On Thursday I took this photo of myself. And as much as I’ve never been one to want to moan or expose the rubbish parts of my life on social media (or – let’s get really honest here- show an ugly photo of myself 😉) I promised when I started writing this blog, that I would try to always show you my truth. To help you understand the realities of having a child with special needs. And I know that by making it pretty I’m not showing a true and honest representation of what goes on in the real world. So, here it is….. this photo represents this week’s truth.

I’ve had a rubbish week.

This week has been hard. So so hard. And I’m tired. I’m tired of fighting so much for so long for all the different things my daughter needs to try and make her and our family’s lives better.

I feel exhausted with the constant fight.

And the reality is, David and I are only three and a half years into this fight. We have a whole lifetime of fighting ahead of us. How will we manage? Will we do her justice? We really can’t mess this up.

Will it ever get any better? Will it ever get any easier? Will the endless paperwork to get the services our daughter deserves ever end? Will we ever catch a break?

Will Amey – the contractor that runs service family accommodation for the military – ever comprehend that changing our daughter’s shitty nappy with the toilet door open and her legs poking out into the hallway (because there is not enough space) is unreasonable? That it is a breach of her human rights to be stripped of the dignity of having her toileting needs addressed in private? Especially as she gets older. Will they ever move us to the suitable housing on the next street that remains empty? Why does everything have to be about policies, process and money? Maybe I’m too naive. (I’m sure I’ll blog about the nightmare we are having with them another time).

Will we ever get a blue badge, a special needs buggy, appropriate level Disability Living Allowance for our girl so that her quality of life can improve? Will she get into the special needs school we are so desperate for her to attend? The process to get all these things is so long winded and time consuming. Why does it need to be so hard? I know we will get there – but it is all a fight.

And then, this week, I let myself go there….. will she ever talk to me? Ok, I know that might be a too far fetched dream….. but will she ever be able to communicate her wants and needs to me? Will she start signing? Or use picture exchange communication? Will I ever hear her say ‘mummy I love you’? Will she always have to wear a nappy? Will David and I still be changing her when she is an adult?

But I know I need to rein it in. I learnt early on in this journey that I have to stop my mind running away from me. It’s taken me to dark places in the past that I don’t want to visit again. I have to be brave and work towards our short term goals. I can’t let my mind wander or let my heart break. Worrying, crying and hating the world for being so difficult doesn’t change things, it just steals today’s happiness from me. And I love being happy. And I know that I am usually fairly good at holding it together and enjoying the little things in life that make it such a beautiful life to live. I don’t want to lose enjoying the little things because I’ve allowed myself to be overcome with fear of the big things. But….. sometimes it really is ok to let people know you’re not ok. And this week I haven’t been ok.

But – just putting it out there- surely there is an easier way for services to be given to those who need it? I’ve seen some real madness this week. I’d like to address some serious problems with the system – when I have some time and energy.

Because there is no denying that this is hard. It really is hard. And sleep deprivation is the absolute worst. I have to remind myself that I am dealing with some tricky stuff on very little sleep so no wonder it feels overwhelming at times. So on Thursday I gave myself permission to let the tears flow. I allowed myself time to grieve some very difficult truths. And cry about the injustice of the beurocracy surrounding being disabled. And luckily, I know that next week I will be ok again because – in spite of it all – I love life and I’ve got the most incredible husband supporting me. We really are blessed.

Anyway, enough of this week, I’ve promised myself that next week I’ll be back in the game, I’ll be back fighting after a quiet and chilled weekend with my Team L-D. My little world.

So here – once again- here is the truth. This week has sucked.

And I think for future weeks like this – because they will inevitably come my way again as we need to all remember that this is a journey that will have so many ups and downs – I need to invest in a decent waterproof mascara.

Big love to all the special needs parents out there working tirelessly behind the scenes to give their children what they deserve, the best possible life. Some days and weeks are harder than others, but we can do this. Because beyond everything, we have the most wonderful little people who are always worth fighting for 💪🏻

Dear Fred,

I just wanted to write to you to tell you how much I love you and to tell you how proud I am of you.

I want you to know how smart, brave, funny and beautiful you are. I want you to know that you are important, that you are loved and that the world is your oyster. I want you to always continue to march to the beat of your own drum….. because that rhythm really is the best.

I want to thank you for being the kindest and sweetest big brother to Louisa. She is so lucky to have you. We are all so lucky to have you.

I remember the moment the midwife first passed you into my arms like it was five minutes ago, because it was honestly the best moment of my life. “You’ve got a little baby boy.” she whispered and my heart danced and sang and it felt like all my dreams had come true. You made me a mother. The most incredible thing that has ever happened to me.

