To my fellow additional needs families,

We go through the everyday supporting each other; laughing together, crying together, ranting together, offering advice and sometimes just being a listening ear.

Our days are filled with lifting, changing, feeding, physiotherapy, breathing treatments, medicines, therapists, hospitals, appointments.

We spend our days researching, advocating, driving to appointments, attending meetings. We spend our days caring and doing everything we can to ensure our families are happy.

Some days we get tired, some days our backs are breaking. Some days things don’t go to plan and some days we don’t accomplish much.

Some days we cry and some days we wish it was different. Some days we have fallouts and some days we feel lonely. Some days are filled with worry and stress. Some days are tough physically and mentally.

On those days my fellow families, we pick each other up, we send a message of support, we phone with advice, we make each other smile.

We let each other know that we’ve all been there and were all in it together.

Some days we see miracles, milestones never thought possible. Some days we laugh and accomplish much. Some days we celebrate achievements – small ones and big ones.

Some days we feel loved and surrounded by family and friends. Some days feel easy and we make it to bed time with zero drama. Some days we do fun things and we get a break from hospitals and appointments.

On those days my fellow families, we celebrate together, we smile and are happy for each other, we message with support. We’re all in it together.

So this Christmas I want to thank you all for your support this year; for the laughs, the tears, the tantrums, the advice and the love.

You are all incredible families – strong, brave, accepting, loving, kind.

I feel privileged to have met such a lovely families and love doing life with you all. I want to wish you all a merry Christmas and for the New Year I wish you all hope, strength, love and a year ahead full of making memories.

Here’s to continually smashing life together.

Love me x

Our daughter Isla was born with a rare chromosome disorder causing autism and epilepsy.

Unlike most neurotypical children she cannot entertain herself for long.

She can watch TV or any other screen all day if you’d let her but cannot self direct very well and often needs someone alongside.

Left to her own devices this often includes dismantling, unscrewing or breaking something. She goes through stages of playing with her toys or reading books but the lure of TV becomes too overpowering.

We banned her IPAD nearly a year ago as she was well and truly addicted.

We have 8 weeks off school here in New Zealand. It seems quite daunting thinking of ways we can keep her entertained and screen free during this time.

Fortunately we are going away for a beach holiday for 10 days.

This is the perfect time it seems to commit to a strict schedule that will help us all stay on task.

I am hoping when Isla knows what is expected and planned each day this will help motivate her to get out of the house and to take part.

This may include a walk in the morning with her service dog Bo. A trip to the beach before it gets too hot or a day trip to explore on a rainy day.

A set time for morning tea, lunch and afternoon tea. Down time scheduled and timed with a book or TV. Another walk or scooter ride early evening and a family board game.

Santa this year is bringing everything to help us achieve this. New sand toys for the beach and plenty of books.

This will require a little more work and organisation on our part.

It will also mean not as much lazing around but I think a little less screen time will actually do us all the world of good.

It will be great to live in the moment, make the most of our summer holiday while teaching Isla how to schedule her time.

We will have to parent even when we don’t feel like parenting but I am sure will be so rewarding.

It seems so easy writing this down. How hard can it be??!!!!

Wish us luck!!!!

Every year we hear the Christmas story, of Mary and Joseph heading to Bethlehem, of the innkeeper, angels and shepherds, the wise men, and of course the baby Jesus; but have you ever looked at this story as a metaphor for additional needs families?

Here’s a different look at this well-known story and how much of what happens can have a parallel in the story of parents of children with additional needs or disabilities

Unexpected news

Mary is visited by the angel Gabriel, to tell her that she is to have a very special child.

This came as surprising news to Mary, and she was ‘greatly troubled at his words’, before accepting what the angel had to say “May it be to me as you have said.”
Luke 1:26-38

For the families of children with additional needs, unexpected news can arrive during a pre-natal scan or examination.

This news can be greatly troubling, devastating even, and not every family is able to be as accepting of their news as Mary was of hers. For some, the news may be that their child will not survive, or will be significantly disabled.

It can be a very hard time indeed for families, who grieve all that their child might have been but now probably won’t.

A different location

Mary and Joseph needed to travel to Bethlehem because the census was being taken and Joseph, belonging to the house and line of David, had to register with Mary at the town of David, which is Bethlehem.
Luke 2:1-5

If there are concerns about a baby pre-birth, the range of options for the place where the baby will be delivered will be limited.

