I saw them hanging on the rack in front of me.

Peppa Pig pyjamas.

Pink and sparkly.

I wanted to get them for Louisa.

She needed new pyjamas and she loves Peppa Pig.

I looked down for her size carefully, searching through the rows and rows of pyjamas.

I couldn’t see her size.

It wasn’t there.

I looked up…

‘Children’s clothes up to 7 years’ read the sign.

So no Age 8 Peppa Pig pyjamas.

I took a deep breath.

I’d forgotten.

I’d forgotten that most eight year old girls do not like Peppa Pig anymore.

What are they into? I’m not sure I really know.

Because I have a wonderful eight year old who isn’t like most other eight year olds.

I took another deep breath.

But this time, I didn’t get upset. I didn’t go back to my car and sob into my hands.

I’ve done that before, but this time I didn’t do that.

Because…

It doesn’t hurt like it did.

Because now I remind myself to only focus on what Louisa likes and what brings her joy. To stop getting sad about the things that really don’t matter.

I’ve learnt what to be sad about.

Sure there is a sting – the sting doesn’t go away – but that sting eases much quicker than it did.

I’ve learnt that Louisa’s happiness is the only thing that matters. Not my made up expectations from a life I naively envisioned before I was blessed with beautiful her.

And yes, I’m annoyed that those particular Peppa Pig pyjamas didn’t go up to her size. She would have liked them. She would have looked really sweet in them.

But no, I’m not annoyed that Louisa still likes Peppa Pig.

I’m grateful for Peppa.

That pig brings my daughter joy every single day.

And that’s all I care about.

And that’s all I want.

Happiness.

So, I’m just reminding you that with some things, time really does heal.

Time does teach you what to care about, what to shed your tears over.

For me, there have been so many wasted tears over the years.

And I’m telling you, from experience, don’t waste your tears over Peppa.

And this time I’m especially grateful that I didn’t because my mum (always on a mission to get her girls what they want) found Louisa some Peppa Pig pyjamas in Age 8.

Louisa is happily wearing them tonight.

Life is good.

And my daughter is wonderful.

So please remember…

It’s ok to cry. I promise you I’ve done a lot of that.

But don’t waste your tears.

You will always find a way, you will always find your happy.

And…..

Age 8 Peppa Pig pyjamas exist.

It all started with milk.

Four pints of it spilled on the kitchen floor – to be exact.

You know that saying, ‘Don’t cry over spilt milk’?

Well, I don’t think that counts for four pints. Because, for me, there felt like there were a lot of reasons for crying. And cry I did. Repeatedly throughout the day.

It was the tipping point. I can’t lie. The point, one and a half weeks into the summer holidays, where I fell to my knees and felt beyond broken.

It’s just milk – but of course it’s never just milk.

It’s a build up of stress and exhaustion. A build up of over thinking, questioning ‘How am I going to do this forever?’

It’s feeling so disappointed in myself. Angry at myself for letting it happen. Then feeling awful for hating this life as much as I did in that moment.

But mopping up four pints of milk can make you feel defeated. Four pints of milk seeping behind the fridge and washing machine, under the ‘stick on’ floor tiles felt very representative of how out of control I felt. A complete mess.

So here I am, an afternoon cleaning later, an argument with my husband later, an ‘I hate my life!’ meltdown and a pointless drive around to cool off later, a pulling up the kitchen floor later – reminding you – if you’ve had a moment (or two or three etc) that you are not alone.

This is hard. Parenting a child with severe and profound physical and learning disabilities is hard. The spilled milk, the poo, the cleaning, the feeding, the lifting, the bathing, the worrying, the trying to keep them comfortable and happy – you know, just the regular parenting stuff times a billion. This. Is. Hard.

You can hate it, sometimes. You’re allowed.

You can be angry, sometimes. You’re allowed.

You can shout, sometimes. You’re allowed.

You didn’t think this is where you’d be. But here you are. And it’s tough.

Yes, there are BEAUTIFUL moments within the spilled milk. Those moments will keep you going. Those moments are everything. But they don’t always override the spilt milk.

Some days there are no bright sides, it’s just milk – four pints of it – everywhere on your kitchen floor.

I just hope you, like me, have someone kind to help you clean it up.

Keep going, tomorrow is a new day.

(And I need to go and buy some more milk.)

Last week I was organising my bedside drawers when I came across this note.

It’s a couple of years old. Maybe three.

Fred had written it to me and slipped it under my bedroom door (with a sensory book to ‘fleel’) when I was having a really tough time. I remember it like it was yesterday – I had been crying under the duvet in my bed. I thought I was hiding it from the world. But I couldn’t hide it from him.

My lovely and sensitive boy.

I’d kept this note folded up in my drawer ever since – so it hadn’t been read for a while. But, at that moment as I pulled it out of the drawer, I was confronted by the message again. I sat down and read his words;

Dear Mummy, I just want you to feel good. Feel this book. Love from Fred x x x

I imagined him sitting on his bedroom floor with his felt tipped pens sprawled across the carpet writing these words on paper taken from the printer. Little Fred, who should have been innocently drawing castles, princesses, dragons and knights – was instead writing a note to his desperately sad mummy to try and cheer her up. I felt a deep sense of sadness and guilt.

Sad that I’d been so depressed.

Guilty that my little boy had been a witness to that.

It’s very hard for me to be open about how difficult I found it when we first had Louisa and how difficult I still find things today. Physically and emotionally. It’s hard to admit this and, let’s be honest, acknowledging grief in relation to having a disabled child is often frowned upon, as though by admitting our grief we are devaluing our child.

But for me this isn’t the case, my grief is wrapped up in lots of different factors. I will forever find it difficult to accept that the world isn’t designed for people like Louisa and that her life is filled with challenges. I will forever grieve that there are opportunities she will never be able to have. I will always feel the unjustness. I will always find it unfair. I don’t think any mother can see their child struggle and not feel sad, angry and helpless.

Many of us who feel this grief keep quiet for fear that admitting it appears to somehow endorse the idea that we would want our child a different way. That somehow their disability makes them undesirable. This isn’t true – all I want is my child to be happy. I would do anything to take away all the hard things in Louisa’s life. I would take away all the pain and all the hurt. I would give her a voice that she could shout for herself. That she could have independence. I do not believe that is disrespectful to her, I believe it’s love.

But my grief (I have discovered) has had little to do with Louisa’s disability but rather my own expectations for myself, the loss of the Michaela that I used to be and the life I thought I was going to have. The loss of the Michaela I (had) thought I liked and the life I (had) thought I wanted.

Instead, I have changed. My life has changed. And my honest truth is that I have been completely overwhelmed and I have felt like a complete failure in how I have managed things.

In the past I have been so sad.

Sad that Louisa has struggled and sad that I haven’t been able to fix it for her.

Sad that I don’t know more, that I haven’t got the capacity in me to research more, fight more, learn more.

Sad that I felt like a useless mother, sad that I felt like a rubbish wife.

Sad that ‘normal’ things are difficult to do for our family. Sad that we always have to adapt to fit in, that we’ve had to change our life plans.

Sad that we have become so isolated, that I’ve felt like we are a burden, that I’ve lost relationships with friends and family and the ones that I do still have I barely see. That I don’t have the capacity to be the friend I want to be for them.

Sad that my boys see things they shouldn’t have to see.

Sad that I’ve been so tired and I haven’t always made the right calls. That I’ve let myself go.

You name it, I’ve felt sad about it.

Being the mother of a severely disabled child was thrown on me, I didn’t have time to adjust and adapt. I didn’t have time to find my feet. I was (still am) learning on the job. And the weight of parenting a disabled child will always be more. That’s just the way it is, I get that now. I beat myself up about it less.

As I’ve grown into this new kind of motherhood, as I weather many of the storms time and time again, my confidence continues to grow and I’ve slowly started to find myself and my voice. I’m learning that I no longer want to hide in the shadows thinking that everyone’s opinion is bigger and better than mine. I’ve stopped listening to people who haven’t walked my path give me advice. It’s well meaning but they just don’t get it.

I’ve even realised that sometimes even the professionals are unsure what to do in regards to Louisa’s care. That we are all muddling through trying to find solutions to problems that this rare genetic mutation has thrown us. Instead I’ve learnt to work with them – offering my advice and opinions because I know Louisa the best.

My life experiences are giving me an insight into a whole new world and are opening my eyes to something more beautiful than anything I have ever experienced before.

I have realised that I don’t need to grieve the loss of the old Michaela, but rather find pride in the new and improved one, the one who is learning to advocate, who is not useless or rubbish, who just wants to make my little section of the world a better place for my daughter, my family and the children and families who will inevitably come after us.

Fred’s note is heartbreaking, but it now acts as my inspiration to see the joy. It acts as a reminder to fight against all the heavy stuff that weights me down for Fred, for Louisa, for Albie, for David AND for me.

I want my children to know that life doesn’t have to be perfect to be wonderful. That difficult things happen, but how you learn and grow from these things is what truly gives you that precious strength of character that will do good in the world.

And what my life experience has made me realise is; that happiness has always been here, I had just stopped allowing it to be part of my life. And to not let this happen again.

That being together, that loving one another, supporting and uplifting each other will always make us ‘fleel good’.

For better, for worse,
for richer, for poorer,
in sickness and in health,
to love and to cherish,
till death us do part.

Nearly ten years ago my husband David and I said these vows to each other. We were young and naive but so in love.

We didn’t have a home of our own or a plan. We’d only just started our careers.