You were with me right at the beginning. You were sitting next to me, you had just turned two and we’d just moved to a brand new country away from everyone and everything you knew. But you never complained. I was 36 weeks pregnant with your sister and in that small hospital room the doctors told me that the baby in my tummy was missing a kidney. It was just you, me and them. I feel like this is the moment that changed me forever – because I knew, in that moment, that there must be more to your baby brother or sister’s story. And you were with me. You were happily watching Paw Patrol on your iPad but you noticed that I was crying, you looked at me and told me it was ‘okay mummy’ when the receptionist sat me down for a cuddle because I was shaking in shock. You held my hand and didn’t make a fuss as I drove that hour long car journey home to see daddy because you knew mummy was feeling a bit sad. You didn’t ask questions, you just showed me love. You don’t remember this, but I always will.

When most two year olds were terrorising others at soft play, you came with me to Louisa’s appointments. You sat in the corner quietly so that mummy could speak to the doctors, you helped and got involved in physio by encouraging Louisa to sit up, crawl, stand and eventually walk by waving different toys in front of her to encourage her. You played with all the therapy equipment and had a blast. You entertained her therapists with your funny jokes and made us all laugh.

You have always happily gone to friends houses when mummy and daddy have had to go to the hospital with L. You are so adaptable. When we were in Canada you were always so excited when we went to the Lego hospital because you thought it was cool, even though you knew that when we got there it was all about your sister. You’ve laid in Louisa’s hospital bed and played with the bed remotes – finding fun in every situation. You’ve made the nurses laugh with your cheekiness.

And throughout everything, even to this day, you always clap and cheer when Louisa learns a new skill, every time she reaches an inchstone you celebrate with daddy and me – as proud as punch for your little sister. The way she looks at you with so much love and admiration just proves how important you are to her. You are showing her the way.

Thank you Fred, thank you for all the times you have been strong when I have felt weak. Thank you for keeping me going (even though I know that you don’t know that you do!). Thank you for not getting mad at the attention your little sister inevitably gets because she needs a little extra help.

Thank you for caring for Louisa when she is overwhelmed. Thank you for comforting her in the car when she is sad by holding her hand or sorting out the iPad for her. These little things are such big things.

Thank you for your own tantrums – for keeping me on my toes. For giving me something ‘normal’ to moan about. Thank you for being a little nightmare sometimes – I love your feistiness and your stubbornness. Even though it exhausts me that you take forever to get dressed or tidy your toys or groan about what colour Pokemon toy you got in your McDonald’s happy meal, I secretly love that you do these things.

I love all the questions you ask, the way you are always wanting to know more – how you constantly ask ‘why?’. I love your zest for life.

And I want to thank you. Thank you for the cuddles, the kisses, the jokes and the love.

And I want to apologise. I’m sorry I’ve let you down at times. I’m sorry I’ve been so preoccupied with Louisa at meal times that some days I’ve barely spoken to you at the table. I’m sorry we don’t read your reading book when Louisa is having a meltdown. I’m sorry that you are woken in the night by her screams. I’m sorry that you have to keep all your small toys locked away in your bedroom because Louisa tries to eat them. I’m sorry when she’s bitten you and it’s drawn blood – she doesn’t understand, I promise.

I’m sorry when I have cried in front of you. I know I shouldn’t and I really try so hard to keep it away from you. But I have at times, and I’m so sorry that you’ve had glimpses of my pain. I hope you don’t remember those times.

I’m sorry that I have to set boundaries, that I can’t let you do what you want all the time. That’s because I’m your mum, I’ve got to show you right and wrong even if I seem like I’m being unfair that I won’t let you watch your iPad for 23 and a half hours of the day or eat chocolate fingers for breakfast, I know you’ll understand when you’re older.

I’m sorry that I’m on the phone a lot, talking and fighting with different professionals, researching different things that could help your sister or even when I’m just trying to escape it all by meaninglessly scrolling Instagram, when all you want me to do is play with you. I promise I’ll put my phone down more. I’m sorry that I’m tired at the end of the day when we’ve had a busy day of appointments.

I’m sorry that you still need help to ride your bike without stabilisers because mummy and daddy have been too busy and too tired to help you. I promise that we will sort this out and you will be riding confidently by the summer.

Sometimes your daddy and I have worried that you are missing out. And, in truth, there have been times in the past where perhaps you have. But I know deep down that having a sister like Louisa could never be classed as ‘missing out’. I know our family is making you even more empathetic, even stronger, even braver, kinder and wiser. I know your heart is big and your soul is pure. I know that you will make the most incredible man because you are already the most incredible boy.

Fred, I am so proud of you. I promise I will keep trying to do my best by both you and Louisa. I promise that every time I mess up I will try harder next time to get it right. That I’m trying to be a good mother to you. I promise that no matter what, you and Louisa are BOTH at the forefront of every decision I make and everything that I do. You are my world.

