Choosing to be Grateful

When I first discovered my son Jude was autistic, I have to admit I found it really tough. He was just 18 months old, the future I’d imagined for him, and for us as a family seemed to like it was being ripped away from us.

I focused on the fears of what the future held.

Would he ever talk? Would he ever make friends? Would he ever be able to look after himself?

Over the next few years, things would get harder.

Jude’s younger brother Tommy was also diagnosed at 18 months old, and suddenly we are challenges seemed to have doubled.

The world was so unfair, what had we done to deserve this?

As yet unable to speak, there’s been meltdowns, self-harming, a severe lack of sleep, sensory issues, anxiety, and at times quite an isolated way of life.

In the early days I really struggled, I kept it all inside and rarely spoke about it, and whilst I was always full of love and did everything I could for them, deep down I was so upset about how difficult life was proving to be for my boys.

As time went on, as I learned more about autism, more about my sons, I started to get stronger.

Started to focus my energy on finding ways to learn from each challenging experience, to make life easier and better for everyone.

It’s not been easy.

There’s been a marriage break up in there too, and my boys struggle so much around each other that for the last few years me and their mum have looked after one each, and swap every couple of days.

They both need 1-1 care, and this is what we’ve found seems to work best.

But despite the rollercoaster of the last ten years, I am able to realise that I have much to be grateful for.

1. Both of my boys are physically healthy: Yes there might be meltdowns, and challenges coping with the everyday world, but they have no illnesses. They’re healthy, I’m healthy, and hopefully, we all will be for a long time to come.

2. The boys go to a fantastic school: Many families of children with autism or other special needs really struggle to find the right school setting. Often they might fall into the gap between mainstream and specialist provision, with neither being the right option. Some families have little or no choice and find themselves stuck.

I’m grateful every day that we’ve been able to find the right environment that both pushes them to learn, but is also full of love and cares for their wellbeing.

3. I have support from friends and family: My heart breaks every time I get a message from somebody who’s doing this alone. This life is tough to balance, and that’s with friends and family who are there to support me. Some parents I speak to haven’t had a night off in years, let alone get any time to do something for themselves.

4. Since diagnosis we’ve had support: I know this can be a lottery dependent on where you live, or when you received your diagnosis.

But overall I’m pretty happy with the support we’ve had over the years.

It could have been better, but I also know from speaking to others it could have been non-existent.

We were lucky to get a diagnosis so young for the boys and to be in the system ever since. Whilst there aren’t too many options when it comes to activities locally for the boys, we’ve generally not had to wait too long to see professionals, and have attended a number of courses.

I know this isn’t the case for many, for that I’m grateful.

5. We live in the UK: Whilst we might complain about the lack of support, knowledge, or education options available to us, sometimes we have to look at the world as a whole and be grateful we live where we do.

Imagine living in a country that had suffered a natural disaster, like Mozambique, Zimbabwe or Malawi have recently. Imagine living in a country that has no special education set up, no support system, and a real ignorance or complete lack of knowledge around special needs.

If life feels tough now, imagine your family living in that situation.

6. Both of my boys are making progress: It might not be at the same rate as other children their age, the steps might be smaller than I imagined years ago, but they’re making progress.

Life is very different than it was 2 years ago. Life’s very different than it was 5 years ago. Progress might not be linear or straight forward, but overall things are definitely getting better each year.

Our family is one that’s full of love, and for that I’m grateful

Life as a special needs family isn’t straight forward, and very different than what I imagined it might be.

There are still many challenging days, but whenever I start to feel low, I try to focus on what I’m grateful for. It works for me, maybe it will work for you too.

What You See on Social Media Isn’t Reality

This should be a mantra that I repeat to myself over and over every morning in front of the mirror. That, or I should really cut down on my use of social media.

It really can have such a damaging impact on someone.

When we use Facebook, Instagram, Twitter, etc, we are choosing what we let the world see of us.