We moved into our new home after our honeymoon. We had to go shopping for our furnishings – borrow a TV stand and dining table – everything was a bit bare and makeshift. We didn’t know our own style or what we really liked – we needed to grow into that. We didn’t have things like an ironing board or cheese grater, we’d never paid a window cleaner to clean our windows. We didn’t know how to descale a kettle or how you can save money if you have a Tesco Clubcard.

All we knew was that we loved each other and wanted to spend the rest of our lives together.

That’s all we needed to know.

I look back and love our innocence. Just two people in love. It wasn’t complicated.

But then life had other plans and we quickly found out we had so much to learn.

Because we didn’t know that we would have a severely disabled child. We didn’t know that the lives we presumed we’d have together would completely change. We didn’t know the pressure there would be on our marriage as we endured hospital appointments, operations, stays….. heartache. We didn’t know the pressure we would endure as our lives became devoted to caring.

Caring for the most precious little girl. The love of our lives. But caring nonetheless.

Parents of children with disabilities go through so much. It is so much more than those with typical children. I cannot sugarcoat it. It’s true. If you know, you know.

Like many people, David and I like to be private about our marriage – but here I am sharing our experience because the strain on a marriage isn’t often spoken about openly in relation to caring for a disabled or medically complex child. This is another thing parents of disabled children hide away from the world. Divorce rates in these parents are much higher than those with typical children. And when you are in the midst of all of this heavy stuff – you feel so alone. Like you’re the only couple going through this pain. The only couple living without sleep. The only couple arguing that someone needs to wash up the syringes. The only couple having deep conversations about how you are going to care for your child in old age. Or if you are going to lose your child.

But this isn’t true. You are not the only couple. These are feelings and conversations most parents of disabled children are having – along with so much more. And it’s a shame we all feel so uncomfortable sharing how our child’s disability has affected our relationships. Like it’s a dirty secret we shouldn’t admit.

If you are going through a difficult time in your marriage or relationship as you try and balance the anxiety and weight of caring – please know you are not alone.

The early days for us were tough. Really tough. We both went through a grieving process – but at different times. This put endless pressure on our relationship.

Initially I became obsessed with Louisa’s health and development. Continuously telling David something was wrong. Him, in – what I felt like was – complete denial. Me wondering if I was going mad.

Then the doctors started to agree. And I saw David’s denial slowly edge away. But – forever the optimist- he never looked too far down the road, never over analysed results or conversations with specialists. He trusted them. He didn’t need any more information than what they gave us.

I – on the other hand – found myself in a state of pessimism. Convinced Louisa was dying. Analysing every single result, every single conversation with the specialists. Googling all day long.

It blew my mind how we’d be in the same meeting, listen to the same words but hear completely different information. Our opposite personalities forever shining through.

Our situation was very unique. We’d just moved overseas – we’d only been in Canada for six weeks before Louisa was born. David, my husband, had started a new job, I had left my family and my job in the UK and we were in the process of trying to start this new life. It was just us and a two year old Fred.

Then our lovely Louisa joined us.

Everything felt pretty good. Everything felt pretty exciting.

We had this new life, new country, new house, new job, new friends….. new baby.

But I came to realise that having a child with medical needs did not fit into this new existence. The pressure of David’s new job and the stressful and difficult working environment he was surrounded by was intense. That was a lot on its own. He needed to focus on work – we didn’t have a choice – so I needed to focus on the children. We muddled through, but then medical things started to crop up more and more.

After months of tests and visits, I can remember the day we sat in the paediatrician’s office in a small, sleepy town in Alberta – completely alien to the life we’d left in London – and I asked Louisa’s paediatrician, a tall, older man with a kind face and grey hair, bluntly,

“Do you think Louisa is disabled?”

He looked at me, paused, looked at David.

“Yes,” he said calmly, “I think Louisa has a significant and severe disability.”

Silence.

David and I didn’t talk from that moment as we finished the meeting, jumped in the car and sped back to our house as David had to get back into the office – he wasn’t supposed to have been at that appointment and would work late to make up the time.

We didn’t talk. We gave each other a quick kiss, he gently kissed Louisa’s forehead as she slept peacefully in her car seat. Then he rushed off.

Silence.

I cried all evening. ‘A significant and severe disability’. Those words rung over and over in my head. My heart felt like it was physically breaking. I’d never felt pain like it. I put Louisa and Fred to bed. I cried some more. By the time David returned home late, I had fallen asleep, my pillow soaking wet from my never ending tears.

We didn’t speak about it.

Silence.

The silence was deafening.

It was just too painful.

We couldn’t find the words.

Silence.

When we started genetic testing for Louisa, my obsession with finding out what condition she had became intense.

There is a charity called ‘Unique’ which provides information about rare genetic conditions. They have rare chromosome guides – basically information booklets discussing the symptoms of specific chromosome and gene disorders. Each booklet goes through the features of the genetic condition, how it occurred, the outlook….. as much information as they have been able to gather. Some of these guides are thirty to forty to fifty pages long of scientific information and photos.

There are 287 information guides.

I read every single one.

Every. Single. One.

I made a list of the symptoms and features that fitted with Louisa’s.

Every night I took my pen and paper and read a new information guide and made a (not so) short list of the genetic conditions I thought Louisa could have. The list was long of potential syndromes.

Every night David would tell me to stop reading, to go to sleep. But I couldn’t. He didn’t read one. Only – seemingly reluctantly – he would sometimes listen to me read the ones out loud that I thought fitted Louisa.

I needed to know what was going on with my baby. I couldn’t understand -at the time – why David wouldn’t help me research. From the light of my laptop I’d look at him sleeping beside me and hate him for not wanting to help me go through the information. For being able to sleep when my mind was always racing. Thinking he didn’t care. Feeling like he wasn’t supporting me in my need to find out what was happening to Louisa. I understand now – he was dealing with it in his own way, a little slower, a little calmer. Not wrongly, just different.

But I was exhausted with what I felt like was his dismissal of all the scary things that were happening with Louisa. I now know that this way helped him survive the pressures of his job and his worry for Louisa. Whereas – in contrast- I lived in an unhealthy obsession trying to find answers for a long time. I thought it helped me focus my attention and made me feel like I was being proactive. But it was unsustainable. Our different responses didn’t connect at the same time. We were on our own individual survival modes.

If this is you, support each other through your different stages of grief. Don’t think you have to feel the same things at the same time. Accept your different experiences. I truly believe that over time you start to reconnect – if you just show each other acceptance and kindness.

Because, the truth is, David balanced me out. I was doing enough research for the both of us. He didn’t need to spend the hours I did on reading those booklets. As much as I didn’t see it at the time, I needed him to be the opposite of me. I needed him to be more composed, to have a more measured approach. Because I was going down a rabbit hole that wasn’t helping anyone. I was spiralling.

Yet, I also balanced him. He was often accepting of what he was told, he needed me to help him see that it was our duty to question things, that there were answers and fights we needed to have. That we needed to challenge some of the doctors to ensure Louisa was given the best treatment and services available.

We were at two extremes – maybe it shouldn’t have been like that – yet somehow it brought us somewhere in the middle. It allowed us to carry on. It allowed us to do simple things. It allowed us to still make plans and go on holiday, to still make new friends, to still laugh and enjoy things. It meant Louisa got everything she needed. It allowed us to live.

In the first meeting with Louisa’s geneticist I handed him my list of possible genetic conditions that I thought Louisa fitted. He looked at it and gave me a knowing smile. Kind. He explained to me how they would do Whole Exome Sequencing to see if they could find the genetic cause for Louisa’s disability. He thanked me for my notes (he probably threw them straight in the bin – I was that annoying ‘google geneticist’!) but he didn’t make me feel silly.

We just needed to wait for the results.

I could talk forever about the struggles of the early days. The first two years of Louisa’s life were hard in so many ways including the toll it took on our marriage.

But the love was always there. And on the days that it wasn’t, it always came back quickly. The laughter often found us – usually at inappropriate moments which made us laugh even more.

We sometimes hated each other but we always loved each other. I wish I had appreciated David’s devotion to us in those early days. I didn’t always see how he’d close down my laptop, put my notes safely on the dresser and tuck me up in bed as I fell asleep whilst doing my research. I didn’t see how he held it together for me yet cried in the shower. How he stood tall and supported me as I wept. I didn’t see how he’d go back into work after devastating meetings with specialists, put his work face on and work so hard to get his job done to the best of his ability. How he didn’t let anyone down. How he continuously provided for us and didn’t crumble under the stress. And there was a lot of stress. How his love and devotion to us meant we were always at the forefront of everything he did.

The early days I just saw me, I just saw my pain and my frustration.

Each year that has passed since I have fallen more and more in love with the man I get to call my husband. The man who has stuck by me through my darkest times. The man who has held me up as I’ve screamed about how our life isn’t fair. Who hasn’t judged me.

He is my world. My best friend. He is the only other person in this universe who knows what it is like to be Louisa’s parent. We get to share this beautiful honour. And he is the only other person who truly knows the love, the heartache and the fear.

We were two regular people, two regular parents who were thrown into a world that we didn’t understand. It was just us. It was scary. It’s still continues to scare us. It was a lot. It still continues to be a lot. These pressures are not easy.

But together we have always been better.

Our love story isn’t glamorous, but our love story is made up of bravery and devotion to each other. It’s just about love in its purest form. It’s not for show. Our lives are complicated but our love isn’t.