A home birth might be out of the question, with the specialist provision of a hospital maternity department being the only choice.

This might require a journey to somewhere unfamiliar, maybe in another town; thankfully it is unlikely to involve a ride on a donkey, but it may still be a difficult journey.

Unexpected kindness

Mary and Joseph reach Bethlehem but there is nowhere for them to stay. Mary needs somewhere safe to give birth to her baby and, although there are no rooms available for them to stay in the inn, the innkeeper allows them to use the stable, with the newborn baby being placed in the animals’ manger.
Luke 2:6-7

Families of children born with additional needs or a disability often talk about how, in all of the overwhelming medical crisis that is happening to them and their child, there is one person, maybe a midwife, a nurse or a doctor, maybe a hospital volunteer who brings a cup of tea and a kind word, whose simple act of kindness transforms a hard situation into one which, while still profoundly challenging, is just a little more bearable.

Strangers

Mary had just given birth when a bunch of shepherds turned up, having just been told about the birth of Jesus by a host of angels.

Goodness knows what Mary thought about this, she must have been exhausted and yet here were all these strangers turning up to see her baby. Luke’s Gospel says that ‘Mary treasured up all these things and pondered them in her heart.’
Luke 2:8-20

A little later, Mary, Joseph and Jesus had more strange visitors, this time wise men or Magi from the east. They brought gifts and wanted to see the baby.
Matthew 2:1-12

Families of a baby born with additional needs or a disability will get used to strangers too, with an often impressive list of medical and social care professionals involved in the care and support of the child and their family.

Parents might ponder all of this too… wondering what the future holds for their child.

Hateful people

Mary and Joseph were warned that Jesus was in danger from King Herod, and they fled to Egypt. Herod ordered the death of all boys under two years old across Bethlehem and the surrounding area, but he was too late to catch Jesus and his family.
Matthew 2:13-18

There are people in the world today who do not understand or accept children with additional needs or disabilities and can be terribly cruel to them and their families.

Hateful things can be said and done, and some even have the opinion that babies with additional needs or disabilities should be euthanised or ‘put to sleep’. Families will encounter these views on their journey, and it is incredibly hurtful and hard to do so.

Home

After their time in Egypt, Mary, Joseph and Jesus were able to come back to Israel again, to set up home in the town of Nazareth near Galilee. That became the place Jesus knew as his earthly home during most of his 33 years of life.
Matthew 2:19-23

For families of children born with additional needs or disabilities, it might be a long time before they are able to bring their child home; some, of course, sadly never make it.

For those that do, the journey might have been a long and difficult one, and perhaps will continue to be, but eventually they are able to come home and the family are able to start to plan for their future together.

A different future to the one they had originally envisaged and expected, but a future that can still be wonderful.

So, the Christmas story does have some parallels to the story of many families of children born with additional needs or disabilities.

Perhaps looking at it in this way helps us to understand both stories better, and to appreciate more fully the experiences, challenges and struggles of families that we know today.

Happy Christmas!

 

Sure if you ask my kiddos what they want for Christmas, you would get an array of answers ranging from a new phone, to a talking robot, to even an alligator!

The list has no end, and is constantly changing.

But as every mom knows, ten minutes into playing with some of those toys, you would never see them pick it up again for the rest of the year. (Of course, only when you are trying to get rid of it and they see.)

Most do not, but has anyone ever thought to ask the parents what they want or better yet, need?

Don’t get me wrong, I am not a cold hearted mom, I would throw in a toy or two off their list; but this mom definitely knows that they would use because it is a necessity.

For instance, my son Oliver whom was born with Spina Bifida, spends most of his traveling around the house on all fours crawling.

He prefers it, he is quick at it, and it requires less space than his wheelchair. Because of this, we go through pants like crazy!! PANTS, PANTS, PANTS…. That would for sure be on my list for Oliver.

Heck, even some good sturdy knee pads would help him extend the life of some jeans.

If we were going to get on the toy subject for a child with special needs like my own Oliver, I would suggest something that could easily be transported.

I say this because speaking from experience, I am always in and out of school and places like the hospital and therapy with Oliver and don’t particularly care for lugging tons of things around; buuuut at the same time I do want to have something for him to do while waiting around.

Some good ideas for this would be things as simple as bubbles and Play-Do. I tell ya, Oliver could spend hours playing with those two things and they are small enough to fit in a bag.