Sure I do like to have a moan or a rant from time to time, but aside from that, it’s happy family outings, showing off cute things my child made at school, new purchases I want to show off and so on.

I couldn’t tell you the number of times per day I scroll mindlessly through my social media – jealous. Jealous that people get to go on holiday.

Jealous that people have great jobs. Jealous that people have able-bodied children that can enjoy anything and everything. Jealous of people making pregnancy and birth look easy.

The aftermath of that is the guilt I feel – these people are people I like and care about. I want them to have amazing happy lives… I want that too…

And I’m not sure if what I am seeing is a true reflection of their lives or not. It’s all very confusing.

Jealousy is such an ugly emotion. I repulse myself when I let the bitterness take over.

I try to shrug it off as much as I can, but one look out of the window at a happy family walking their dog can set it off again. The ugly green monster I never invited round.

People often say to me: “You always look so nice.” Now I’m not saying that as a humble brag… what people mean is… most days (not all) I try to do my makeup and hair and not wear my scruffs.

Obviously, I don’t post pictures of me when my eyes are puffy from crying and I’m covered in formula, bleach-stained clothes and tatty hair.

By taking a little care of myself every day I’m basically trying to convey to the world that this is a person who is coping… just like everyone else.

This is a girl who wants to be taken seriously by professionals and doesn’t feel that she can create that impression by wearing her 15 year old jogging pants (that have never once been used for jogging.)

Usually, those pictures are accompanied by a lighting effect or filter to try and reduce the eye bag situation.

4 days ago my daughter had surgery in a hospital far from home.

The hospital was actual perfection – never seen one so inclusive and with such great staff and facilities. But there is no getting away from the fact that it’s a tough time for everyone involved.

If you looked at my social media you’ll see my posts about how amazing the hospital was. You’ll see pictures of my daughter enjoying the playroom. You’ll see my picture of me with my nice morning coffee.

What you didn’t see was me holding my daughter’s hand and crying in the surgeon’s room before they sent her to sleep.

Tears rolling down my face saying “be a brave girl for mummy”, “I’m so sorry you have to go through this”.

You didn’t see me and her dad sat outside in the waiting room, nervous leg tapping, heart pounding, playing over and over in my head the awful things they could come out of that room and say.

All I wanted to know was that she was okay.

What social media saw was the pictures of the beautiful park we walked around to distract ourselves from the fact that our 5 year old was under the knife.

We are home now. I posted a few selfies with Amy earlier. I am obviously wearing no make up and look a bit of a mess, but I wanted everyone to see her gorgeous smiling face and her enjoying life so soon after the surgery.

The reality is I have cried today quite a bit. Not in front of her, but privately when she’s distracted by videos.

She hasn’t smiled all day like she would have you believe from her facebook page. “She always looks so happy” people tell me who follow her page.

But that’s because it isn’t as engaging to post 3-hour videos of my child screaming and crying in pain.

This afternoon she got very distressed. She needed to nap but her body wouldn’t let her.

It’s so frustrating and I always feel powerless.

I did everything in the list. I tried her in her bed, on my lap, in a comfy chair, on her mats on the floor.

We tried pain killers, toys, videos, singing, even blowing bubbles. Nothing worked. Sometimes neurological irritability or pain is just that, and you need to just try and breathe through it and wait for it to pass.

So that’s why the photo for this blog is of my child crying. I take no delight in brandishing that to the world. But sadly today that was our reality and to pretend it was anything other than a set of challenges would be lying.

When she is upset her muscles take over even more.

She twists, arches, thrashes and kicks. Today I got kicked in the throat and back handed in the mouth.

She rips clumps of her hair out (often needing socks put on her hands to protect her from herself), spits out, chokes, and screams.

It’s so distressing to watch and the picture for this post accurately depicts what I’m describing. I wouldn’t normally stand back and take a picture.