If you are in the scary early days. Give your partner a hug. Talk. Don’t let silence rule. Be kind to each other. It’s unrealistic for me to tell you to spend more time together and to go on dates – you’re unlikely to have the energy or resources to make that happen right now – but try to remember that little things are the big things – that cup of tea, that hand squeeze, that cuddle when you need it most. Don’t let resentment build. Remember you are a team, you are working together. Remember that this precious child of yours is loved by you both. Don’t give up on each other.

Better days are coming.

And love always wins.

I’ve been wanting to change my blog name for a while.

I started this blog in January 2020. We’d moved back to the UK from Canada where Louisa had been born three years previously. I wrote a few posts just describing certain feelings I’d felt over the years.

My plan was to upload new blogs regularly. But life got in the way. Covid happened. Louisa experienced her toughest time and things got pretty dark for her, for me and for our family, Then we got blessed with another baby and Albert came thundering into our lives, bringing with him so much joy and light – but even less spare time. And so, this blog became something I picked up less and less. Hardly at all.

But here I am three years later in February 2023 – wanting to pick it up again. Embracing my own time line and now wanting to share more of our story. And to do it a bit more regularly. Wanting to say the things I’ve held back on in the past for fear that my honesty isn’t inspiring. I realise now that it doesn’t always need to be.

Today, I am able to write from six years of experience – which includes a whole lot of pain, rage, sadness, joy, excitement, friendship, love and wonder.

But one key thing to re starting the blog and saying goodbye to ‘A Special Kind of Normal’ is – the name. There are many reasons why I feel it is time to change it. Fundamentally, I have realised that the disabled community do not like the term ‘special needs’ when referring to disability. I think it’s important for me to listen to that.

But also;

Being ‘normal’ isn’t the goal anymore.

When I created this blog, ‘normal’ was the goal. I yearned for – what I considered – a regular life. For a regular home with my husband and two children, a 9-5 job and maybe two holidays a year. Nothing fancy. But perfect for us.

What I didn’t want was the world that I’d found myself in – the world of an extremely rare genetic mutation resulting in my beautiful daughter being severely disabled. I didn’t want the ignorance, the appointments, the therapies, the constant battle for services, the lack of sleep, the medications, the overloading of information or sometimes the panic and silence of there being no information at all. Ultimately….. I didn’t want the fear. I didn’t want extraordinary. I didn’t want lots of money or lots of materialistic things. I just wanted normal. I yearned for it because the idea of it was so much more appealing than the world of disability I had found myself in. I didn’t want this life.

But it’s funny how life experiences change you.

As time has progressed, I have evolved. I no longer see normality as the goal, I no longer yearn for the life I so desperately grieved for. Normality wasn’t on my cards and I’ve realised that I don’t want it to be anymore. Disability isn’t bad – and what is normal anyway?

Now by no means am I saying that I’m completely happy or satisfied with where I am now. Or that my grief is cured. It will never be fixed. It hits me at the most random moments and the pain hurts now just as much as it did then. But the moments are much fewer and far between. The pain lasts for a shorter period of time. Or maybe I’m just harder to it nowadays. I don’t really know.

Because as long as Louisa struggles I will never find completeness or pure happiness. I know that. If I could change every difficult thing for her, I would in an instant. If I could give her every opportunity she wanted, I would in an instant. I will never stop wishing things were different for her. But, when I started this blog, I truly believed that if Louisa’s disability was taken away then life would be better. In fact, without her disability I truly believed our lives would be perfect. I now realise that her genetic make up is part of her, I only know and love Louisa the way she is – if that was taken away, she’d be gone. And life would be so imperfect and so so dark. It’s not something I can even allow myself to imagine. I don’t want that.

I just want Louisa. She is my wonder. She is my heart. And as much as I know so many people cringe when people say things like this – I truly believe she is the reason I am on this Earth. She is my world. And she teaches me so much every single day.

Louisa has taught me to throw normal in the bin. That we were always destining for something else. Our life is still not extraordinary, it’s still not luxurious or fancy. There’s nothing special about it. But it’s our little niche. It’s our little story. Just like you have your life and your story. But in my life, right now, Louisa is my protagonist. And rare is our journey.

We don’t know what the future holds for Louisa. Rare means there is no crystal ball. Rare means there is so much uncertainty and living with the unknown eats away at me most of the time. Rare takes a lot of inner strength. Rare is not easy.

But we also have relatable moments in this rare life. I’m still a mother, I’m still a wife, a daughter, a sister, a friend. I’m still like you. Louisa is still a beautiful little six year old girl. I hope you can see that from the words I write.

If my words can help anyone going through something similar, then I need to share them. I hope you are able to support me in getting my words out there. Please share and like my posts (if you actually like them!).

And here’s a little message to my darling Louisa. Thank you for helping me find my voice as I’ve searched for yours. You are my wonder. My absolute wonder. I love you. Always have and always will. Thank you for choosing me.

So here is to new beginnings.

He said it.

We were laying on the floor, rolling around being silly together. My little one year old boy. My healing baby.

He was giggling. I was giggling, He gave me a cuddle and then…..

He said it.

“Luff Yoo.”

The words shot through me. My body absorbed each syllable. My soul instantly warmed.

He really said it.

“Luff Yoo.”

I paused and let it sink in.

Rejoicing in the moment.

A moment I thought I’d been waiting for.

A moment I thought I’d been missing.

“Luff Yoo.”

In that brief moment, in my exhilaration of hearing those words, I felt my mind naturally divert;

She’s never told me that she loves me.

There was a sinking feeling.

Albie kissed me on the lips and we carried on playing. The pause was brief, but – to me – the complex field of emotions I experienced in that tiny moment, meant it felt like forever.

“I love you too,” I smiled and gave him the biggest squeeze.

Later that evening, I reflected. I reflected on my joy but also my sadness.

I often feel frustrated with myself that – as much as I try to resist it – most firsts for Albie, have always somehow been overshadowed by my deep mourning for those moments that we haven’t had with Louisa. Even though I know we’ve had just as special other moments.

I often feel disappointed in myself that I can’t just separate the two emotions. That I can’t let go of the ‘what ifs’. That I can’t let go of the grief.

But yet, this time it felt different. I quickly reminded myself:

He said the words. But he has been telling me he loves me from the moment he was born.

She’s never said the words. But she has been telling me she loves me from the moment she was born.

And that’s it. That’s everything. She has told me she loves me. Of course she has.

My focus on language has been so intense over the years. I’ve been desperate to hear Louisa speak. My heart has broken as the few sounds she made slowly reduced and disappeared. I think the loss of noise – for me- has been one of the most painful parts of parenting Louisa.

We now have a hum. This hum describes her pain, her frustration and her upset. But her laugh describes her joy and her happiness. I love her laugh.

Truthfully, I don’t expect words in the future. I’ve come to accept that will probably never happen. I’ve grieved it. I continue to grieve it. I don’t need people to say it may happen because where I am now – I don’t care for words for Louisa, if that’s not her path I accept it. Just like I accept everything about her imperfect perfection.

Love doesn’t need words.

But I will always care for communication.

Communication is everything.

I hate when she can’t tell me what’s wrong. I panic that I have to put my trust in so many people because Louisa will never be able to explain to me if she has been mistreated.

Communication is everything.

But communication comes in so many forms. Spoken language is just one of those forms. We have a long way to go to try and find what works for Louisa. But it is a journey I want us to embrace. We will find her voice – it may just look and sound different to my original expectations. And that sums up this beautiful, unexpected life with our precious girl.

When Albie told me he loved me. I thought it would fill a hole. I thought it would heal the sadness of those lost words with Louisa. I had been yearning for those words for years.

But instead, it reminded me that Louisa tells me every single day that she loves me. Every look, every touch of my hand, every cuddle, every squeeze, every nuzzle of her head into my lap. The way she trusts me beyond all else.

Love doesn’t need words.

She. Tells. Me. Every. Single. Day.

And I hope she feels my love for her every single day too.

“Luff yooooo.”

Those words.

They mean everything….. but also nothing at all.

Louisa lost her first tooth.

My beautiful little girl lost her first little baby tooth.

And I cried.

I cried and cried and cried.

In that moment I didn’t know why the tears streamed heavily down my cheeks as I cuddled her tightly, congratulating a new milestone.

A milestone like so many other six year olds.

A glimpse into ‘normal’.

But yet, so far from it at the same time.

Because there was no tooth, my guess is that she swallowed it. There will be no creepy collection of baby teeth I have in my jewellery box like I do for Fred. There was no excitement about The Tooth Fairy coming and leaving behind a shiny one pound coin under her pillow.

There was only an oblivious Louisa….. and my tears.

And once again I felt a wave of pain. A wave of sadness and I guess the only way to describe it was…… I just felt a bit gutted.

Gutted that she didn’t understand and gutted that in that moment, I couldn’t find the magic.

Rightly or wrongly that’s how I felt. And the tears fell. They fell hard and fast. I squeezed her tightly and I cried these salty, emotion filled tears – trying to explain to her with my cuddle how much I loved her. Trying to remind myself that she is my perfect Louisa and my tears did not reflect how much she means to me and how wonderful she is.

And next came the guilt, feeling utterly disappointed in myself that a happy moment, a precious moment for Louisa that many children with rare genetic conditions may never have the privilege to reach – was turned into a ‘Michaela grief’ moment. How I could make something so ‘normal’ be turned into something I felt sad about?

