Christmas is such an exciting time for all children including those with special needs…..or is it?

I realised a while ago that all special needs children are not alike.

This was while attending a Christmas Party especially for “Special Children”.

The organisers had the best of intentions at heart trying to create a special day for all involved.

They had gone all out with balloons and a band. They even had Storm Troopers approaching you when you entered. As you can imagine for a child with autism this is their worst nightmare!

This was certainly the case for our daughter Isla. She has a rare chromosome deletion causing autism and epilepsy. Like most children with autism she has sensory issues and anxiety.

The sensory overload was actually more than I could handle so I can only imagine what it would have been like for Isla.

I just presumed being for “Special Children” it would have been a sensory friendly event.

I was certainly not prepared for all the stimulus that was going on around us.

Our time spent there was fairly brief. Luckily at that stage she was still little enough for me to carry her out of the situation with balloons popping and noise all around us.

In the past balloons popping have been enough to trigger a seizure so the fear is real.

However there were plenty of children having a lovely time enjoying all the celebrations on offer.

There were also quite a few that were also melting down so we were certainly not alone.

It became clear to me then, as obvious as it may seem, that all children with a disability don’t have the sensory sensitivities that autism brings.

On that day there was definitely a realisation of what our limitations were. Even being at an event for Special Needs children we still couldn’t fit or join in.

Since then we have not attended these types of events but there are certain times that cannot be avoided.

It feels a bit like dodging bombs in a minefield at this time of year. An announcement of “a surprise for the children” fills me with dread.

Children with autism don’t really like surprises. Well my child doesn’t.

The treat of Santa visiting to deliver presents will send my daughter diving under the nearest table shaking with fear.

The snow delivery at a school Christmas party is a real cause for concern with her fear of ice. Is pretty stressful managing all these situations for all concerned.

With the correct management and guidance (and medication) though she can sometimes now be a part of these festivities but I think is a relief for her when she gets home to her safe place.

With all of this to deal with she still looks forward to Christmas each year.

That’s as long as we don’t start being too festive too early.

The Christmas Tree is definitely not allowed up until 1st December!

We only now have to get through the main event and make sure Santa doesn’t come anywhere near her bedroom and all will be fine.

As Noddy Holder of ‘Slade’ yells at us from about the middle of September every year… “It’s Christ-maaaaasssss!!!”

Either you’ve started wearing your Christmas jumper in October, had your decorations up in November and have already watched ‘Elf’ 12 times this season, or you feel like King Theoden in the Lord of the Rings movie “The Two Towers” right before the major battle at Helms Deep when he grimly says, “So it begins…”.

There’s even a Christmas meme for that!

However you feel about Christmas, the one unavoidable fact is that for a few crazy weeks everything is different; it’s all change and it is unlike any other time of the year.

Everywhere you look there are masses of twinkling lights, stores are full of completely unnecessary Christmas gifts, and it’s suddenly OK to play Slade, Wizzard and Shakin’ Stevens songs once again!

We drag trees into our houses, light candles, eat food we never eat at any other time of the year and see people we’ve ignored since last Christmas.

And we’re in nativity season too!

A stress fuelled time of rehearsals, costumes, children trying to learn their parts, performances, tears and tantrums (and that’s just the adults!)

Most schools get theirs done towards the end of term, while many churches have theirs to do over the weekends leading up to Christmas itself.

Tensions are running high, no one can find the stuffed sheep, the star is looking a bit crumpled, and someone has to tell little Jack that the actual shepherds didn’t wear Spiderman dressing gowns…

It can all be a little overwhelming for most of us, but for many children with a wide range of additional needs, a bit like ‘Edgar the Dragon in the new John Lewis/Waitrose Christmas advert, it can all just get to be too much.

It’s peak season for meltdowns, with children unable to cope with so much change.

So, how can we help our own ‘Excitable Edgar’s’, and ourselves, to navigate a safe route through the festive fun? How can we all cope in the chaos of Christmas!

A little bit of preparation can go a very long way… thinking ahead, getting some plans in place, equipping our children and ourselves to be able to cope with all of the changes ahead, can make a really big difference to whether we survive Christmas unscathed or not. So here’s a few things we can all do to make a difference:

Visual timetables: Having an advent visual timetable or schedule for each day in the run up to the end of term and then through the holiday period and for the first few days back in January can be really helpful, enabling children to know what’s happening, what to expect, what’s expected of them, equipping them to be able to cope better.