I’m usually right in there trying to subdue to situation, and immediately after that picture that’s what I did.

I don’t do it for attention, or sympathy, merely to show that actually there are two sides to every story.

For every smiling picture you see, there’s probably a huge meltdown before or after it.

I posted recently from the special needs dentist place. Social media saw a happy little girl enjoying her favourite book in the waiting room.

They didn’t see 3 people restraining her, blood, crying, and then me crying the whole way home from the trauma of it all.

I could probably give 1001 examples of what people saw vs what people didn’t see. I want them to see the good, the good is there. But the bad is there too, lurking in the shadows.

So please don’t ever feel like you aren’t doing enough.

That you should have more friends. More money. More holidays. That you should be doing more therapy with your child.  That you should be checking in to more fancy bars. That you should be checking in to the gym more. That you should be doing anything other than what you feel is right for you at that moment.

Comparison is the thief of joy. I’ve said it before and I will continue to say it.

We can always wish we had a bigger house, or more space, or a smaller dress size. It is only human to want more than what we have.

Seeing that picture of Amy pains me. I had begged with her to calm down, pleaded.

I had exhausted all options and felt like a complete failure.

I wanted to be on my own and with people all at once. I didn’t know myself what I wanted. I think maybe today I needed not social media, but an actual friend there with me helping me get through it and guiding me through all of the emotions.

The other problem I have with social media is that a huge amount of my friends are families like ours. Every bit of bad news they get, every illness their child gets…. I take that on. I feel it deeply. I care so much and know how they feel, that I can feel my energy drain for me as if I am that person feeling that same set of emotions.

I either care too much, or I care too little. I spend a lot of time wishing things could be easier for so many people.

I see people fundraising for things they didn’t know they’d ever need… and I wish I had endless money so I could wave my magic wand and make their lives have one less problem.

As much as I loathe to see gloating… it pains me even more to see suffering.

It was only 4 days in the hospital. But it was entire nights of endless beeping, crying children, chatting nurses, a hard bed, a cold room and so on. It’s going to take a toll.

We eventually got home and I settled for a bowl of cereal as I was too tired to cook.

I am slowly making my way through the washing and starting to return to our normal whilst also looking at all of the world book day costumes… a costume I didn’t get to buy this time or partake in.

It’s easy to feel bitter.

I am sure that this time next week things will be much calmer and happier, but at the same time, new challenges will no doubt have presented themselves!

So in case you needed to hear it today…

Your battles are your battles. Your challenges are your challenges. You are good enough. You aren’t a failure.

How you feel is valid. It doesn’t matter if someone is worse off than you. You can only do what you can do.

Be kind to yourself. Social media isn’t real life. You will get through this. You may feel lonely, but you are not alone.

It’s okay to cry. It’s okay to feel nothing and everything all at once. It’s okay to not care… or to care too much.

Cerebral Palsy Awareness Month

March is cerebral palsy awareness month, a time to spread awareness and love for all the people living with this condition.

As you all know sadly it’s what my little boy Ryan lives his day to day life with.

This is due to no control of his own or my own.

Back in 2015 when Ryan was brought into my life and at the young age of 21 I never knew what Cerebral Palsy was, let alone believed that I would have been a Mum to such a beautiful little boy fighting such a massive battle.

I am now 25, a full-time mum, career, Physio, nurse and whatever other job role fits, to my son… Not qualified of course but after 4 years of doing it, I may as well be.

I lift and lay him, change and clothe him, feed him via gastrostomy mickey button which I will change myself, do his daily Physio with him, administer drugs and every other job in between alongside his amazing daddy.

Ryans full CP diagnosis is level 5 quadriplegic mixed dystonic/ spastic Cerebral palsy.

To simplify this, this means his whole body is affected.

His body tone goes from stiff and ridged to loose and floppy and he cannot control his movement.

Cerebral palsy comes in all shapes and sizes and no 2 people living with this condition is the exact same.