They also benefit as great hands on toys, good for occupational exercises.

Not only does it let their imagination get to work, but there is no limit as to what they can create or do. (Well, until you run out of bubbles or the Play-Do dries out.)

But these are definitely cheap to replace and can be switched up with colors and wands!

In this day and age when there is a new toy coming out every single day and electronics constantly powered on, it can be beneficial to speak directly to the parents to see what they know their child could truly use and benefit from.

Do I wish things were different?

Every now and then I see a little discussion on various groups I’m in. “If you could, would you take away your child’s disability/diagnosis?”

Every time I read it I am amazed at the variety of responses this question gets.

I don’t think there is a right or wrong answer. I don’t think any two answers are ever exactly the same.

I for one can’t even answer the question with any clarity.

I often wonder what Amy would say if she could tell me. I am not sure she knows she has cerebral palsy or is in any way “different”. To Amy… Amy is Amy. I think. And that’s how I try to see it.

I am a mixed bag. On one hand I am very pro disability, pro inclusion, very “we can do this” and we plough on as one amazing team.

But on the other hand is the side of me that says “oh wow, this is difficult, and it isn’t getting any easier.” The side of me that sees the horrible things my child has to go through in order to live a normal life.

Some days I hate Cerebral Palsy so much. The mornings where I can’t bend her legs to dress her, and she winces in pain as I try to gently help her.

The days where she needs a whole outfit change and she has to sit in discomfort until we can get her changed somewhere suitable. The days where she gets poorly and it manifests itself so much worse than it would for her able bodied peers. The days where I want to attend an event only to find there is no wheelchair access.

Other days; I feel intensely proud. The days where things go our way, the world doesn’t seem all that bad because what we need is there and we can be a happy family like everyone else.

The days where the seizures aren’t too bad, the days where there are no respiratory issues. The days where medical intervention is minimal and it’s smiles all around.

Sometimes I wish it would all go away. This week I have had a lot of time to be angry at life and how unfair it can be. Amy has been poorly now for two weeks. Prior to that she was also poorly for two weeks.

In Winter it can feel unrelenting. Just as she recovers from one illness another one strikes.

Sometimes I think I’m doctor mum. I have this inflated sense of self where I feel that I know my child best and I can 100% manage this from home.

We had almost a week of constant fevers, seizures, need for suction and so on. My poor girl lay there like a wounded bird. She would sleep day and night, not wanting to interact with us even one bit.

After 6 days we had to admit defeat, she clearly wasn’t getting any better. We hadn’t been able to feed her anything other than dioralyte all of this time.

When we got to the hospital one of the first words mentioned was “cannula”.

Immediately I started to hate Cerebral Palsy again. Inserting a cannula is getting harder and harder as she gets older – her veins have been used so much.

I am a bit squeamish about vein themed things and I was having to keep suppressing my dizziness and panic. It reminds me of when Amy was in NICU and I still had my cannula in from when I had my emergency c-section.

Once the pain relief started to fade away, I felt the pain in my hand and started to panic. I ended up hyperventilating through panic of this cannula. I know how irrational this sounds, but hey that’s me. So every time she needs a cannula I have this intense sadness.

Over the course of 3 days she had 4 different cannulas. She is notorious for knocking them out no matter how well bandaged they are.

She tested positive for flu (even though she had the vaccination!) and also c-diff. Even on IV fluids we’re changing the bed and her clothes constantly.

They started her on antibiotics, she needed a little oxygen, nebulisers, and suction. It was just a parents vision of hell.

Those nights in hospital I sulked and I sulked hard. She was kept in an isolation bay, confined to four walls. I was freezing cold at night, roasting hot in the morning.

My skin hates hospital, my eczema flares on my hands and my eyes were all puffy and sore. We were both utterly miserable.

At first I welcome the take aways, the microwave meals, the pot noodles… but after a few days all you want is REAL food.

You want your own sofa, or just any actual comfortable chair. You want to feel fresh air on your face. You want to be able to drink a hot drink in any damn room you please.

I do enjoy being brought toast in the morning though – there are some perks in all of this. And I do love all of the nurses who provide a friendly distraction from the stress of the whole ordeal.

No one wants their child to suffer. Usually with the flu you would feel terrible for a while, rest, eat and drink when possible. But no, we were in hospital. And it’s the same story every year.