And that realisation bothered me. It made me angry at myself. Disappointed in myself. It made me really reflect on where I am in this journey.

Because so often I feel like I’m doing well at being Louisa’s mum. It’s a privilege and one where nowadays the joy overrides any sadness. That life has adapted. I’ve grown in my knowledge, acceptance and understanding and we’ve found a happiness years ago I didn’t think was possible. We’ve settled and – although we haven’t found complete calmness – I have come to accept that calmness doesn’t really exist with a disabled child as there’s always something around the corner to throw a spanner in the works – in spite of that, we’ve found more peace…..

…… so why now? What brought all these tears?

It’s taken me some time to unpick – but I think I’m there.

The tears came because…

I’m scared.

I’m really scared.

I’m scared of Louisa growing up. I’m scared of what her life looks like as a older child, as a teenager, as an adult. The world isn’t as kind to disabled adults as it is to cute little girls with pink glasses. And I’m terrified. I’m terrified for my baby.

This lost tooth represented the future. The growing up. The unknown.

And whilst fearing the future, at the same time I’m also longing for it too – wanting to know if Louisa will stay healthy and praying she will always be with us.

My tears were filled with a combination of every emotion felt from the past, the present and the future. All rolled up into one.

The regular milestone caught up within a world of delayed and missed ones.

Over the past six years I’ve detached myself from the regular trajectory for Louisa on so many things – yet in that moment, with this tiny lost tooth, I was experiencing a normal thing. My mind was blown.

This life can be so complicated.

But I know I have had to give myself grace. I have to feel my feels. I have to forgive myself for my tears but also remind myself to hold them back from Louisa. She may not know why I’m crying, but I’m sure she knows when I’m sad. And she deserves to be shielded from that. I need to protect her. Because it’s not her, these emotions are mine. This grief is the baggage I carry. She is not heavy.

Last night, Fred, David and I wrote a little note to The Tooth Fairy explaining that Louisa lost her tooth but we couldn’t find it. We popped the note in Louisa’s Tooth Fairy bag and – to our amazement – this morning we found a bag of shiny, gold chocolate coins. A real bit of money means nothing to Louisa, but chocolate – she is all for chocolate! What a cheeky Tooth Fairy! We danced and jumped for joy and then Fred, Albie, Louisa and I all sat on her bed eating her treasure (that Louisa very kindly shared!).

“I can’t wait for you to lose your next tooth Louisa!” Fred smiled.

This world is messy. Sometimes the most seemingly simplistic things take the wind out of your sails. You fall to the floor. There are brief periods of time that feel like agony. But only for a moment. Then you get back up, dust yourself off and continue the ride.

Because there IS magic.

It just looks different.

Six.

Six years of loving you.

Six years of feeling so proud.

Six years of finding joy.

Six years of learning.

Six years of realising what is truly important in life.

Six years of laughter.

Six years of happy and sad tears.

Six years of holding you tight and never wanting to let go.

Six years of the highest highs and the lowest lows.

Six years of fun.

Six years of worry.

Six years of admiration.

Six years of strength.

Six years of meeting some of the most wonderful and caring people.

Six years of medical terminology.

Six years of researching.

Six years of Peppa Pig.

Six years of no sleep.

Six years of your beautiful smile.

Six years of cuddles.

Six years of giggles.

Six years of seeing you grow.

Six years of watching your sweet personality shine.

Six of the best years.

Six years of YOU.

Perfect YOU.

Louisa, you are the diamond of our lives, the heart of our family and pure joy.

We love every ounce of you.

Thank you for the past six years. It’s been a ride!

Six million more years with you would never be enough.

We love you.

Happy SIXTH Birthday beautiful girl.

“Sometimes I wonder what Louisa would be like if she wasn’t disabled.”

I looked at him, my seven year old son, as the words left his mouth. He was sitting at our small kitchen table doing his homework whilst I was unstacking the dishwasher. His words hung in the air and drowned out the din of the radio music in the background and the clinking of cutlery and dishes being put away. I absorbed what he had said.

I looked at him, innocently using his fingers to work out the next maths equation. He wasn’t looking up at me, as though he was too worried to see my reaction to his words. As though he hadn’t meant to say this out loud and if he kept his head down we could both ignore it.

I paused. I took a breath. I digested the enormity of this statement whilst also digesting the innocence of it too.

“I sometimes wonder that too,” I admitted. “What do you think would be different if Louisa wasn’t disabled?”

“Well…..” he looked up, his eyes locked with mine as though he had been eager to have this conversation with me for a while, relieved at my response. I wondered how long this had been on his mind, “Well, I think she’d have long hair because she wouldn’t pull it out when she is sad,” he said.

“I think you’re probably right, she might have longer hair. Maybe if she was able to tell us what was upsetting her she wouldn’t pull it out.”

“I don’t think she’d watch so much Peppa Pig,” he pondered. “I really don’t like Peppa Pig.”

I smiled, “Ha! Yes she might like other TV shows. I agree, I think Peppa is a really rude pig!”

He smiled back. Peppa Pig is just white noise to us all now, but some days it still drives us all a bit mad.

“But we wouldn’t know Ashleigh. We wouldn’t know Mia would we?” he kind of stated and asked this question all at the same time.

“Yeah I think you’re right, we probably wouldn’t have met them.” I agreed. Mia and Ashleigh are Louisa’s Personal Assistants, who are both very much part of our family now.

He smiled, looked back down at his homework book and carried on.

I stood there. Did I need to say more? Did I need to talk about how Louisa is perfect and that she wouldn’t be Louisa if we changed any part of her. That’s it’s ok to be disabled, disability is not the issue, it’s society that needs to change. That everything is fine and we shouldn’t wonder because it just is what it is. That we should be grateful that Louisa is in our family, just like everyone else. That we are lucky.

I didn’t say anything else. I left it there. He’d moved on and that brief conversation was over.

Recently disability has been at the forefront of everything in our family’s lives. Louisa’s needs are profound. The gap between her ability and that of a typical five year old is wide. Her ten month old baby brother currently says more and understands more. Disability cannot be ignored in our family as it is at the heart of most things we do. It cannot be the elephant in the room as it is part of every action, every decision that we make. It often dictates what we can and cannot do. That’s the reality. And where does Louisa’s seven year old brother fit into this?

When he was younger Louisa was just Louisa to him. His little sister. And she still is of course. But now he notices. He notices that she doesn’t speak with words, that she needs help with most things she does. That she is allowed to watch her iPad when he isn’t. That she doesn’t go to the same school and that she has lots of appointments. He knows the names of her medications and the professionals that work with her. He knows she is different from his friends’ sisters. He knows the humming that she makes often leads to a crisis. He knows that sometimes we can’t go to certain places with Louisa as she’ll get distressed, or if we do that we need to take another adult with us to help ensure Louisa is looked after and safe. He has learnt this through being in our family.

All of these things impact his life. Positively, negatively and everything else inbetween. That’s the reality. That’s the truth.

He is allowed to wonder. He is allowed to think how things could be different. Our lives are different with Louisa. Not better, not worse, just different. I cannot deny that simple yet complicated fact. Our lives and our family dynamic isn’t depicted in what he sees elsewhere, we haven’t seen TV programs with families like ours. Our lives are not ‘the norm’. Our lives are hard and easy and magical and unexciting and simple and wonderful and happy and sad all at the same time. These emotions are huge for me to understand, I can’t imagine how his little brain comprehends it all.

I want Fred to always feel comfortable with talking to me about all the good and difficult things. I want him to know it’s ok to sometimes wonder ‘what if’. A seven year old is allowed to have questions. But I’m desperate for him to be confident enough from our family love and understanding that he knows that all the disability noise around Louisa is only a tiny part of her. A small part of us. That she is so much more than any of her apparent ‘limitations’. This is just her. This is just us.

If she wasn’t disabled….. if I’m honest, I’ve thought about this lots of times. And I think that’s ok. I just haven’t said it out loud because what if someone thinks I don’t love Louisa? What if someone calls me out for being ableist and wrong? But, I’m glad he was able to say it to me, because there is nothing but innocence behind what he has wondered.

I couldn’t be more proud of my son. The boy who is asking questions and learning but also so accepting and loving. The little boy who really sees the only ‘problem’ being that of how annoying Peppa Pig is.

Why?

It’s just one word, but it asks a lot.

Why?

I think that probably everyone who is reading this blog has had a moment in their lives where they have felt something is unfair. Where they have asked ‘why me?’, ‘why us?’….. just….. ‘why?’

And although I know how lucky we are and how so many people in the world have a lot more hardship than us – which in turn makes me feel incredibly guilty for feeling like this – I still haven’t been able to stop myself asking ‘why?’. I’ve struggled with it. I’ve sometimes found myself consumed by it.

Why?

Why did our little embryo have this super rare genetic mutation?

Why does Louisa have to go through all of this?

Why does Louisa have to struggle?

Why is she in pain?

Why can’t I make it better?

Why can’t we do ‘normal’ things?

Why her?

Why our family?

Why?

It’s not fair.

Some days I find myself with a positive outlook. I like to think that there is a higher power out there that chose Louisa, that chose us. That the answer to this ‘why?’ is bigger than anything I could ever understand. That it is all good. That there is a greater purpose and I have to trust the journey we are on. I often get a lot of comfort from thinking like this.

Other days I feel pure anger. The ‘why?’ consumes me. I want to stamp my feet and scream. Sometimes I actually do that. Some days I hate the world and everything that makes Louisa’s life harder. I despise everything that causes her distress and pain. I’m bitter and full of hatred for all that is hard.