You can find an example here: http://www.take5andchat.org.uk/resources/

Alternatively, you could use a white-board, writing on just that day’s activities and maybe deciding not to put timings on for each thing so as to avoid anxiety if things (inevitably) run late.

Elf on the shelf might also be helpful to reinforce the ‘one day at a time’ approach, bringing something nice to do or doing something helpful and non-threatening.

Father Christmas: On the subject of non-threatening, it might be difficult for some children to cope with the concept of Father Christmas, especially if he is seen as someone who only rewards ‘good’ children.

Whether it’s an in-store ‘Santa’ or the idea that he visits on Christmas Eve, it may be best to avoid this aspect of Christmas wherever possible for children who may be very unsettled about this.

Just think about the well-known verses below through the imagination of a child who takes things literally; the whole idea could be terrifying!

“He’s making a list,
And checking it twice;
Gonna find out who’s naughty and nice,
Santa Claus is coming to town.

He sees you when you’re sleeping,
He knows when you’re awake;
He knows if you’ve been bad or good,
So be good for goodness sake!”

Eeek!!

Being equipped – shopping survival pack: As additional needs parents, we tend to pack for a three-month arctic expedition when popping to the shops anyway, but making sure we’ve got everything we need if we take our additional needs child out at this time of year is essential.

Ear defenders? Snack? Drink? Favourite toy? Backup favourite toy? Sunglasses? Sunglasses?? Yes, they can help reduce the glare of the lights and help children who struggle with having to make eye contact.

What does your child’s shopping survival pack look like? There is some more helpful shopping survival information for you here:

https://www.autism.org.uk/about/family-life/everyday-life/shopping-strategies.aspx

Pick your times: If you have to take your child to the shops with you, and you’ve got your shopping survival pack with you, carefully choose when you actually go to the shops… Early in the day or in the evening if you can, avoiding weekends and days like Boxing Day when the sales start.

Some stores are holding special ‘Autism Hours’ which offer quieter shopping sessions, sometimes with reduced lighting and also with additional support if needed; it’s worth checking with your local shopping centre to see if they are running these.

Keeping it calm: Many parents try to reduce the amount of change that their children experience over the Christmas period. This might include putting up just a few tasteful decorations rather than making our houses visible from space, for example!

It might also include having just a few special, carefully chosen, gifts for them to open, spread out over a few days so that they can focus on each one, rather than the Argos delivery driver needing a fork-lift truck to deliver to us.

For many of our ‘Edgar’s’, home is their ‘safe space’, a place where they can be themselves and not be anxious about what might happen. If this safe space is suddenly invaded by 30 friends and relatives, most of which they won’t have seen since last year, all slightly tipsy from a trip to the pub, it is likely to get overwhelming very fast.

Limiting visitors to a small number of well-known family and friends, with recovery or ‘recharge days’ between each visit, can help. These relaxed, chilled out recovery days are vital for our ‘Edgar’s’ to re-charge and be able to cope better with the next set of visitors (see below).

Food can be very important for our ‘Edgar’s’ too; they often have a limited range of foods that they will eat and so Christmas with all of the different food, excessive choice and over indulgence can be hard.

Make sure that they can still choose their favourites, even on Christmas Day, the security of familiar flavours can really make a difference!

Recharge days: During the Christmas period it can be easy to pack our diaries with activities, visits to friends and family, feasts and fun, but we all need some recharge times too, especially children with additional needs.

Schedule in some quieter days, a long lie in if that works for you, chillaxing in front of the TV, or maybe a gentle stroll in the countryside or along the coast.

Maybe even a time to reflect on what Christmas is supposed to be about, a celebration of the birth of Jesus bringing hope and joy to the world. As the angels sang, “Glory to God in the highest heaven, and on earth peace to those on whom his favour rests.” Luke 2:14

You know what works for you, but you might need to block those days out in your diary now, so they don’t get used for a visit to the in-laws instead!

Get support and get time out: A long school holiday can be really hard work for those of us that are caring 24/7 for a child or children with additional needs.

Even our recharge days will involve lots of care and support for our children, and we need to make sure we don’t completely neglect ourselves during this time.

It’s peak season for illnesses of various kinds, and exhaustion and neglect can weaken us and make us more susceptible to bugs.

It can be a big ask, but is there someone who could look after your tribe for a few hours while you look after yourself? Maybe go and get pampered, or go to the cinema or out for a quiet meal with your partner or a friend?