Ryan cannot talk which makes him nonverbal, he can, however, tell everybody what he wants in other ways by shouting, smiling and moaning.

He cannot walk and by the looks of it will not walk as his left hip is completely out of place.

He requires specialised seating and a standing frame.

Ryan cannot eat due to an unsafe swallow this is caused by his inability to control his muscles; which is why there is a mickey button.

He cannot sit as his muscle tone is all over the place, he has epilepsy and has both hearing loss and vision problems.

Ryan is fully dependant on myself and his dad and will continue to be for the rest of his life.

However, the image you have no doubt pictured in your head of him is not a true representation of the little boy he is. He is just like any other 4-year-old boy.

He loves to carry on, he loves the rough and tumbles. He loves to be tickled and be made laugh.

He has the same wants and needs, the same expectations as any other person.

He wants friends, he wants attention. He wants to be accepted and loved for just being him.

Cerebral palsy awareness month really is important to our family because it allows us to educate the world about children, teenagers, and adults just like Ryan.

I think when you live a life with no difficulties it can sometimes shadow the fact that there is in-fact people out there who are living their everyday life with CP.

When I advocate about Ryan’s condition it’s not to look for sympathy, I don’t want people to think I’m a hero mum.

I just want people to be aware of the condition that globally affect approximately 17 million people.

Health is a thing many of us take advantage of .

We take being able to wake up and just do what we want for granted.

To help make a difference to those living with cerebral palsy why not let others know about this condition, help spread awareness about these amazing 17 million people so that the future can be more understanding and brighter.

I Looked at Her, and Saw Myself

Our little girl, Heidi, spent the first few weeks of her life in NICU, after a HIE* event shortly after she was born.

I found it hard going back to the NICU once we were home.

The first time was to drop off a few thank-you goodies for the nurses a couple of months later.

Driving up to the hospital had me feeling the same things as when we first used to go and see Heidi, where I couldn’t get in there quick enough, but at the same time didn’t want to go in in case it was bad news.

Pressing the buzzer to get into the unit had me remembering how anxious I used to feel, wishing that someone would hurry up and open the door so that we could get to our girl.

The smell of the antibacterial hand gel wafted over me and I was right back there, back at the start, back feeling like my head was spinning and my stomach was churning.

I reminded myself that we weren’t back there though, Heidi was at home, and we had so much to be thankful for.

I still wobbled the next time I went back, but it wasn’t as bad, and the time after that got better again. So much so, that my last visit felt completely different.

I saw the NICU as the amazing place it is, with the doctors and nurses working their magic on the most precious of babies.

The familiar bing-bong noises of the various machines rang out, but I didn’t flinch at the sounds like I had on previous visits.

As I was sitting waiting to meet one of the consultants (I had been invited along to take part in a research study), I saw a mum walk in, through the double doors, to the hand gel station, and along the corridor towards her baby.

We briefly made eye contact; I smiled and wanted to say so much to her, but it didn’t seem appropriate.

For that brief second, I could see myself in her.

She looked tired, and anxious, and like her heart was about to burst because of the situation she was in, but she also looked like the strongest mama, there for her baby, and doing whatever she could to get through.

Since our NICU experience, people have often said to me that they “don’t know how we did it”.

You know what? Neither do I!

I look back, or I look at the mum in the corridor, and I wonder how on earth we coped – I have vague recollections of not really showering or sleeping that much, and going from not eating anything in the first few days, to eating comfort food at every opportunity, but other than that it’s a bit of a blur.

You really do just have to do what you can to get through the day, and when getting through the day seems too much, aim for the hour, and if the hour seems too much, focus on the next five minutes.

I so wanted to tell that mum in NICU that she was doing great, and that things would be ok, but I also want people to know that “ok” may not be as you had planned.

Heidi first came home from the hospital after 8 weeks – and she’s just turned 4!