And as the years go on, I’m learning that I’m allowed to feel all of these emotions. I can be happy and sad in regards to the ‘why?’. They can coexist. I don’t have to be one way or the other. The journey I am on in raising the most beautiful little girl is fluid. That on the days when Louisa has a really hard time – and let’s be honest when she has a hard time so do I, albeit in a different, emotional way as I try to help her through it – I’m allowed to feel mad and sad. Being angry for her is ok – as long as I channel it productively. And that on the good days, I can feel grateful and blessed. One emotion doesn’t discount the other. They are all relevant. Everything I feel is valid.

I guess the most important thing I’ve had to remind myself of lately is that I will never find an answer to the ‘why?’. And even if I did, it wouldn’t actually make Louisa or me feel any better. It wouldn’t change the here and now. It wouldn’t change anything. It wouldn’t make Louisa’s day to day life easier. I’m learning that focusing on the ‘why her/ why us’ pity party I sometimes have with myself is meaningless and rather it is the way I react to the situation that really counts. By wasting time on the ‘why?’, by letting it consume me – it serves no purpose other than to make me bitter.

I’ve also realised that rather than only asking ‘why?’ when difficult things happen or when things don’t go to plan, it helps to think about the ‘why?’ when things are going well, when things are good, when things are great. For me, this puts life into a very different perspective. And perspective is something I know grounds me and reminds me how privileged I truly am.

I know I need to flip the ‘why?’.

Why?

Why do I have a roof over my head and a fridge full of food?

Why do I live in a safe environment where my children are protected?

Why does my daughter have access to an incredible school, free healthcare and people who love her and care for her?

Why does Louisa have equipment that improves her quality of life?

Flip the ‘why’.

In all honesty though, I know I can’t promise that I’m always able to flip it. It’s foolish to think that I am full of positivity and that I am able to quickly accept everything that comes our way. As much as I want to be that person, I’ve realised that I’m just not – and it’s during the difficult chapters the negative ‘why?’ has a tendency to stay with me.

On the really tough days, when sleep hasn’t happened, when we are worried about Louisa’s health or when Louisa is in crisis and I start wrestling with the ‘why?’, I now know I have a choice. By acknowledging it and choosing to only sit with the negative feelings for a short amount of time allows me to let go of the anger that used to consume me. Flip the ‘why?’.

I am choosing to acknowledge the reality but focus on the light, the love, the happiness and the joy that my life is filled with.

And that’s a much lovelier place to be.

I haven’t uploaded a blog post in a while. That doesn’t mean I haven’t had a lot to say, there are SO many things I could have written, so many things I’ve wanted to shout from the roof tops about – but none of it was ‘inspirational’ and none of it had a ‘happy ending’.

I think writing about situations in the aftermath provides a perspective you can’t see whilst you’re living through a traumatic time. However, what happens when the situation you are living is on going? You see, that’s where we are right now, we are in the midst of a challenging chapter that it appears might take longer to weather than other tough times we’ve experienced before. And I can’t find the perspective I desperately need to make this a ‘worthy’ blog post because I can’t find a ‘happy’ to this.

But, creating a blog full of inspirational stories and manifesting this kind of ‘inspiration porn’ is not what I want this blog to be about because it isn’t sustainable. I can’t pretend to you all that we don’t have tough times. Or that every tough time we go through has some sort of beautiful life lesson. And I don’t think I should wait for the tough times to pass before I write about them with a positive spin. It’s not honest. Yet, somehow I have found myself in this position because I’ve been worried to be honest about our hard. To openly share that our hard is so hard. I’m worried that by being honest I will receive pity. And I would HATE for people to pity our situation.

Do not pity us.

But the truth is – when your child is hurting and unhappy NOTHING in your life can fall into place. You cannot focus on anything else. Your world collapses under the pain, fear, worry, stress and strain. You NEED to make it better and when you can’t find the answers, you fall into the darkest hole of despair in your desperation to fix it for your precious child. You have to be strong for them, all you want to do is to make it better and that takes every part of your being, there isn’t much space for anything else. David and I feel like we haven’t been able to breathe as we’ve held our breath for so long trying to make things ok for our beautiful girl. It’s honestly been so hard to even string a sentence together, it’s been hard to keep in touch with people. It’s been hard to focus on anything else because our minds have only been able to focus on one thing. Louisa. Obviously we have to carry on, there’s no option not to. But we’d swap places with her in an instant. We’d do anything to make her happy and to make this world a less scary place for her.

We have been in a hole trying to get our child out of her turmoil for a while, trying to give her the tools to help her climb out and trying to protect her. Trying to make her happy and to ease her pain. Desperately trying to scramble up the sides of this hole holding her tightly but falling back down with a crash however hard we try and cling on.

Louisa has been hurting and we have had to manage some extremely concerning behaviours. It has been all consuming. It has been painful to live, painful to watch. But this isn’t about our perspective of her pain being difficult, this is about her. Fixing it for her. Helping her. It’s about somehow changing the environment we live in to give her the sense of calm and peace that she deserves.

Luckily we have a good team. Professionals, teachers and carers who genuinely care and who have been dedicated to bringing joy back into our precious little girl’s life. But she is a bit of a mystery and it requires a lot of detective work (and tests and new medications etc) and a lot of trial and error. It’s not an easy road to navigate. And there will always be mistakes along the way. There is no quick fix to make this all better for her. We need to learn Louisa. And as much as I hate to admit it, I’ve been finding it hard to read her. To know what’s wrong. And the frustration and failure I feel as her mother for not knowing how to help my gorgeous girl haunts me. I’ve got so much to learn. And I have to give myself grace that as much as I want to know everything now, it will take time to learn and improve. Unfortunately I don’t have magic powers and I’m learning on the job here.

But, over the past few months, we have all worked hard. Our beautiful Louisa has worked hard. And we believe we are starting to see an improvement to our situation. We are getting systems and routines in place to help. Her days are MUCH happier. Her happy dances are coming back. Her cuddles are coming back. Her distress is easing. And it brings me so much relief and joy to see and say that. And I hope that soon we will see the light at the end of this scary, dark and miserable tunnel. But I cannot lie and say it’s all ok now, because it clearly isn’t. We still have a long road to navigate.

So to all the SEN parents going through a difficult chapter, I feel the deep pain and desperation you are feeling. I know it feels like life can be so bloody cruel to our children. Keep fighting for them. Don’t let the hole swallow you up. Keep going. You have to. Don’t let your inexperience hold you back and make you feel useless and worthless as their parent. You are not those things. You may not feel like it, but it is YOU who will help change the narrative and make it better. Your child needs you to be strong and to find a way.

David and I have to trust ourselves that we are not and will not let Louisa down. We can’t. We won’t. Ever.

And to our precious Louisa. I’m sorry we have taken time to fix this for you. I’m sorry that we haven’t known the answers. Thank you for your patience whilst we learn. I promise daddy and mummy will not let a stone go unturned and we will always find a way to make it better. You are the centre of our universe. We wish we could take away all the scary, difficult and bad parts you have to go through – it isn’t fair – but please know we would never ever change you. Because YOU are perfect. You are the light of our lives and we love you. And, I promise, the sun will shine again.

There is a lot of grief that lives alongside being a special needs parent. Grief is something I am personally working my way through and something that I most likely will talk about in more detail another time. It is a very emotive and complex feeling that I live with.

As I’ve muddled through the past (nearly) four years as a special needs parent, I’ve realised that my grief will come and go. Some days, months, years I will sit a lot more comfortably with our life. And I will feel completely blessed and happy. Milestones for everyone else will come and go and instead of celebrating them, I know that I will celebrate other life blessings and achievements with Louisa. And they will be wonderful. And I also know that as long as she is happy and thriving in her own way I will not always care about any of the external noise in the world. The world really is too noisy sometimes. I’m starting to like that we are living life at a slower and quieter pace.

It’s taken some time, but I have learnt over the past few years that the inchstones we experience with Louisa are just as wonderful as the milestones. That there is so much beauty in seeing life from a different angle, a much less showy life. I love our life – warts and all. In all honesty, I don’t know if I would appreciate it like I do now if I hadn’t had Louisa showing me the way. And if I’ve learnt so much in such a short period of time- imagine how much more we have to learn from our beautiful girl in the future.

But I’ve also realised that there will be some chapters in our life that will always be harder. And that there will be chapters that will stop me in my tracks for a moment, to pause, to reflect, to cry and then to continue on with our lives embracing our special kind of normal.

But – if I’m being honest – I can already see some future triggers of grief that I know I need to prepare myself for. Of course I’d be lying if I didn’t say that sometimes I think about the things we probably won’t experience in the future and weep. I know that some of the big life events in everyone else’s lives will bring a little bit of sadness to mine. And although I know it won’t always feel as raw or as painful as it has done in the past or even how it hurts now, I can’t imagine these feelings will ever completely go away.

I acknowledge that.

However, aside from the big milestones I know will trigger my grief, I’ve recently had lots of surprising triggers that I wasn’t expecting. When I say triggers, I mean moments that bring my grief on harder. I guess being in lockdown and the isolation we have felt as a family with a disabled child has heightened my awareness and exposed me to these triggers.

And, as it turns out, other children turning four has been a big grief trigger for me.