It’s not wrong to look after yourself a little, and maybe you can do a trade where you repay childminding one day with you looking after their children another day?

Hopefully these tips will get you started on your own plan to help you to survive the Christmas chaos with your own ‘Edgar’s’… Each of us is different, so our plans will reflect our differences, but if we put some thought and preparation into this now we might just survive and get to the other end in one piece without our Christmas going up in smoke, ‘Edgar’ style!!

Merry Christmas!

The festive season is well and truly in full swing. Our tree is up, unhealthy tasty foods are slowly filling our fridge, and a pile of presents blocks doorways awaiting wrapping and tagging.

It can be a really tough season for some special needs families. Now this post won’t apply to every family, we are all different; however, I am writing what I feel works for us and hope that it resonates with others too.

There are many things you can do to help families like ours at this time of year.

Very rarely will it ever cost any money, just a little extra thought and some of your precious time.

This isn’t meant to be a patronising post, we already know you’re doing your best and we see that.

But sometimes it can help to have a little guidance from those who are going through things first hand, and sometimes we are scared to ask as we don’t want to burden you.

Remember that we want to be there, but can’t always!

I can’t stress enough how much effort goes into simply leaving the house for a few bits at the shop.

So when you approach a season with overwhelming social obligations – it can get a bit overwhelming. Often our trips out involve a lot of planning – space, accessibility, changing facilities, will it be too crowded, will there be space to escape if need be, what will we need to pack so we don’t have to cut the trip short etc.

Ask how you can help

This is a simple one and probably a bit obvious, but honestly it’s so important. Sometimes we like to pretend we can conquer it all by ourselves so we might need a bit of a nudge to encourage us to accept help.

Sometimes even just popping by with a few bits from the shops when you’ve been for your own stuff.

My daughter gets poorly constantly throughout winter and we spend a lot of it housebound.

It can be really isolating and actually just knowing you’re thinking of us means the world.

If we are in hospital we would snap your hand off to get a visit – we get bored, and I struggle to get decent meals!!

A meal delivery and a listening ear is the greatest gift we can ask for. We know it’s likely you won’t be able to care for our child a few hours whilst we go Christmas shopping etc, but there are lots of little ways you can help, even just offering to play one on one with our child whilst we wrap presents.

Check with us first about venues!

I do worry sometimes that we come over a bit bossy, I like to be able to go with the flow and generally am a people pleaser – but sometimes when it comes to my child I have to make an exception.

I worry constantly about coming over neurotic, self righteous or self-important, but it really is a big deal. For our situation – we prefer places where there is a lot of room, not too much noise, has Wifi, easy access to get outside/away from the hustle and bustle.

Every new place we go you can guarantee I have vetted it to the extreme – does it have steps to get in? Is there disabled parking? Do they mind us rearranging tables to fit a chair in? Are they okay with the fact that my daughter will be there but not eating?

If all of the boxes aren’t ticked it can ramp up our anxiety or cause issues on the day – none of us want that, we want to see you and have the best time.

Accept that we do things differently

I am lucky that our friends and family are very innovative and thoughtful people.

They know that Amy’s not going to be enjoying opening an advent calendar (she just isn’t interested!), so they will find ways to make sure she still gets the same thrills she’s entitled to.

For example on Halloween… trick or treating is a no go for us. She won’t go out after a certain time or she gets seizurey and upset, she also doesn’t eat, we also find a lot of homes around here have limited accessibility – so instead my Auntie bought her a colour changing ghost toy.

It was such a thoughtful gesture. My mum bought her a nice costume to wear, and we also made pumpkin play a more sensory themed activity.

Sometimes it does cause me a bit of grief we can’t enjoy the same traditions as other families, or that I can’t relive my childhood with Amy… sometimes I do feel quite downhearted about it all and wish things could be different.

So when you see us doing things the way we do them – know that it is for a good reason and we are trying our best!

Unsure about presents?

Ask! Yes our daughter can be notoriously difficult to buy for. She doesn’t have that “mummy can I have this” feature that her able bodied peers often have.

In fact she still thoroughly enjoys most of her toys from 5 years ago! So every year she seems to get less and less from us, because why force something?

Mainly we have been asking for clothes. I know as a child this is desperately unexciting, but Amy doesn’t seem bothered.

