time until it came for us.

Well, here we are. Almost 6 years old and none of that has happened for us.

We have accepted the fact that our son is on the more affected side of the spectrum.

We recently had a developmental assessment and the specialist looked at us and kindly said “the report won’t be pretty.”

I think she was trying to warn us for when the time came and we read her report. We know.

We know that he’s severely delayed.

It stares us right in our faces every day with his baby brother soaring past him.

We have reworded our goals from “we’d like him to crawl” to “we’d like progress.”

Simple. Just progress.

Our son has been in physical and occupational therapy for over 5 years, and we work with him constantly at home. But sometimes being on the severe end means all of that doesn’t matter.

Sometimes it means that no matter how many hours of physical therapy we do he still may not be able to achieve the milestones we are striving for.

Even though reading those words aloud chokes me up I know it’s ok. But I would be lying if I said it didn’t sting a little when I see other children with his same subtype on the other end.

Please don’t get me wrong, I’m elated and proud of what other children are achieving but it still makes my heart ache a little.

We’ve also watched families lose their children to this disorder, and it’s such a helpless, heartbreaking place to be in.

It’s a crazy teeter totter because in those moments I want to just hold him and hug him because he’s here.

And it makes me feel horrible for even caring if he walks or talks because after all, ​he’s here

And in the end, severely affected or not, doesn’t really matter.

It’s not always easy to be on this end. It’s lonely. It’s not always fun to watch other children with the same disorder who are much younger pass our son up.

It’s quite sad to play the game of “when did your child sit, crawl, walk…?” when our answers are still pending. It’s heartbreaking to feel like you’ve worked harder and longer, only to fall short.

We haven’t stopped in the last 5 years.

We haven’t even paused.

Because being severe doesn’t mean never.

The Internet is a Funny Place

The internet is a funny place. It brings all sorts of debates and opinions and causes a good few arguments.

This week there has been a few articles which I read.

I read the comments and then I had to walk away from the computer.

It still amazes me how worked up people get over baby changing facilities and parent and toddler parking spaces.

Yes, I am a mother, yes I have had a baby and a toddler at the same time and yes I am a mother to a child with an intellectual disability as well as a physical one and finally, YES, I am sick of having to highlight what my world is like but here I go, again…

I am amazed at all the comments demanding that those without young children be fined for using the car spaces and that the disabled bathrooms should be move inclusive to babies.

I think when you’re in the trenches of early motherhood these things seem and feel like huge injustices but really, they are not.

In what will be a blink of an eye there will be no more bums to change and everyone will be able to buckle themselves in.

That’s the bottom line, babies don’t stay babies forever…well, generally speaking, they don’t.

Baby changing facilities are in my experience, always in the disabled bathroom, which makes littles sense.

Being or having a baby isn’t a disability; it’s hard, yes- but it is not a disability.

What would make more sense to me and I am sure to a lot of parents currently having to change their babies bum in public is to let them do it on the floor of a public toilet…

Ahh, Now that caught your attention!

Yet, I am expected to change my disabled son on a public toilet floor but those with babies are expected to change their babies in the disabled toilet on a bench suited to their tiny baby’s needs?

And let me be honest, it’s at a nice height which won’t have mammy or daddy hunching over said baby.

Does that actually make any sense – mammy or daddy use a separate toilet then queue to use a disabled toilet so they can change their baby?

Yet, those like my son, with a physical disability, queue to use the disabled bathroom so they can be changed on the floor?

While their mammy or daddy’s back breaks for the millionth time that day.

No one should have to be changed on any floor anywhere.

Why not have a changing facility for babies in the same toilets that their parents use?

Place a small bench in both male and female toilets so babies can be changed- put it in a cubicle with a little extra space for buggy and there you have it-a changing area in every public male/female/unisex toilet.

Isn’t it time those with physical disabilities have access to proper equipped public toilets?

Where is the outcry from the public over this?

I can never understand why the public don’t seem to care.

None of us are immune to disability nor are we immune to a physical disability.

And now to the parking spaces- one comment on that thread was that those with the blue parking badge should not avail of these spaces if they don’t have a child.

This comment made my blood boil.

I agree with parking spaces for young kids, it’s damn hard when they are young but again it’s not forever.

Should someone be fined for pulling into one without a child?

Well, if Joe public can use a disabled spot because he only needs a loaf of bread and he doesn’t get fined, then why in the world would the same Joe public demand a person using a space for young families get fined for parking while not having a child?