You see, I remember being pregnant and having a few friends – and other people I followed on social media – also being pregnant. Now those children are turning four. And I’m being bombarded with images and stories of little four year olds ‘no longer being threenagers!’, who are all ‘so grown up’ and full of ‘sass’ and ‘attitude’ and all the lovely little things that four years olds are. I love that age. I remember it well with Fred.

But my little girl is turning four and she isn’t like those other children. And it hurts my heart.

There – I’ve said it. It actually hurts my heart.

I know that my little girl’s personality is developing every day, she is utterly hilarious. She has the purest soul and she fills my days with utter joy. She has the best dance moves and can be such a pickle! Louisa is so cheeky and her eyes smile at me like no other eyes I have ever known. Her affection and love towards people is the most beautiful thing I’ve ever witnessed. I feel so blessed when I am in her presence – I know that sounds so incredibly over sentimental but it’s an honest emotion I have always felt around my girl. Between us, we don’t need words as Louisa and I are connected on a much deeper level than I have ever experienced with anyone else. She is my soul mate. I couldn’t be without her.

And I am so grateful and feel so lucky that she is mine – yet I’m still sad by other children turning four. How does that work? I really don’t know. Emotions are crazy things.

I also don’t know what the answer is here. I don’t want to unfriend every single person I know with children a similar age as Louisa. I don’t want to avoid family or friends with children the same age as Louisa. I don’t want those people to feel awkward around me. Of course I share their joy at their children’s achievements. I love their children. And it’s not their fault that I feel like this sometimes. Because this is our life. This is what it is. I know I need to learn to sit with this. There is no escape and I need to deal with it because there will always be the next thing. Next year it will – most likely – be children turning five! I know this.

Instead I’ve got to remind myself how incredibly lucky I am that I am getting to celebrate birthdays with my Louisa. That I genuinely have no idea if she will live to an old age or leave me early. My biggest fear is that I won’t have her with me. And because of that indescribable fear that niggles at the back of my mind, I know I need to cherish every moment with her as best I can. David and I know that we will always be the lucky ones that we get to share our lives with Louisa.

I know that. I feel that and I will always be grateful that Louisa is our girl. Always.

But, these triggers hey….. they knock you down sometimes. But I will always get back up. My little girl is so worth it.

I’ve wondered for a long time how much I should share about our life with Louisa. It’s something that my conscience battles with. In general (as many of you know!) I’m a classic over sharer in real life (especially when there is wine involved!) but the internet is a different thing. I’ve always liked posting ‘pretty’ photos but recently I’ve been a bit more honest with some of the things affecting our lives. And I’m not sure if I should be.

So let’s explore my social media posting history…..

When I had Fred I was a serial ‘baby spammer’ (which basically meant I uploaded lots of photos of him, all the time, to my – most likely! – uninterested 26 year old friends!). There were lots of Instagram and Facebook updates of milestones he’d reached, him at the park, trying his first Ella’s Kitchen carrot puff, a few photos of grumpy faces that I thought were funny etc. – very light stuff with very little substance – but a classic case of a proud new mum wanting to show off her cute baby.

When I had Louisa, I started out that way again.

However, I became increasingly uncomfortable with sharing ‘pretty’ photos of her when behind the camera everything was a bit scary. The truth was, I was extremely worried about my baby. I started writing a few longer, probably a bit criptic in hindsight, posts every now and then saying that she was having a bit of a tough time but she was so lovely. I remember posting a photo of her at five months next to a ‘I rolled over for the first time’ baby milestone card. It stung as I posted it as I was already aware that it was a massive fluke and deep down I knew that something was going on. But I shared it nonetheless because I had trained myself to think I needed to. I’d posted milestones with Fred so I felt I should with his new sister.

By nine months I had a photo of Louisa next to an ‘I sat for the first time’ card. I wrote a caption saying that I knew ‘she’ll hit every milestone in her own time’ – when the truth was she could only sit by me wedging her into place and two months earlier her paediatrician had told me he thought she most likely had a severe disability. I didn’t know if what I was writing was the truth, would she ever do things even in her own time? Why was I lying and making out that everything was ok? I think I gave up on the milestone cards after that. For the record, we haven’t yet been able to use the ‘I said mama/ dada for the first time’ card or the ‘I slept through the night for the first time’ (sigh!) card either. Those cards mean nothing to me now, but they were so important when I had Fred and he was hitting them all at the ‘right’ time. I wanted to do the same for Louisa but ultimately I was living a different experience. It took me a while to realise that.

In the past I haven’t liked to post when Louisa has been in hospital. I pick and choose what I want to share about appointments and visits – which weirdly bothers me sometimes because I want people to know how much she goes through, yet also don’t. I’ve always found it a bit uncomfortable when someone posts a photo of their child in A&E or really poorly in hospital. There have been many times we’ve been in hospital in the past where I’ve been too worried and stressed to get my camera out and snap away – I’m not saying that is wrong when people do that, we all deal with things differently, but personally for me it doesn’t feel natural and I often find myself embarrassed in front of the nurses! Because of this we don’t have much photographic ‘evidence’ of Louisa’s hospital visits and the photos we do have I rarely post online. But yet, I did share a photo of Louisa in intensive care four months after she had been discharged as a ‘then to now’ photo on my Instagram account once. I wasn’t sure at the time, and I’m still not sure now, how I feel about those photos. But for some reason I felt compelled to have a picture to symbolise one of the scariest times in our lives. And in a weird way I needed others to see what she’d been through too. But maybe that should have remained private.

Then I decided to write a blog. This blog is proving to be really cathartic for me. It feels good to express some of the thoughts and feelings I’ve had throughout my experience so far. It feels good to have people tell me they like reading what I have to say. But in turn, I have got mixed feelings about how much or how little I want to share. I wonder about the longevity of it as Louisa grows and how truthful I am being because obviously it is not ‘pretty’ or ‘inspirational’ all the time.

But people who read these blogs are often my friends, or people I have met in the past. There’s a connection to most people who read these posts – let’s be truthful I’m not becoming an international blogging sensation here! So it doesn’t feel so wrong to share my feelings with you. But still, my words are out there on the big bad internet and could be stumbled across by anyone.

Then I started an Instagram account to go with this blog and it has confused me even more with what I think is ok and not ok to share. There are more people I don’t know personally following me on there. Yet, on the other hand, they are mostly people in very similar situations to us – so it feels like we are slowly building our own community of online friends through common experiences. And I can only really build on those connections if I’m open about our life.

One of my main concerns though is that I wonder if I’m sharing more of Louisa because she is disabled. If she was a typically developing child would I be engaging in so much online content? Is the balance between what I share about Fred the same as what I share about Louisa? Obviously it is not, I share much more of Louisa, but do I share less of Fred because he is ‘typical’? What about their privacy as human beings – am I respecting his privacy more than hers? I worry about the safety aspect of the fact that I am sharing Louisa’s name and disabilities on the internet. These are all things I consider. My children’s safety is paramount.

So my question is; How much is too much sharing?

In my first ever blog post I wrote about wanting to protect Louisa’s privacy. And I will always endeavour to maintain a line. I don’t want to share things that are not mine to share. I have to somehow find a perspective that works – maybe less about her and more about me?

However, I feel like there is a much bigger picture here…..

If I hide things away surely that is making it harder for children like Louisa? If disabled people continue to live their lives as secrets behind closed doors then understanding and change will never fully happen? Ultimately, you cannot learn about something if you don’t know it needs to be learnt about. I feel that by demonstrating the level of support needed to help my daughter thrive like other children is fundamental in getting people to understand and want to support the thousands of adults and children who need this help.

But I am not disabled. I can’t and don’t speak for disabled people. I can only speak for myself and only partly for my daughter. It’s important to always note that I am blogging about Louisa’s disability through my eyes, not hers.

And what I’ve found since I started writing my blog is a lot more understanding and interaction from friends and family. People have started to try to understand the difficult parts of our life whilst also celebrating with us the happy and amazing parts. In turn, I hope that Louisa isn’t so confusing to them anymore. I do think people who read my posts are starting to build an idea of what she goes through daily just to achieve regular things. And I think, perhaps in the past, they were a bit too uncomfortable to ask. Now I feel like I have opened the conversation and people want to learn. And I hope that certain behaviours don’t seem as scary to people anymore when they not only see it in my Louisa, but also when they see it in other children in their communities who may be similar to my daughter.

I also feel incredibly responsible to show the world that having a disabled child is NOT the worst thing that could ever happen to you. I think so many people have beautiful notions of having healthy and ‘typical’ children and there is the idea that anything other than that would be awful. But I do not see that as the whole truth anymore. For me it is a tricky one because I don’t want people to think I’m saying everyone is missing out if they don’t have a child like Louisa, of course I’m not saying that. But the facts are around 6% of children in the UK have a disability, so this is likely to affect someone you know in your lifetime. And, if you are one of those people who has a child with a disability, I don’t want you to ever feel alone or afraid. Or like your life is going to be horrible. I don’t want you to feel like I did at the beginning. And with a bit more openness and normalising of this life could it prevent people feeling as isolated as I felt? I’d like to think so.

So what do I think? I think there needs to be more information and experiences out there in the world that normalise disability. To show the world that it’s ok. I think that the unease around disability is based on a culture of ableism in the world in which we live. Ableism means that people misunderstand and fear disability because it is portrayed as something bad and difficult. There are not many positive representations of disabled people in the media. Think about how many disabled people you see on TV. Not many. Why is this? If more people speak out and show the truth about a life that includes disability then I do believe that may pave a way forward for better inclusion.