I love you with all my heart and all my soul.

You are my best.

I love you. I love you. I love you.

Lots of love mummy xxxx

“So what is actually wrong with Louisa?” Let’s be clear right from the start, just in case there is confusion….. there is nothing ‘wrong’ with our girl. She is wonderful and funny and everything she is meant to be. She brings more joy and laughter into our lives than we’ve ever known. But, I often find that people are confused by her. And I have to admit that before I had Louisa I also believed that doctors knew everything and that every illness/ syndrome had a name. But we had a hard lesson that they don’t. I won’t go into the details of the early days and what led us to where we are now (maybe I’ll talk about that more in another post one day) but I’d like to explain Louisa’s current diagnoses and the impact they have on her every day life. Once again, to be clear, Louisa is SO MUCH MORE than any diagnosis – yet I appreciate that by giving some context helps people to understand.

So here goes….

Currently we are exploring the genetic mutations Louisa has and in particular the de novo variant in the ZNF865 gene. Now I know that sounds a bit technical and let’s be honest, I’m no geneticist here so I’m probably explaining it all wrong (however just to put it out there Louisa’s new Great Ormond Street geneticist referred to David and me in one of her clinical letters as ‘the parents are extremely well informed’ so I basically feel like we got gold stars!). Anyway, I’ll try and explain it the way I understand it through the explanations we’ve been given in the past…..

Think of a library having 22,000 books. Louisa’s first genetic test was like this, they basically went into the library (her genes) and checked that all 22,000 books (genes) were there. Louisa has all 22,000. So then they went to the next stage. Which is basically like going into that same library, getting each and every one of those 22,000 books off the shelf and reading them ALL from front to back to check for any spelling mistakes (variants). David and I had this testing too. From this, they were able to see that Louisa has variants in three genes. For one of them we were told they only knew of a little boy in Denmark with the same thing who was showing similar symptoms. It was a completely random occurrence- something that just randomly happened during conception. The other two gene variants were also extremely rare and were inherited from David and me. It was these variants that were initially believed to be the cause of her special needs. She had LOTS of testing to try and confirm this as these genes were associated with Muscular Dystrophy. I have to say when all of this was going on it was hands down THE WORST time of my life. I pretty much lost the plot. I was traumatised by all the information we were being given. I look back at the Michaela then who was so utterly terrified – genetics was a big scary new world – and just want to give her the biggest hug. After a year of testing and monitoring with everything coming back ‘normal’ these gene variants were put aside. Louisa didn’t look to have muscular dystrophy- they don’t know what the impact of these gene variants are – and we have been told they cannot completely discount MD until she is around five. But it looks very unlikely at this moment in time.

By this point we had kind of parked her genetic testing. The pain we had from this time and all the things Louisa went through was too raw and Louisa was doing ok. We kind of accepted that we most likely would never find the reason behind her disability and started to feel more at peace with this. The truth is it doesn’t really matter the diagnosis- what’s more important is to treat the symptoms. As long as we were getting services for our girl without a diagnosis we were ok without the label. However, we stayed in touch with Louisa’s geneticist in Canada (where she was born) and he was linked with her new geneticist in London when we moved back to the UK. And this summer he had some news. In the nearly two years since Louisa’s genetic testing they had recently found some other people with the other gene variant (ZNF865- the one with the boy in Denmark, the completely random mutation). All of these patients have similar symptoms to Louisa. It’s crazy. The count is now five – five people in the WHOLE WORLD (that they know of). There is no name for this syndrome – remember we are working with TINY numbers here but with this information geneticists are currently testing the gene variant in a laboratory in Canada with the hope that within the next few years it will be published and recognised as an official ‘thing’. We are very aware that things change and not to get our hopes up too much. We also know that as science is developing we have to have patience. The other thing to note is that if it is proved that this random gene variant is the cause of Louisa’s delays – the situation we are in could have happened/ could happen to anyone.

So what does this mean?

I appreciate that all this information doesn’t actually tell you ‘what’s wrong’ with L. But remember our genes are so important to the function of our brain and bodies. Having a variant of some kind can cause a whole set of problems. And I guess a quick way to explain it is that she has a neurological disorder due to genetic variants. But here is a list of L’s current (and main) issues;

Global Developmental Delay

This is one of the main things that affects Louisa’s daily life. This basically means it takes longer for her to reach certain development milestones than other children the same age. The way I describe it to Fred is that Louisa finds learning tricky, she struggles to learn new things. For Louisa she is delayed in learning to walk and talk (we have started to get better with the walking but we currently have no words), her movement skills and interacting with other people socially and emotionally are all extremely delayed. I cannot leave her for one moment. She doesn’t understand what is dangerous (she will happily climb on the breakfast bar, stand up and walk off and fall crashing to the floor – you may think that’s very similar to your child, but Louisa will do it again and again without understanding that it is hurting her), she has very little concept of what is food and what is ok to put in her mouth and what is not (for example some of the things we have found in her poo would shock you!). Her GDD means eyes have to be on Louisa at all times for her own safety. Other little examples of things she cannot to do – at the moment – are things like playing with toys such as pressing buttons and stacking blocks and she doesn’t understand how to use cutlery so we still have to spoon feed her.