I remember last year feeling hurt and deflated because she had zero interest in any of the toys we had bought for her.

I had been so excited and all she wanted was to watch her videos on You Tube. She also has a lot of toys, she seems to acquire more and more.

What I think would be nice are hand-written vouchers “one trip to the shops to have a look around”, “one trip to the garden centre to see and smell the nice plants.”

Or, donate to one of the many charities that help us! There are loads of worthy causes.

It’s great knowing that money is going somewhere that will benefit many. If there is one thing I have learned over the years as Amy’s mum is that memories and experiences are so much more valuable than any other gift.

Know that we are grateful and we love you

Sometimes it must feel like you have to accommodate for us constantly. I hate the thought of people thinking our relationship is one sided.

We appreciate every single thing you do for us… we may not reply to messages as promptly as we used to, we may not always reciprocate as much as we would like.

Please don’t abandon ship! We are just a bit navigating unknown waters and getting through the days as best we can.

Is there anything you would add to this?

In one of my previous posts, I write about life having its own set path for you.

No one has the same path, and no one should compare theirs to others.

I mean, ten years in college and I am STILL attending it. Why? Because life happened for me.

I initially was going for teaching and changed my mind to a program called Surgical Technology.

At the time it was a year certificate medical program and seemed appealing because it was short and sweet.

In 2010 I started my pre-requisite classes with a goal in sight. But moving cities happened, I met my husband and we wasted no time on starting our family.

With my stepson being 6 years old, we knew we wanted to add a sibling to his and our life.

Blessed with a boy, we had Oliver who was diagnosed with Spina Bifida. Fast forward to 2019, Aaden is 12, Oliver is 5 and Theodore (the youngest) is 3 years of age.

Like I said, life happened! And you know what? I would not change a thing.

But back to the point, I finally applied to the Surgical program and made it in.

For certain colleges, there may be an admission process that inquires testing as well as an interview before being selected or not.

For the college I chose, I made it down to the interview process. I will always remember the one question that stood out the most to me.

“Tell me why you think you belong in the program. Why should we choose you?” For some this may be something to think about, or as simple as formulating the “right” response.

For myself, it could not have been easier to answer, as I spoke straight from my heart.

Why me? For starters, my son at the age of five, has already received more than six surgeries.

As a parent who has a child or children who are constantly receiving procedures or surgeries, this is such a difficult thing.

We pray for speedy recovery, for everything to go smoothly, and above all that the staff and doctors perform to their best.

After all, it is our children under their hands and in their care. I knew now that this was not just an easy way to getting a degree, but my calling. I wanted to be able to provide what I pray for, for other families.

I wanted to be able to truthfully tell them that I understand, because I have been there. I wanted to be that comfort for a scared child, alone in an unknown room.

What I plan to graduate in, is so much more than career for me.

It is a passion I have to create comfort and peace for anyone undergoing a procedure, no matter their age.

I may not have known it ten years ago, but this was my career calling and I am so glad I answered the call!

Is it just me or is anyone else feeling completely inadequate by not having an Elf that does naughty things at night? (Hmm that sounds a bit wrong, but you know what I mean!).

Between therapy and hospital appointments, working, housework, homework, housing adaptions and finding the time to actually do the Christmas shopping, I cannot even contemplate adding something else to the list every evening.

Eating and sleeping would be good if we could fit it in! How are people even finding the time?

So I’ve told my kids, the reason we don’t have an elf (or two) is because they eat all the chocolate in the house and if that happened, we couldn’t afford to replace it so there wouldn’t be any for them.

Strike me down, I’m a terrible parent. But no. Just no. I can’t.

I’d like to blame social media, but that wouldn’t be fair. Because even without seeing what other people’s elves are up to, the kids would still hear about all the shenanigans from friends.

They would still feel like they were missing out.

And…putting the Christmas tree up. Is it just me or has everyone put them up early this year?

I’m being hounded by my kids and feeling dreadful. But we don’t even have a room that is not like a building site, or full of furniture that has been moved out of the rooms that are being plastered, to put a tree in!

Don’t get me wrong, I’m hugely grateful that we are able to have adaptions, but believe me, I’ll be sooooo glad when they are finished!

Not just for my son’s mobility, but for my sanity. For now, I just can’t put up the sparkly Christmas stuff yet!

I think the stress of life is compounded at this time of year for some of us isn’t it?

The guilt factor just seems to ramp up a gear (or six).