So although I’m unsure how well I am portraying this life of ours on the internet, I am confident that none of the happy photos I post on social media are fake – any more. We are a genuinely happy and ‘normal’ family – disability and all. It took me time to realise that that was possible. I guess this is because before I had a child with a disability I never knew that we could live such a happy life even with all the heavy stuff. I’m sad that I didn’t have a representation of my family anywhere else that could have given me that hope. And sure, our life isn’t as simple and as pretty as I had envisioned, but I’m sure that’s the same for most people! And none of that is due to Louisa. In fact, she is the heart and soul of our family and the piece that makes it as lovely as it is. And even when some days are a real struggle, when I’m pulling my hair out with worry and grief, we still always find the love. And I love celebrating that with everyone more than ever.

So my point is – the world needs to know about Louisa and people like her. And for me – this will always be a bit of trial and error for how much I share to enable that to happen. I don’t know what I’m ok with yet and I think this blogging and sharing journey will evolve as I – over time – find what I am comfortable with and what I think is best for Louisa. I need to be open and honest to educate, but I also need to protect my daughter.

I want to help shape the world for my daughter, I want the world to start to accommodate her needs, but I also don’t want to be in the situation where nothing is private or sacred. She has her own rights as a human being and I need to respect them. I need to find a happy place somewhere in between her privacy but also where I can successfully advocate for her. So bare with me as I work out where I’m going with this!

So, let’s get the discussion going – How do you feel about sharing your family life on the internet? Are there things that you would never share? Do you find my blog posts helpful if you have, or do not have, a disabled child? Have you changed what you share on social media as your children have grown? Do you find it helpful when other people openly talk about things that you are going through?

Let me know your thoughts, I’m really interested to hear different perspectives as I navigate my way through this new territory.

And in the meantime, here’s my latest favourite ‘pretty’ photo of Louisa and her daddy!

This is a letter from the Michaela I am today, to the Michaela who was hurting three years ago…..

Dear Michaela,

I’m the future you, talking to you from about three years from where you are now. I know you are having a really hard time and I wish I could give you a cuddle – but I can’t. All I can do is give you some hope.

The first thing I want to tell you is that everyone is ok. They really are, and you are too. In fact, I want to tell you that you’re all better than ok, you’re happy.

I want you to know that although you are hurting so badly right now, although you feel like you can’t breathe, like the world around you is falling to pieces and the physical pain in your body is consuming you….. it won’t feel like this forever. I promise you, you really won’t feel like this forever. Please believe me.

Yes, they’ve just told you that your gorgeous little baby girl is most likely disabled. That they think she has some sort of genetic condition. Your heart has broken. You physically felt it break in that paediatrician’s office. You’ve never felt pain like it. And yes, yes it sucks so badly. Cry girl cry. You are allowed to be sad about this. This is not what you thought was going to happen in your life. Don’t feel bad for feeling sad. It’s ok. You’re not letting anyone down by grieving. Your grief will come and go over the next few years. Some days will feel better than others. And that’s ok. You’ve got this. Trust in yourself.

And I’m begging you, please be kind to yourself. This wasn’t your fault. This wasn’t because of anything you did or didn’t do before or when you were pregnant. It wasn’t because you didn’t drink enough water or because you drank a few too many Diet Cokes. Stop feeling guilty. Stop torturing yourself.

But I have to be frank here, Michaela. I don’t want to sugar coat the next few years and pretend it’s going to be a smooth ride. That wouldn’t be fair on you. You deserve to know the truth. And the truth is, you are going to deal with a lot of difficult things. And it’s going to be hard. There is going to be A LOT of tears. (You won’t learn from this and will continue to need a good waterproof mascara three years on 😜).

You are going to learn so many new medical terms, and although I know you feel uncomfortable meeting consultants and doctors now, it’ll become a second nature soon. You’ll learn what to say and how to get what you need for your little girl. You will. And you will do her proud. Because even though some things are going to be a fight. You will learn that every fight is worth fighting for her. You will always find the strength. You really will.

I want to tell you that there will be times when people will upset you. When their ignorance makes you cry yourself to sleep. But you will learn how to stand up for yourself and your daughter. You will learn how educate people – or, on the days that you feel too tired, you will learn how to block out what they say. It’s ok not to educate everyone. It’s ok to let things go. You’ll be happier if you realise that sometimes people just aren’t thinking. They are not bad people. Don’t pretend to yourself that they are just because they are not walking the same path as you.

You will lose touch with friends. I’m sorry to say it but it’s true. They won’t understand how you are feeling and you will be too emotional to communicate your pain to them. Don’t worry, you will reconnect with all the people who matter when you are feeling better and you will learn that they too had stuff they needed to deal with. You are not the only person hurting in this world. Don’t take things personally. And the good thing is, the friends who stick by you will always be there at the end of the day, with a glass of wine, a listening ear and a cuddle. They will be your friends forever even when you move away and they will always love your girl. You will also make new friends. Friends who understand your new way of life. And you will cherish them.

You will fall more in love with your husband than ever before. You will become the best team. This is one of the most wonderful things to come out of all of this. Your husband will show how incredible he is, he will put his career ambitions to the side to get the best for you and your family, he will fight for your daughter’s rights. He won’t let anyone break you down. He will stay up all night with you to tend to Louisa. He will clean up the poo and sick. He will step up more than you can ever imagine. He will make you all laugh and be there for you all even when he is feeling stressed and worried. Even when he is feeling the pain. He will hold you tight when you think you can’t go on. And he will help you stand up. He will hold your family together on the days when you struggle to get out of bed. He is wonderful. I’m telling you that you are one lucky lady to have that beautiful man by your side. Please be kind to him.

And I’m being very honest here. You will struggle with your mental health. You will have days when the pain overrides you and the fear of the future weighs too heavy to handle. But you will get better. You will find so much happiness once you admit that you are struggling and get the help you need. Don’t put it off. You matter too.

And you will see your beautiful children grow big and strong. Your Fred will make you howl with laughter, he will lighten your life with tales of soldiers, dinosaurs and Pokemon characters. He is already so lovely right now with Louisa but he will become even kinder and more understanding of her as he grows. He will show you how innocent children easily accept differences. He will restore your faith in the world. He will snuggle close to you and tell you that he loves you every single day.

And your little girl – well what can I say?

She will walk. She will start communicating. She will surprise you every step of the way. She will bring you more joy than ever. Because you will start to appreciate very different things in life. You will appreciate all those tiny inchstones that no one else notices. She will widen your perspective and teach you so much. You will want to cry with joy when she presses a button on a toy. You will literally cry for days because she has the strength to sit in a trolly. And you will visit Costco regularly just to see her do it. Let yourself be proud of the tiny things. Those small things will build together to create huge, amazing things. And remember, don’t compare Louisa to others. It will only steal your happiness. She is everything she is supposed to be, she is perfect. So, instead, please remember to celebrate everything.

Because, after a few years, you will start to believe that Louisa was meant for you. That all of this was what the world had planned for you and your family. And you won’t always feel as mad as you do right now. In the future, rather than feeling rage at the world, you will find peace. You will actually feel really lucky.

And you will learn how to live more in the moment rather than being overwhelmed by the future. You will find a calmness in that. There will be some days that you do think ahead and it will stop you in your tracks as you wonder how you will manage. But you will manage. In fact, you will thrive.

And you will be brave and find courage. You will put yourself out there and show people your vulnerability. You will admit that you’ve found it tough. You will ask for help when you need it. You will let other mums who are new to this ‘special needs’ life know that it’s ok to be scared. You will tell them to ‘feel their feels’ because this isn’t an easy gig. And by doing this, you will show people how strong you are. You will encourage others to believe in themselves and you will definitely begin to believe in yourself.

So Michaela, I promise you that the future is not as terrifying as you think it is right now. There is so much happiness to come. There are so many miracles you are going to witness. You’ve got so much to look forward to. Your life is going to be beautiful. Maybe even more beautiful than you envisioned because you have the most precious little lady in it. Hold tight and ride the storm and through the scary lightning flashes and dark rain clouds, brighter days are coming. And I believe in you.

Love Michaela xxx

It has been a long time since I have published a blog post. That’s because, although a few months ago my head was buzzing with all the different things I wanted to address with regards to disability and all the different things that were going on in our lives with Louisa, when the Coronavirus situation got very real, everything I wanted to say felt less important in comparison to the very serious situation everyone had found themselves in.

Yet as I started writing various posts (I have written many drafts but I haven’t published any) I’ve found that my posts appear to seem somewhat political. I don’t want to tarnish my message and teachings about Louisa with politics. I don’t want to lose the chance for people to learn about my beautiful girl because perhaps we don’t agree on the level of support people with disabilities need in this country. Louisa is so much more than any of that and I believe everyone needs to learn about her and other people like her.

However, there is no denying that as parents of a disabled child, David and I have stronger views today than we have ever had before. Mainly because we have seen first hand how vulnerable members of our society can be let down. The truth is, it doesn’t affect you until it affects you. So many things definitely didn’t affect us until we had Louisa. And I’m not expecting people to think the way I think through this blog, but yet I wonder if people understand the smaller picture about Louisa, they may think differently about bigger picture. Just a thought.

I feel I need a blog post acknowledging Coronavirus and how it is affecting David and me as parents of a child with a disability. And although it’s such a huge thing, I don’t feel as though I can brush over it as it is having such an effect on everything in all of our lives. After this post I will go back to focusing on some of Louisa’s various needs and how we are striving to achieve all the little inchstones to help her reach some very big milestones. Watch this space!