There’s always something that lands us in there. We missed Birthdays, parties, her Christmas play, so much.

For the first time in a long time, doctors expressed concern over Amy’s weight.

It’s an issue I am sensitive about as we work so hard to get calories in her. She moves constantly, she is always burning calories.

She can’t tolerate high volumes, and most formulas and blended diets are too rich for her to digest. So she gets by on very little calories in spite of being on 24 hour feeds.

Her poor little body looks emaciated. Her ribs, collar bones and spine all stick out. Another worst nightmare for a parent.

I want her to feel full, and well, and nurture her. It’s one of the most primitive aspects of parenting – to watch your child thrive.

She has had so many days of not being able to be fed recently, it’s like I can see all of our hard work wasting away.

She is home now and slowly recovering. Her energy levels are slowly increasing, and her face is starting to show colour and joy again.

So in this respect yes, yes I would take her diagnosis away. I would let her have the skills to cough strongly and handle a cold/flu like others do.

Some argue that the disability their child has is what gives them their strong character and personality.

I sometimes wonder how Amy would be had it not been for her Cerebral Palsy. I still think she would be feisty, bossy and demanding. I still think she would be sociable, determined, and cheeky.

I still think she would have that amazing inner strength to overcome whatever is thrown her way. I know part of her brain injury affects her moods and behaviours, I wonder would she be a little more stable with her mood swings.

I know that she wouldn’t have epilepsy, and that would be cool.

I suppose time spent wondering what could have been is time wasted.

Sometimes it can be hard to live in the moment and celebrate where you are today – because sometimes you’re sat in the parents room of the local hospital at midnight for some reason drinking coffee and wondering why life is so unfair.

We just have to wait for those moments where actually everything is stable… and reflect back on those hard times and how we all made it through.

I would take the pain away. I would take the seizures away. I would take the feeding issues away.

So many people focus on the not walking/talking/eating thing. But I think actually when you are in our situation all you want is for your child to have an excellent quality of life, never ever feel lonely, be able to communicate, and to make fantastic memories with those who matter.

People seem to associate wheelchairs with a low quality of life. But actually no, there are many people out there with mobility impairments living absolutely wonderful lives.

A wheelchair does not symbolise being “bound” or “confined”. It symbolises freedom, accessibility, and is exactly like you and I walking.

Amy has never shown to me that she wishes her Cerebral Palsy would go away. I am sure there are many times she feels angry and frustrated by her limitations.

But like any child, she adapts to her situation accordingly and finds ways to do things and love life.

She is the most resilient, resourceful, bright person I have ever known. I couldn’t be more proud of her.

If my child is happy. We are happy. If she is struggling… we all struggle. But we would do anything and everything to make things right again. Just like any good parent would.

So would I change things? Both yes, and no.

“My son isn’t a powerchair user”, I said to the man on the phone. “He can self-propel (for the most part).” “But do you think he would benefit from some sort of power assistance?”, said the gent from the charity.

“I guess he would. He gets extremely tired and his manual chair is not very supportive, so he is getting a lot of back pain. Plus his manual chair keeps breaking. But do we qualify? I mean, aren’t there lots of children who rely solely on a powerchair for getting around, that need one more than us?” I asked.

That’s how it started on the Friday. A call from a charity that was looking for children to donate powerchairs to. (I know!! This sort of opportunity never falls in your lap!)

By the following Monday evening, we had moved swiftly towards a new level of independence for our son.

A move that we really had not appreciated we had needed so urgently.

And I began to experience a mind-shift too – away from feeling undeserving. (Why do we do that? Why is our instinct to always feel like we are taking something away from somebody else, when really we should be jumping for joy that somebody is wanting to help our children, who are absolutely, thoroughly deserving of the right support? What is that about?!)

Anyway, I digress. As we entered the room where the charity representatives were and the rep who was there to assess Hadley’s needs, he said, “I don’t want a powerchair mum. I like my chair.”

“Just keep an open mind”, I told him. “You might just get a set of power-assist wheels for your current chair, but let’s just see.”

Well, as soon as he got into a powerchair to try it out he was off!! And the smile on his face was an absolute picture.

He could go fast and keep up with his twin sister, after nine years of frustration. And I knew exactly what he would say when he finally drove it back to me.

He loved it. His opinion changed in a heartbeat. He so desperately wanted a powerchair. It was independence all wrapped up in a hunk of metal and wheels!