It makes no sense to me!

Disabled spaces are abused every single day of the week.

Disabled toilets are unsuitable, unfit for purpose and are basically glorified baby changing areas.

Isn’t it time these things change?

Isn’t it time that a baby can be changed by either parent in a public bathroom without going anywhere near a disabled bathroom?

Isn’t it time a disabled parking space is used solely by those with blue badges and that those family spaces are used by those who need them not those who need the convenience of them?

Couldn’t family spaces be further away from the door to the shop?

It’s about the bigger, wider space rather than the distance after all.

There are solutions to all these debates; one voice-one public voice demanding baby changing facilities to get out of the disabled toilets and parking spaces to be respected.

Hopefully one day soon, I won’t have to lay my son on a public toilet floor to change him…and I will be able to use the disabled parking space because Joe public decided to park in a space not quite as ‘handy’ for him.

For more information on Changing Spaces please click here

Out-of-Control and Overwhelmed

I wanted to write a post about mindfulness and special needs parenting.

I have so many thoughts and opinions about it, but have struggled to filter it all into something that is both interesting, and coherent. So instead I wanted to write about control… and how we manage those feelings of being out of control.

I tried to research the issue of mindfulness and all I yielded in relation to SN parents and mindfulness was an existing Firefly blog – everything else was geared towards teaching SN child mindfulness, not their parents.

There is little to suggest mindfulness even works if you’re in a situation that exposes you to chronic stress almost daily.

All you can control is how you react to those stressors and if you can put a buffer between the stimilus and your reaction.

My biggest anxiety feature is that I often feel like I have no control over my own life. I have observed in many other families like ours that this is often the case for them too.

It manifests itself in so many different ways for me, depending on the situation and my level of sleep deprivation.

For example, recently our household has been more sleep deprived than usual.

The return to the school routine, the exposure to more cold viruses, changes to meds, and various other things has meant many sleepless nights for us.

Amy’s sleep routine is currently to awake for the day at around 2-3am and expect full attention.

It isn’t possible, I simply cannot do it.

If I do allow it then we will get stuck in that cycle and it isn’t good for any of us.

If she does sleep – then she is making unusual noises and we are waking with a startle to make sure that she is breathing okay and not having a seizure.

When I’m tired (which is all of the time in varying degrees) I can be entirely non-reactive… any challenges that are thrown my way are met with absolute dismissal.

I resign myself to a zombie like state and work on auto pilot, completing tasks with minimal emotion.

My child can be mid meltdown, swinging and thrusting her legs to kick me in the face as I try to change her nappy… and I will silently move her back to a safe position over and over until the task is done.

In spite of my exhaustion I persevere – I have no other choice.

When I eventually become more lucid, I reflect on this time and feel guilty that I wasn’t “there” for her and interacting properly.

Or; I am over reactive.

A challenge will present itself such as “you need to take your child to hospital to be checked over” and there will be an outpouring of self righteous and emotional ramblings.

I will get hot, I will cry, I will judge blindly, I will complain… I will act a bit like a toddler who is not yet able to regulate their emotions.

It comes over me like an unstoppable force, like I am possessed by the feelings that encompass me.

My free time, which is very rare – has suddenly been taken away from me.

I have to cancel plans, rearrange my personal appointments, and unexpectedly spend many hours in hospital.

Mindfulness speaks so much about living in the moment. But sometimes those moments are intensely stressful.

When your child is enduring a prolonged seizure – those are the longest moments of your life. This is a moment you truly do not wish to feel and be in awe of.

I try when possible to enjoy “the moment” when things are calm and going okay.

I have learned a new appreciation for “normality” and the mundane. My favourite answer to what have you been up to is “not much.”

I don’t seek drama, or interest… if we all make it through to bed time safe, and at home, then that’s a huge win for everyone.

Every attempt at making plans over the last few months has been entirely futile.

Each time we miss something like a family Christmas dinner (thanks epilepsy), the last week of school (thank you influenza B) or a social gathering (thanks unexplained neurological irritability) it makes me want to just not even try.

It makes me feel like sitting in our house, TV on, hospital bag packed just in case, and avoid the disappointment.

If we don’t commit to something… life can’t deny it to us.

I feel out of control in that any dietary or medical decision I wish to make for my child has to be authorised by someone who isn’t myself.

Whilst I understand this, I don’t enjoy calling our GP to switch back to our old formula as our current trial isn’t working to then be told they need the dietician to request that.. not me.