Yes, she has complex needs (cerebral palsy, global developmental delays, epilepsy, and a tracheostomy to name but a few), but we are “ok”.

We enjoy life. We smile. We laugh. We have fun – something that in those early days I didn’t think would ever be possible.

There are of course tough times too, but we battle on and go back the same philosophy of doing whatever we need to do to get through.

I don’t think anything can prepare you for NICU or the journey beyond, but you can get through it. To that mama, I hope you’re doing ok.

*HIE stands for hypoxic-ischaemic encephalopathy, which in simple terms is a lack of oxygen to the brain.

Deciding Whether to Medicate Your Child

As a dad of two autistic sons, there have been many things over the years that I wasn’t prepared for, or had any real understanding of before they happened.

There’s been no speech in nearly 11 years, sensory challenges, meltdowns, anxiety, and a severe lack of sleep.

But one of the biggest issues to rock me was when the subject of medication was first discussed for my son Jude, who was 6 at the time.

Jude had been having severe meltdowns for more than 2 years and was becoming increasingly violent in his self-harming.

It was happening every day, sometimes more than 20 times a day.

It was heartbreaking to watch.

Still, I was shocked by the suggestion. How could medication be the answer? Surely he was too young. I didn’t want him to become a zoned out zombie, surely that’s what they were implying.

Once I got over my initial thoughts and considered it further I began to calm down and see some reason.

For some of you out there, medication may already be an essential part of your child’s daily life, either for a physical or mental health issue.

For others, you might be shocked that doctors would prescribe something like that for someone so young.

But that’s the reality of the size of the challenge Jude was facing every day, even though he was only 6.

If a child’s problems were physical then there would be no hesitation in prescribing what they need to live a better life.

If he has a chemical imbalance causing such high anxiety, leading to frequent meltdowns, shouldn’t we do everything we can to try and change that?

Yet when it comes to mental health, the subject is still largely taboo, and one that many know very little about.

After more than a year or tests, observations, meetings with specialists, and my own research, we decided to give the medication a try.

We knew all of the possible side effects (increased appetite, headaches, stomach problems, drowsiness, increased anxiety) but decided it was worth the risk if the upside was a big reduction in anxiety, and in turn his self-harming.

Starting on the smallest dose, and monitored regularly by the mental health team, we gave it a try.

Fast forward 4 years and my son is a completely different boy than he was back then.

The medication seems to have just lowered his anxiety to a state that he’s more comfortable every day.

He starts off at a lower point, is more open to the world around him, and not liable to overload at the slightest noise or disruption to his sense of calm.

There’s been no drowsiness or drooling, the images that first entered my mind when I thought of medication.

It’s not been a miracle cure.

There have been a number of changes that we’ve implemented alongside it to also help in reducing his anxiety, but overall the difference is amazing.

He’s still on that initial low dose (we’ve tried weaning him off but the old behaviours returned) and no visible side effects that are of any concern to the doctors so far.

As fate would have it, we’re now about to go through the same process with his brother, Tommy, who is nearly 8.

Although completely different, Tommy has also reached a sage where he’s really struggling to regulate, to control his emotions.

He’s currently being assessed for ADHD and has regular aggressive and destructive meltdowns.

Medication might be the solution, or it might not. But it is an option that is being discussed. Having been there before it’s no longer a shock.

If all the reports come back with it as a recommendation, and after researching it still seems a good option, then we will give it a trial.

We owe it to him to do everything we can to make life more stable, more enjoyable.

Medication isn’t the right solution for everyone.

I wish that it wasn’t the solution that Jude (and possibly Tommy) needed, but it appears they do.

I just hope that we can talk about these things more openly, that the stigma is taken away from medication for mental health reasons.

So that if one day this is an option for your child, it’s not as scary as it first seems, and you can make the best decision you can for them

Love Does

What bestows on me the bravery to boldly represent you, speaking my mind, rooted in heart, to the professionals we partner with to make your weaknesses stronger and your strengths stronger yet?