Skip a couple of months and some deliberations with therapists, and we’ve taken delivery of the ‘Lamborghini’ as we call it and life has changed.

From struggling to make friends at his new school and relying heavily on his adult helpers, Hads became the coolest kid in town who could suddenly hold his own and be himself.

Over-night his outlook, posture, happiness and independence rocketed.

And he’s soooooo good at driving it. Cue the inevitable parental guilt for never having even thought about getting him one before! (Although he’s not using it completely full-time, as he needs to keep working on his core strength; and we don’t want him to lose the ability to self-propel.)

As with everything, it does take some getting used to.

Like getting it in and out of the car. We don’t have a hoist that can manage the weight of it yet, so we have to break it down into parts.

Which is totally doable, but in the rain and freezing winter temperatures it takes some stamina…. I need to get myself a Formula One pit crew!

And suddenly the access issues in our locality are glaringly obvious.

I hadn’t appreciated just how many kerbs and steps we must have been bumping up and down with the manual chair.

The powerchair is way too heavy to do that, so there has been a bit of on-road driving going on – heart attack central for me!

And getting it into other people’s houses. Well… that’s an entire separate post.

But even with those challenges, it is an absolute god-send. I can’t see us ever looking back

We will be forever grateful to the Peter Alliss Masters charity and the generous people that fundraised for them, for this life-changing donation.

I walk through the doors and head straight to the baby aisle.

It has been my first go to aisle now for the past number of years. I like to go there first because sometimes I find it the most difficult place to be.

I scan the shelves and pick a few soft toys up, mostly bath toys and give them a squeeze.

I check the tags to ensure that when these are placed in the mouth that they will do no harm. I scrutinise the toy ensuring there is no damage done to it before adding it to my trolley.

I don’t stay long in this aisle. I get very few of these toys then I move on to the musical books.

I stand here for awhile remembering what he once loved and wondering if he would recognise it now; this part of my shopping hurts me so I often leave that aisle and decide I will shop online instead.

Tears often fill my eyes when I am making my list for my boys and checking it twice.

Two of my three boys are easy to buy for – they tell me what they would like or they express an interest in a certain TV programme/game/character etc which helps me hugely with my list.

But when it comes to my eldest I am often left wondering what he would like.

I decided to change this thought to want he needs and perhaps might recognise. I find that way I don’t get caught up on ‘what used to be’, as much.

But, I am human and can wallow just like everyone else.

This wasn’t always the way for me and for him.

Christmas used to be a time when he would make his own list and hand it to me almost daily.

He’d express over and over again what he would like from Santa and I would get him every single thing on that ridiculous list.

I spoiled him.

I remember when they told me how Hunter Syndrome would change him over time, how it would take everything from him bit by bit. “He may make it to his teen years but by then his abilities will be no more than a six month old baby abilities”

I didn’t want to believe them, but in case they were right , I decided I would spoil my boy and give him everything he could need or want (within financial reason, of course).

For many years I lived in denial but was always noting the abilities he was losing, I finally stopped comparing last Christmas to this Christmas and stopped watching the previous years videos.

It was easier for me.

I get messages from family and friends more often now asking what Ethan would like for Christmas or birthdays and often I don’t have an answer.

I simply don’t know.

But what I do know is what Ethan needs for Christmas or birthdays, so I tell them.

I have to say I have a great family and kind friends who do ask what Ethan needs or if there is something they can give a few bob to that we are saving for. I appreciate that a lot.

It is expensive having a child with additional needs.

Families like mine don’t like to say it, but it is expensive.

There is always a piece of equipment that Ethan would benefit from that we can’t afford or that we’ve to wait months, sometimes years to get through the HSE.

Time and Hunter Syndrome don’t mix well.

Then there’s little things like neck pillows or wheelchair supports , blankets etc.

My point is, if there is someone in your life who has a child like Ethan, simply ask them what their child may need.

It doesn’t have to be a big expensive thing but it’s better to get something that is needed and will be used rather than something that sits gathering dust and reminds parents like me of the child that used to be.

To all my family and friends thank you all for always asking.

It’s 9:00 on a Saturday morning. Frantically, I’ve attempted to call our Pediatrician’s office only to discover that they are closed. Dead end.

Next, I try calling the local hospital to get in touch with a nurse on duty. No luck there either.