I don’t like going on a day out and my child screaming incessantly until we are forced to leave… again.

I feel out of control when the seizure won’t stop and her breathing gets bad.. and before I know it I am bundled to the back of the room watching people help my daughter fight for her life.

I feel out of control when I make nice plans and get the call “we are waiting for an ambulance.”

It can make you feel like you are on call. It makes you dread every phone call. It makes your heart beat faster and harder than it should, waiting for that call.

It makes you watch her every movement when she’s with you, hoping desperately that things stay OK.

It makes you scared to commit to plans, it can make you seem a bad friend.

I feel out of control when I want an adaptation or piece of equipment but am told no.

Any small setback can be the icing on the cake and send me into a panic attack on a bad day.

I can appear like a control freak in my desperation to cling to those little things I do have jurisdiction over.

I can be fussy about timings, locations, and other aspects of a trip. It can make me seem awkward or bossy, but actually it’s a comfort to me and I need this.

So what does everyone else do to feel more in control?

For me here’s a few examples:

Pre drawing the next days meds.

This makes me feel that whatever the day throws at us… at least we have some level of prepararion.

Not all of the meds can be pre drawn, but it’s good to get as much done as possible. Meds aren’t a job you can miss when you’re tired like washing or doing the dishes.

So if life is forcing meds into your life… control how you go about doing them.

Trying to respond wisely instead of blindly to stressors without transforming into a lifeless unreactive blob.

Easier said than done. But I hide my wailing crying stressy anxiety from Amy quite well. How can I expect her to be well adjusted and not emotionally reactive if she’s exposed to it constantly?

A dropped yogurt on the floor? No problem. Breathe in deep, no need to cry, clean it up and move on.

Re-organising cupboards/drawers.

I don’t always get time to do this, and I am often too tired. This is a job that only gets done when things are going relatively well.

It feels great to get rid of some clutter to charity, or ebay and to have more space.

There is a huge lack of space in our equipment filled home, so any efforts at tidyness are a visible reflection of how in control I can be.

There are a lot of things I wouldn’t choose to have in our house, but have to… like for example many boxes of tube feeding equipment. So it’s nice to have some choices!

Controlling the audio around me.

Anyone who knows Amy will know how dependent on music she is. Specifically nursery rhymes.

Most aspects of our day feature an audio of either her iPad, or me singing. Sometimes at night when the house is silent I have ringing and beeping in my ears… the silence can be deafening.

So when she is at school I make an effort to have my favourite music on at just the right volume.

I don’t handle loud shops or cafes very well and am known to entirely dissociate from conversation when it gets too much.

So being able to control my environment when I can is a huge deal as so often my life is uncontrollably loud.

Making the bed everyday.

It’s only a small thing. But anyone with depression will tell you that actually this is a huge achievement.

For some people, if that’s the only thing they do that day, it’s a massive accomplishment.

When I make my bed everyday, I feel some level of organisation in what otherwise is an extremely chaotic and unpredictable life.

I don’t have the choice for it to be the “only thing” I do that day.. not many people do… but it’s at night to retreat to a nicely made bed.

Getting outdoors.

It doesn’t “fix” your mental health issues, but it can help put some fresh air in your lungs and force you into a different perspective, even just for a short while.

You can choose which path to take, you are in charge of this journey, even if every other journey is laid out for you.

Reflecting on positives.

This is an obvious one. But sometimes amidst the clouds of your gloomy disposition – you can lose sight of how far you and your little family have come.

I sometimes sit and go through photos on my phone and smile to myself at those nice happy moments.


I have recently got back in to reading in a big way. I find I am either not into something at all, or utterly obsessed.

Reading is escapism, and I can choose where to go for that escape.

Having hobbies is hard.. it can be demanding on time, it can be expensive, or you can simply be too depressed or fatigued.

But reading is there when you want it, and when you don’t. Reading doesn’t mind.

I could go on and on… but these things are all very personal to the individual.

We all have our own coping mechanisms. I would be interested to hear about other people’s experiences.

There is so little we have control over sometimes, and it can be debilitating… but finding a healthy coping mechanism really is key.

New Year – New Battle

I have been wondering recently if it’s just me or if most parents feel that with New Year comes some New Battles.

Or New Year same old battles?

In my world, everything is a battle.

And it’s funny because when I talk to friends or they come and visit and see some of Ethans new equipment, they reply with “Well, that’s brilliant, that didn’t take too long to get either, did it?” And they mean well.