Over the past few weeks (after – understandably- a complete shut down of services) we have seen that things are starting to move with the NHS and we have had various appointments conducted over the phone, like physio, occupational therapy and speech and language therapies. We’ve had updates with her social worker and various professionals involved with L. We even took Louisa into hospital to see a consultant last week as it couldn’t be done over the phone. Louisa’s therapists have given me lots of instructions for how to help with any regression Louisa may have as a result of being at home, which unfortunately we are experiencing. And, as grateful as I am to have that vital input, once again the heavy weight of not just being Louisa’s mother, but also being her carer, her nurse, her physio, her occupational therapist, her speech and language therapist etc etc….. takes its toll. Sometimes I wish I only had to be her mum. I never take for granted the ease at just being Fred’s mum. It’s something I am eternally grateful for.

I’ve also recently had a really good chat with L’s paediatrician (anyone who knows me knows we think he is brilliant). He really lessened my anxiety regarding Louisa being in the extremely vulnerable category. After talking it through with him, I realised that although the system has flagged her up as ‘extremely vulnerable’ – when looking at the bigger picture of the Louisa we know in person, not just on paper – there is an overwhelming indication that it is more of a precautionary measure to shield. Presumably because there are so many unknowns about her rare genetic disorder. So rather, we believe – from the Louisa presented in front of us at the moment – she falls more into the ‘clinically vulnerable’ category rather than the ‘extremely vulnerable and needing shielding’ category that the NHS England letter we received said. Louisa’s Ears, Nose and Throat (ENT) consultant also agreed with this as we went through Louisa’s history and discussed all the risks. This isn’t us wanting to get out of shielding Louisa, not at all! Our main priority will always be to keep her safe and we have no plans to change what we are doing right now. This is us doing a risk assessment and considering all the evidence for the future. We will have lots to think about as the lockdown relaxes and how we are going to protect louisa medically whilst also protecting her development. We will also have to consider how we will manage the future with Fred going back into the world and school and David going back to work before there is a vaccine/ greater control over the virus. Unfortunately it’s not just about her. I don’t know what we will do, I guess we will cross that bridge when we come to it. And to put it bluntly, David and I are not overly concerned with other people’s opinions for what we should or shouldn’t do (other than her various consultants’ advice of course), we are confident that we will make the best decisions for our family and will support each other through this like we always do. We just need to weigh up all our options, find what we are comfortable with and take it from there. Everyone will have their own things to consider throughout the next few months. I make no judgement on what anyone does, you need to do what you need to do to get through. If that is sending your child to school or keeping them at home, if that is having carers or not, that is your personal decision based on your personal situation. We all only want the best for our families. We are all just trying our best.

But, and here I go….. the truth is, we are finding this hard. I know perspective always tries to show you that other people have it worse. And I know they do, I know that. I know how lucky we are. And I am so grateful for all the good in our lives just like I know everyone reading this with a roof over their head and food in their fridge is. But I guess what I want to say that although we portray that we have got this, that all is ok – and of course ultimately it is because we are safe and we are well – the truth is, the physical and mental toll caring for Louisa’s needs takes on us is overwhelming. That there are days when we are really struggling with the enormity of it all. There is no denying that it is very different raising Louisa to raising a typical child through lockdown. It really is. There is no sugar coating it.

Our – nearly 4 year old girl – cannot hold a spoon or feed herself, she needs support to drink, she doesn’t play instead she just destroys everything and makes more mess than you could ever imagine – there is no control over this. Having to watch her for 100% of my day and night, is so tiring. She still screams all night. She is such a danger to herself. She is so tall now and she can reach door handles, she can reach knives, plates (you name it) on the kitchen counter, table lights on the side boards, again – you name it and she will pull everything down. She doesn’t know what is dangerous and she doesn’t learn from her mistakes. We are having to pin her between stair gates at the moment for her own safety. She needs to be carried up and down the stairs as she cannot do it herself, lifted in and out of the bath, in and out of her high chair, in and out of everything, she needs to be physically supported throughout bath time, throughout nappy changes. And she is heavy now. Her hypotonia means she is literally a dead weight. Looking after her is very physical. She needs changing a million times a day because she smears/ gets things down her, she is obsessed with getting into her nappy, we have to mitigate that at all times otherwise we have to spend ages wiping poo off of walls and carpets. She will not listen to a book or engage in any sort of play with me. Her attention span is about 10 seconds. Even playing play doh is a two parent job. David holds her hands whilst I sit in front of her face to face to engage with me and prevent her from eating it. She eats EVERYTHING. It’s so scary that she doesn’t know what is and is not food. This is not the same as typical parenting. This is not. I love her with every piece of my being, but this isn’t a phase. This isn’t an 11 month old baby who will outgrow this , this is a little girl with severe developmental delay. This is a beautiful girl who needs services. And although I feel like I’m just listing all the difficult things she does and although I’m aware it makes it look like I’m upset or annoyed – I need you to know that this is not ‘normal’ what we have to put in for Louisa to be safe. And to get her to thrive requires so much more time and energy that unless you are living this life 24/7, you really will find it difficult to understand. This is so hard for us and if I sweeten it all by saying how beautiful and lovely she is (which obviously she is!) I feel it confuses the view that we are just like every other stressed and tired parents. Because, the truth is, as much as I hate highlighting the differences, parenting a child with so many additional needs is not the same.

But, I’ve learnt that if I allow myself to fall down the rabbit hole of all the things Louisa needs help with, when I let myself think about how wide the gap is between Louisa and typically developing children the same age as her, if I allow jealously or bitterness of how (seemingly*) easy other people have it (*because I know nothing is easy for anyone right now – everyone has their struggles). But if I let negative feelings overcome me, the weight of that pain is so heavy that I crash. I can’t hold myself up. Whereas if I just focus on today, I can stand, I can breathe and I can enjoy the now. I am all too aware that the now might possibly be the best it is ever going to be. Louisa could start significantly regressing tomorrow and I won’t be able to forgive myself if I look back at these days and realise that they were the best days yet I was too sad and bitter to enjoy them.

And that’s how I am seeing this pandemic. Embracing today because it could all change tomorrow. I am focusing on my little team having a lovely time in our little bubble. We have laughed, played, had teepee sleepovers in the living room, had lovely walks together. And we’ve had fun. David and I have spent more time together than ever before and it’s been great! I cannot let myself worry about how this pandemic will affect Louisa in the long term. I cannot cry about the missed appointments, therapies and surgeries. I cannot let myself be weighted down by the things so far out of my control. I cannot cry for all those struggling through this, I cannot cry for those in much worse situations because I cannot carry the weight of the world when I am just about managing to hold my family up. All I can do is my best to support others such as donating to food banks and checking in on friends. And for many people in similar situations that is all we can do.

Louisa has taught us – she teaches us so much every day – that happiness isn’t about anything else other than your own state of mind. You can find happiness even in the darkest moments. In the middle of a pandemic you can sit in your house and laugh until you cry because of silly voice overs on Tik Tok. Being happy does not mean you’re naive to the pain outside your bubble (or even inside your bubble), it’s important to acknowledge what is going on in the world. But you have to be kind to yourself and in times of trouble, try and only let in what you know you can handle. Because tomorrow you might not have the option. And you might have no choice but to have to handle something with even more weight. Maybe this isn’t the best way to deal with things because we can’t always be scared of the future. But – at this moment in time – it works for me. Yet as always, I know this is a luxury because David and I have each other. My privilege isn’t lost on me I promise you.

But that doesn’t change the reality that I’m tired. Some days I am really struggling to be everything Louisa needs. And other days I worry about how my focus on her physical and mental needs is impacting Fred – and his very typical little five year old boy needs – in the middle of this crazy time. But for the first time in my life. I don’t need people to tell me I’m doing a good job. For the first time ever I know that I am doing a great job, especially in these circumstances. That I’m doing really well. That we are still achieving great things even when things are tough. And doing it all without any support (support that the state knows that we need because the authorities recognise Louisa’s needs are especially significant). We are coping and pretty much every day (give a few days here and there 😜) we are finding joy. That’s amazing. But I am yearning for the day that we can have some help. I know my body can only take me so far. Louisa’s needs are becoming more and more intense as the days go by.

I don’t want this to come across as ‘everyone has it hard but we have it harder’. That is not what I am trying to say. I know that isn’t the truth. We’ve got it pretty good and this isn’t a competition. Every person reading this is in a very different situation. And I am so lucky to be in my situation. Rather I just want to acknowledge the difference between how we are muddling through with Fred compared to how we are muddling through with Louisa. I want the difference acknowledged that this is why parents of children with disabilities need the support of charities and social services. It is not a case of ‘lazy’ parenting or not being able to handle your own child, but rather being honest that you are only human and not always able to fulfil your child’s very complex needs. I am fully aware that I cannot be everything Louisa needs. I can try my best but ultimately that is why we need the respite and care packages in place. That is why we need services. This is why I need a break. Because it is hard.

So although not everyday is easy, I’m reminding myself that brighter days are coming. That help will be here once again. That when the day comes when Louisa can safely go back to nursery, those 15 hours of respite and the additional carer hours we have recently been given will never be so appreciated by her or by me! I’m also reminding myself that everything in life is temporary. This too shall pass. And when we have all picked ourselves back up, I know nothing will look the same to anyone after this.

And although I’m just trying to find silver linings here….. maybe that isn’t such a terrible thing.