As if we don’t already feel inadequate enough for the rest of the year, the pressure of ensuring your family has the perfect festive season is very real.

Even when you don’t really do a big Christmas. I wish I could relax and enjoy it more.

My daughter even said to me last night: “Is it going to be an awful Christmas this year mum?”

Pass the (mulled) wine.

Christmas is just around the corner. It’s my favourite time of year.

It’s full of cosy nights in, lights everywhere, people spending time with family, eating lots of food and gift exchanges happening.

Christmas is a time we celebrate those around us. Ethan is the same as me and absolutely loves Christmas too. His face lights up when he sees Christmas lights strung all around the house.

The smell of yummy treats in the kitchen excites him so much.

Each Christmas when we’re all celebrating I can’t help but wonder if this will be the last with my precious boy.

Lots of people ask me why I do all the lovely things with Ethan, the simple answer is that I don’t want to have any regrets.

We pack so much into our days because I want to know that I’ve given Ethan all the experiences I can.

This year will be filled with lots of messy play activities. Peppermint smelling playdough, baking yummy cookies, visits to see Santa, sensory stories and Christmas movies snuggled under blankets.

We will make every memory we can.

Let’s not forget though that caring for a child with a life limiting disorder never stops.

There will be medicines to give, syringes to wash, seizures to tend to, illness to keep away from, pads to change and appointments to attend.

Our Christmas will be adapted to fit around Ethan routine and will allow him to enjoy Christmas just like us.

He will have blended Christmas Dinner and enjoy unwrapping all the carefully selected sensory toys he has been given.

We will be trying to keep out of hospital and hope that Ethan stays well and doesn’t get overwhelmed by the whole festive period.

It’s a big sensory ball of fun but can also be too much sometimes. Juggling this can be tricky but hopefully will be manageable.

Putting aside my fears and worries for another day and living in the moment is the best way to enjoy Christmas together.

I am incredibly thankful that I get to celebrate Ethans 10th Christmas with him.

I pray its not the last.

Someone recently asked me how long it took me to find a positive way of dealing with the diagnosis of our son. This is a tricky question because I know I have notoriously been a positive person my entire life.

My glass is (almost) always half full. But I will tell you that upon receiving our son’s diagnosis my cup was empty here and there, and I still have my days when my cup tends to tip over and before I know it I am in tears in my kitchen without warning.

Staying positive isn’t easy. Staying positive while caring for a medically fragile child is hard.

Keeping a “never give up” attitude day after day for years can be exhausting.

But I will search for hope in the darkness rather than sit there with my head in my hands.

I will lend a hand and lift up those around me even when I feel depleted. Because it’s my choice.

I have a choice, we all do. This is the life we’ve been given. The cards we’ve been dealt.

“You don’t have the right to the cards you believe you should have been dealt. You have an obligation to play the hell out of the ones you’re holding.” Cheryl Strayed

Our son was born with congenital disorder of glycosylation; a rare, life-threatening disorder.

He was not the child we planned. We had to let go of the person we envisioned him to be and the dreams we had for him.

Once we did that, we could celebrate the child we do have.

This is the hand we were dealt, and from day one, I have made a promise to him that I will play the hell out of this hand. I will do everything in my power to help him reach his full potential, whatever that may be.

And we will shower him with love and attention, practicing gratitude for each and every day we have the privilege of waking up with his smile. We will celebrate the triumphs, no matter how small.

We will hope. We will try it all. And we will love beyond measure.

Oh how I wish there was a timeline.

I wish I could tell newly diagnosed parents that in a few days you’ll feel better, or in months you’ll finally come to terms with this new life of yours.

And just maybe, in years you won’t envision all the things he “should” be doing. Or at the 100th specialist appointment you’ll drive home without tears stinging your cheeks.

But there isn’t a timeline, because it’s in you, and your timeline may look different than mine. And that’s ok.

We can be bitter, or we can be better.

Try to replace one negative thought with two positive ones.

I know that sometimes searching for that tiny glimmer of hope takes longer than sitting with your head in your hands.

But keep searching. We can choose joy or we can choose misery.

And one thing I know for certain, a joy filled life is certainly better than one filled with misery.

It’s in you to make those choices. Choose wisely.

Dear Readers,

I have well and truly lost the plot.

Life is rather full-on, Sam is having yet another growth spurt so his meds need tweaking to keep things stable and I never realised how much admin one human would be expected to do on a daily basis!