Love does.

What pulls my grin from ear to ear, laughter erupting and heart overflowing with delight in the hilarity of that humor of yours?

Love does.

What causes the charting of new waters unknown and the repetitive visiting of familiar waters teeming with hardship to be more than worth it?

Love does.

What causes my soul to swell when I gaze at your sleeping face, completely captivated by the innocence and wonderful wholeness of who you are?

Love does.

What raises me from the warmth of my bed, ending my rest within the wee hours that I may rush to your side to outpour comfort and relief?

Love does.

What replaces my despair with rejoicing and hope despite the weight I carry as I care for you?

Love does.

What reaches within me to bring forth the roar of advocacy, overpowering my fear when I face the giants of injustice, discrimination, and cruelty of a world so blind?

Love does.

What brings me to my knees, ache crushing me from within as I witness the weariness you wear as you fight a battle unfair?

Love does.

What gives me the strength to rise after another sleepless night, downing caffeine and dancing into caregiver routines and appointments doused with mercies enough for today?

Love does.

What puffs my chest full of the greatest of pride as I watch you be all you were told you never would?

Love does.

What erupts in my heart and springs forth from my soul as I hold you near, mesmerized by your trust as you melt into the embrace of my motherhood?

Love does.

What causes me to be angered by the chosen ignorance of those who speak and act through the belief that your worth is directly correlated to your diagnosis?

Love does.

What makes me bolder yet softer, braver yet kinder, louder yet gentler, more informed, more present, and more full of joy as I daily encounter your miraculous existence?

Love does.

To my children who happen to have a diagnosis: I know you hear the comments of those around us, asking me why or how I do it all.

If only they knew that even on the hardest days, I am equipped, encouraged, and empowered by a force whose power cannot be understood:


My love for you.

Your love for me.

God’s love for us.

A Child First, A Disabled Child Second

What do you see when you first meet a child with additional needs or a disability?

That may, of course, depend on whether their additional needs or disabilities are visible; it may be ‘hidden’ as so many conditions are.

But even then, we would be missing the point; what we should see first is the child, a unique, wonderful, amazing child.

All too often, when someone is asking me for help regarding a child with additional needs or disabilities, the starting point is ‘problem-solving’, centered around the child’s condition.

“I’ve got an Autistic child in my group, how can I include him?”, or “I’ve got a Dyslexic teenager in my class who is struggling when we read…”

It’s easy to see how this narrative can form, it comes from a place where we’re trying to get a child that doesn’t fit our model of children’s or youth work to somehow adapt, and the main thing that’s preventing that happening is their disability.

But surely there is a better way of looking at this?

A starting point that isn’t ‘problem-focused’ but is ‘child focused’?  That looks at what a fabulous, individual, gifted, child this is first, that starts to build a more positive narrative about how we can adapt to meet their needs?

Our son, James, is 16-years-old, is loving and affectionate, has an infectious belly laugh, loves Minions, the colour yellow, PlayDoh, and trips out to the farm shop or café.

He’s brilliant at jigsaws and can do 300-piece jigsaws upside down, just by the shapes.  James is a good-looking lad (I know, I’m biased!) who is loved by everyone who meets him.

He is also Autistic and has Learning Difficulties and Epilepsy, so needs things adapted so that he can access them and be included.

The folk at Sheffield City Council’s Children’s Team have created a website called SheffKids which is a brilliant resource full of really helpful support tools.

One of these is their range of one-page-profiles, a resource to help anyone working with children or young people to get to know them better.

These one-page-profiles ask three key things, and the order and priority given to them are really important:

What do people like and admire about me?

This is such a great place to start.  It sets the right tone from the outset and creates a positive narrative about the child or young person, a ‘child-centered’ narrative rather than a ‘problem centered’ one.