I listen to an automated voice telling me over and over, “Thank you for continuing to hold.” I feel my patience wearing thin; my daughter has developed yet another dreaded ear infection.

I’ve become a pro at spotting the symptoms, as they are a common occurrence in our house.

Of course, this time, I’ve noted the tell-tale signs at the most inopportune time. As a last-ditch effort to reach someone who can see us on this weekend morning, I dial the Express Care Center.

I explained that I needed to bring my child in, but I didn’t want her to sit in the stuffy, crowded waiting room being that flu season is upon us.

“We’ve been packed since our doors opened” was the response I was given.

I went on to plead my case, hoping for some help.

Couldn’t I just make an appointment, sign my daughter in, and sit with her in the car until her turn came to see the doctor?

In my mind, that wasn’t such an outlandish request. I posed this politely, only to be met swiftly with a blunt “No, I’m sorry.” Someone would have to stay in the building to hold her place in line. Unwilling to back down, I proceeded to continue seeking assistance.

I wasn’t looking for pity; I just wanted a shred of compassion. I explained that my daughter has special healthcare needs and wouldn’t tolerate a mask over her face.

I point out that being potentially exposed to the flu or even a cold virus would not bode well for her.

For her, a cold is never JUST a cold. To my dismay, it was clear that I was taking up too much of her time. She couldn’t help me. She simply offered a final response of  “I understand.”

“I understand.” That last reply felt like a sucker punch.

As a huge lump formed in my throat, in an exasperated tone, all I could reciprocate was “Thank you, but NO, you DON’T understand.” Then, I promptly hung up the phone.

She was merely doing her job, but I was crushed. Defeated, there was so much more that I wanted to say.

What I really wanted to tell her was, “You couldn’t possibly understand.”

I longed to say to her that she had no clue what it’s like when my child spikes a fever and goes into a terrifying seizure.

I wanted to communicate to her how hard it is to console a nonverbal child, who is unable to express the extent of her pain.

I felt like sharing how I sleep on a tiny mattress in my daughter’s room when she’s sick, so that I can monitor her every breath.

I wished to tell her how heartbreaking it was seeing my child hospitalized for five days last year, because she picked up a common virus. I needed to say that my daughter’s immune system isn’t as strong as most kids’, and that I diligently strive to protect her from germs.

I yearned to relay all of this, to impart some knowledge and to gain some empathy.

Instead, I begin administering the antibiotic drops that I luckily found in the cupboard from our last bout with an ear infection.

I resume this typical course of treatment and hope I’ve caught it early enough to wait until Monday.

There’s nothing that parents of children with special healthcare needs wouldn’t do to protect our kids.

I’m not blaming anyone for their inability to comprehend what we go through.

We just need a little bit of grace.

Unless you personally walk in our same shoes…Unless you live THIS life and experience this reality as your “normal”, you just couldn’t possibly understand.

Christmas is one of my favourite times of year. I love the build-up; the decorating of the tree, the Christmas carols, the hot chocolate and the family all coming together.

But since our youngest son was diagnosed with SMA, Christmas time always has me feeling a bit nervous – there are lots of coughs and colds, lots of winter germs and more risk of catching these things with all the social gatherings.

There’s always the possibility that Christmas could be spent in hospital.

We’ve spent the last few years in a Christmas bubble at our house to try to avoid all the winter bugs.

We still take part in all things festive, our faith is a big part of our lives so celebrating Christmas is a special time for our family.

I don’t feel we miss out on any of the festivities – we simply do everything at home wrapped up in a big Christmas bow!!

If your family is like ours then here are a few ideas of what we do at Christmas in our house.

We bake Christmas cookies and decorate them with lots of sweets and coloured icing.

We watch Christmas movies with candy cane hot chocolate.

We have pyjama days at the weekends and the boys write their Christmas lists.

We put the Christmas trees up and the boys help us decorate the house.

We have lots of fun with elf on the shelf and open our advent calendars every morning.

We invite family to our house for Christmas goodies and drinks instead of us having to go out in the cold.

 We put Christmas music on and dance in the kitchen.

We read Christmas bed time stories.

We go for a drive into town to see all the twinkly Christmas lights.

We spend the majority of December at home – some would say it’s a bit extreme but we try our best to make sure everyone is as well as possible because all I really want for Christmas is for us all to be at home having Christmas together at our house.