I’m a Mum, but at times I’m also my son’s social secretary, appointments clerk, general manager and when needs be resident fire-breathing dragon… it all takes a phenomenal amount of juggling.

Currently however, the bane of my existence are meetings; EHCP meetings, care agency meetings, and this week an absolute joy to attend: a continuing healthcare (CHC) meeting to ask for more funding to ensure our son’s safety.

Mutters darkly into mug of luke-warm coffee (already twice reheated in the microwave)

Of all the appointments and meetings we navigate with the Dude, I think this one is the one I find toughest.

While at the same time being incredible grateful that we have such support available to us, it’s the meetings equivalent of a slap round the face with a plank of wood.

There is no getting away from the hard facts that our son is very vulnerable, and that even the additional support he receives in the way of a wheelchair taxi specifically for him together with his own passenger assistant is no longer enough to keep him safe on his journey to and from school.

It is a very bitter pill to swallow.

The extra funding is needed because the Dudes seizure control has deteriorated, and his wonderful passenger assistant is not allowed to give him oxygen, emergency medication or use his suction machine should he have a severe seizure while in the taxi.

It means he needs a nurse or other trained person to travel with him and that costs.

We’ve been through this circus before. Twice.

First time we applied for funding for overnight care – it was granted but no care agency took up the contract.

We reapplied, this time to be rejected because he basically wasn’t disabled enough.

I think that was the day something snapped as I realised that we would have to fight tooth and nail for everything he needed.

We’ve been fighting ever since.

I don’t know what the outcome of this application will be. For now Sam is happy, enjoying life and having a blast at school so I’m happy.

After all, that’s all any parent wants for their child isn’t it?

Today is a good one. For now, tomorrow can take care of itself.

It was world kindness day last month. A day aimed at making the world a better place by celebrating and promoting kindness.

Something that we’d all like to imagine is a daily occurrence, but sadly that isn’t always the case.

We hear so much negativity in the news, so much sadness and all the bad things happening in the world that the kindness tends to take a back seat. Kindness isn’t talked about as much as the negativity.

It’s commonplace. I’m guilty of it too.

When something bad happens or somebody does something that makes me unhappy I’m quick to rant about it, but I won’t always be as quick to scream and shout about something good or someone being kind.

Why is that? In all honesty I don’t know. Lately I have tried to be as open about kindness and good things happening as much as I am about things that make me mad or sad.

I think it’s good for our mental well-being to talk about the good happening in our lives, to focus on kindness and nice things.

I know from experience that talking about negative happenings can only cause me to ruminate and spiral further into a cycle of depressive thoughts so talking about happier, kinder experiences can only have the opposite effect, right?

I’ve experienced kindness by the bucketful (and then some) this past year.

It’s been the most trying time of my life but in amongst the rough ride, I’ve regularly updated a Facebook page dedicated entirely to the journey that my beautiful boy Jaxon is on.

I started the page initially because I couldn’t keep up with the abundance of messages that were landing in my inbox daily for updates on how Jaxon was getting on.

Friends of friends began to follow his page and before I knew it there was a few hundred people eagerly willing my baby boy on.

As the months have passed Jaxon’s followers have grown and grown, along with it so has the level of compassion and support we have received.

So many people have been on this journey with us through numerous lengthy hospital admissions, PEG surgery, several episodes on life support, difficult appointments, tough diagnoses, meltdowns, sadness, happiness, fun times, trying times, the lot.

Many times throughout the year I have been left entirely overwhelmed and a bit of an emotional mess after being shown complete and utter kindness from people I’ve never even spoken to, let alone met.

My faith in humanity has been well and truly restored and in those moments our journey hasn’t felt so big, I haven’t felt so scared or alone and I’ve realised that no matter how much sadness and how many evil people there are in the world, there’s as many good and kind people to outweigh them, they just don’t get the praise that they deserve.

When we were in hospital in the Summer, I received a lovely package from a kind lady that I’ve never met who follows Jaxon’s page.

She knew I was struggling with hospital life and I was so incredibly overwhelmed by her kind gesture, it came at the perfect time when I felt like the bottom of my world was falling out.

Jaxon has received some lovely gifts also, from strangers. We both have over the past year.

People who don’t know us, have followed his journey and through entire kindness have wanted to do something to help.

Those gestures are priceless and I hope those who have sent them know how hugely grateful I am.