By identifying and listing all of the positive attributes of the child we see them more fully, we see the things about them that are fulfilling, the positive things that them being a part of our group bring and what we would all miss if they weren’t there.

It is affirming and constructive, completely changing the way we continue to think about and respond to them.

What makes me happy?

Again, this is really important to know.  If we get to know what makes a child or young person happy then we can get to know them better through those things.

We see them more broadly, as an animal lover, or someone who likes to play with Playdoh and enjoys exploring the sense of touch, as someone who likes technology.

We can also use those things to help us enable them to take part in the group activities, utilizing their favourite things to engage them and keep them interested and focused

How I want to be supported.

This is the final section, and the words used are deliberate and helpful.

Instead of the typical ‘Does your child have special/addition needs, please describe them here’ type of question that we still see on far too many registration forms, this is different.

Firstly, it isn’t a question at all, it’s a statement; it’s person-centered “How I want to be supported”.

Secondly, it talks about what that support needs to look like; that puts the emphasis right back on us to provide that support, for us to adapt rather than the child.

That’s the right way around!

Using a resource like these one-page-profiles helps us to get the order right when we’re thinking about a child or young person; to prioritise them, not us.

It guides our thinking to the positive attributes for that child, which may or may not have anything at all to do with their disability.

It leads us to consider the things that make them happy, again whether this is connected to their disability or not.

And it helps us to understand the things we can do to support them; I’ve recommended using these simple resources for all children and young people, there are loads of different styles, as we can find out so much more about every child that we work with through them.

Perhaps using resources like this will help change the narrative for children and young people; will help us to understand them as individuals, not labels; will change the perception of children and young people with additional needs or disabilities from being a ‘problem to solve’ to being ‘a child to serve’.

When we see each child as a child first, and a disabled child second, then we see them the right way around!


We need a Plan B, C, and maybe D

The other week, we had a power cut. Nothing overly exciting, it seemed that our half of the road was affected and we were without electricity for about an hour.

We lit some candles, had a chat (no wi-fi so no Facebooking!), and before we knew it we were back up and running.

Must have just been a blip and I thought no more of it.

Until a few days later, when the power went off again, but this time it stayed off for ages.

No biggie that we weren’t able to put the lights on as it was the middle of the day.

Not a major problem that we couldn’t boil the kettle for a coffee (although many of you will understand that caffeine can often be considered as critical!).

What was a problem was Heidi’s equipment.

You see Heidi comes with extras. Extras that need power! She has a tracheostomy so needs suction, sometimes going through 100 catheters a day, so her suction machine is constantly on charge.

She is gastrostomy fed and has a feeding pump, which needs charging up (now we could do gravity feeds, so no power needed, but I’m keeping it on the list for the purpose of this blog!).

She is non-mobile and getting big, so we have a lift, that is electric – although it will bring you safely down if the power goes off whilst you are up in it, it’s a one-trip only ticket.

So, we sat, huddled around a gas stove and some tea lights to keep warm (only kidding, it wasn’t that bad), and decided we needed a plan.

We had a battery pack as a Plan B for the suction machine, but what happened if that ran out?

We could charge it up in the car… I had visions of driving around randomly for hours just so we could suction when needed!

Of course, this all sounds dramatic – I get that we were only a short distance from people who did have electricity, in fact, our hospital isn’t far away at all so in a real emergency we could always go there, but it made me think just how much we, like other families in our situation, have to plan.

If we go out, and I forget something for myself, then generally I can either manage without it or nip to a shop to buy it.

If Heidi needs something though it’s completely different (unless it’s the basics like nappies, but even that will become more challenging as she gets bigger).

As a result of this, we pack like we are leaving the country for a month – we have spares, and our spares have spares… but where do you draw the line?

You can’t plan for every eventuality, but if you’re like me you can certainly try!

Oh and just to reassure you – the power did come back on the same day, disappointingly just before we were about to order our “emergency” takeaway!