They really mean well but nobody wants to be that negative ‘friend’; God knows it is hard enough to keep any friends once you step into my world, so I normally respond with a nod and a smile.

Inside my head I am screaming that it took me a friggin year and a half, a dress size (up or down) and it’s still not suitable but it’s all they could source.

I used to tell those involved with Ethans care that things will go downhill once Ethan reached a certain age.

I told them this as a way to prepare myself and to try to get in place equipment Ethan would need before he actually needed it, if that makes sense?

This thinking and talking only benefited me. It did indeed prepare me for the decline that was always going to come with Ethan but that is all it did.

Nobody involved in Ethan’s local care ever really understood that this little whirlwind in front of them, who was screaming a song from the top of his lungs would one day lose the ability to understand, speak, walk, eat …

We are here in that ‘one day’ now.

Despite all my talking and my belief that it did help me, I still struggle with the little boy in front of me compared to the little boy of years gone by.

But, I ain’t got time to feel all that in my day to day as I am sure plenty of parents like me understand.

I have to battle.

I have to battle my innermost heartbreak just to get up.

I have to battle sleep deprivation daily.

I have to battle the stress of everything that goes on in my mind and heart daily.

I have to battle anxiety just enough to be able to smile.

I have to battle with all the services, the city council,schools, often doctors offices and so much more on an almost daily basis- not all for Ethan either as I have two other sons.

..And I am not the only one who battles daily like this.

There are thousands of families who have to battle to get their kids a school place,the right education, their basic needs to be met.

Don’t even start me on Ireland’s idea of disabled toilets, that in itself is a battle the whole of Ireland should be concerning themselves with.

Battle is a funny word because it implies someone will win.

These battles we fight- no one actually wins.

No one walks away feeling like a winner; most parents feel horrible having to battle for help and supports that their child needs in order to live, in order for them to enjoy the simplest of things in life like a safe bed to sleep in.

Just before Christmas we were finally given the green light for a sleep safe bed for Ethan.

I didn’t feel like a winner.

I felt sad.

It was and is a stark reminder of how far Hunter Syndrome has progressed within my sons body and mind.

I felt that battle was pointless as Ethan needs a safe bed, I felt it was time and energy I didn’t have to spare wasted on something every single person in this world needs – a safe place to sleep.

This New Year for me means more battles. Some old battles and some new ones.

We physically don’t have the bed yet but I am expecting it any day now…

A battle I have been battling for almost two years is an extension for Ethan.

And I will be totally honest, I started the process a whole year before Ethan really, really needed it, I did not want an emergency situation on my hands but…alas…here I am.

Ethans ability to walk has decreased so much so that I have no choice but to carry him downstairs.

We toyed with the idea of a stair lift but Ethan doesn’t like swings or anything that moves as suspiciously as a stair lift might.

He’s unsteady as it is,so the thoughts of strapping him into a stair lift not only sets us up for another unsafe situation but one that is likely to scare the crap out of a little boy who has already gone through too much.

My husband carries Ethan to bed each night and each morning I carry Ethan down the stairs.

This is an accident waiting to happen but no matter how often I ring, or how many letters of support I produce our extension is still not coming any time soon.

It is a battle I am not willing to walk away from because Ethan needs to be safe in his home.

I should not be putting Ethan and I in danger in order to get out of his bed and down the stairs. Ethans current bed is two mattresses plus a makeshift safety bar along the side to keep him from falling out.

It does mean that we’ve to be over him and try to get him up in our arms in one swift move, a move I have not mastered at all.

Ethan should be able to have a shower in his own home too but that too is a battle as his bathroom is too small for the equipment he now needs and the amount of people it takes to shower him safely.

Respite thankfully have a suitable shower so Ethan does still enjoy a shower there.

So, I will battle on.

I will be told over and over about budget and waiting lists; and I will repeat myself over and over about how time is something we don’t have the luxury of.

I will be told too that Ethan will get his extension when they can cross the T’s and dot the I’s .

I’ve been told this since this Summer; it sure takes a long time to dot some I’s and cross some T’s.

So, I will battle on.

It is always a battle.

And when they knock the wall and finally begin, I won’t feel like a winner. I will feel sad that my 16 year old son requires all this extra space and equipment.

And there will always be a certain sadness that we are even in a situation where we couldn’t provide our son with all the care and needs he requires without help from our services, government and city council.

But, like everyone else in our circumstances we will battle on this New Year and every new day that we are presented with.

What about you, what are you battling this New year?