Hypotonia

Hypotonia is basically a fancy way of saying low muscle tone. Louisa has struggled with her tone from very early on, as a baby she was like a floppy rag doll. As she has grown it has meant sitting, standing and walking for example are all a massive effort for her. She is pretty clumsy and falls over all the time whilst also finding it hard to get up. She isn’t able to walk up and down stairs, even a tiny gradient change will have her falling over. Louisa is also ridiculously flexible – we’ve had times when her toes have literally been facing the opposite direction!) . Louisa also finds sucking and swallowing difficult (cue awful feeding difficulties in the early days and currently having to cut her food into tiny pieces and monitor/ stay super close to her when she eats as she has a high risk of choking). For hypotonia Louisa receives physiotherapy, wears SMOs (which are little plastic braces/orthotics strapped to her feet ) and speech and language therapy with a focus on chewing and swallowing (which for her are very delayed). We also massage her regularly and stretch her muscles.

Laryngomalacia and Tracheobronchmalacia

We were first told Louisa had Laryngomalacia (LM) when she was seven weeks old. Her breathing was extremely laboured and she wasn’t feeding and had been classed as ‘failure to thrive’. She snored (still snores) so loudly – but that is actually her airway collapsing as she breathes. For Louisa this is caused by a neurological disorder, the physical make up of her larynx and trachea and bronchi are fairly normal (a little narrow but that’s Louisa all over) but her brain is not sending the signals to make this all work. It’s basically a bit of a floppy mess. Most children outgrow this as they get older and stronger but as Louisa’s is neurological it’s not as simple. Saying that, we have noticed a great improvement in Louisa but she still struggles to eat and gets breathless when doing physical activity. We are very conscious to keep her well as things like croup can be really dangerous for her airway.

Reflux

Louisa continues to have reflux even at three. This is associated with the above airway disorders. She has been on quite a few different medications since she was tiny. We’ve had times when she refused to eat and screamed every time food went near her. NG and G-tubes were on the cards for a long time, for years I had to cuddle her whilst I gave her purées as feeding was just so traumatic for her (she had puréed food up until she was about two and a half – we now have to mush a lot of her food to ensure that it is safe for her to eat). Thankfully she is doing better nowadays and there are less tears at meal times.

Hearing/ sight problems

Louisa has never passed a hearing test. This was one of the first things that made me aware that things were going a different way for her. As a baby she flat lined every test. I found it really scary seeing all these other baby’s having a quick test with a quick beep and that not happening for Louisa. We had so many tests. At 15 months she got her first set of grommets and then she got her second set last year. We haven’t noticed a huge difference in her hearing but the issue is that we are not sure the difference between what Louisa hears and what she is listening/reacting to. For example she will not react to the loudest bang but then will hear the wind outside the window. These tests are ongoing we have more to come to see what kind of conductive hearing loss she has. Louisa wears glasses because her sight issues are related to her hypotonia. She was cross eyed as a baby but that’s because her eye muscles find it hard to stay central.

Insomnia

I struggle with this one. At the moment this is what affects our quality of life as a family. Insomnia makes me want to cry the most right now. I can’t bare it when people tell me they are tired when David and I have literally had zero sleep for the past three years. I know that’s no one else’s fault (you are allowed to be tired!) but it is so hard living with a child who has such terrible sleep and who you can’t reason with or make things better for. We are currently seeing to Louisa nearly every hour. She screams most of the night. No one knows why she screams – is it pain in her ears or her tummy? Is it her reflux? Is it behavioural? We’ve had tests, nothing has come back from these. She has medication to sleep (it’s not working) and we are having a special needs bed being delivered by social services soon so she can be in a safe confined area (with high sides) as when she wakes she currently rolls out of her toddler bed and screams (we moved her from a cot because she was climbing out and falling onto the floor). I won’t go into too much detail as I am wanting to push to see a sleep disorder specialist in London – but you know NHS services/ waiting lists are meaning we are having to try other avenues first.

Ectopic kidney

This is a long old story but I was 36 weeks pregnant we were told that our unborn baby was missing a kidney. It turns out that she wasn’t, but rather her left kidney is upside down/ back to front and in her pelvis. Currently it is working fine – she’s super girl – but we have to keep an eye on it.

Sensory Processing Issues

In the UK they don’t refer to this as a disorder but rather it is known as something that is associated with other things such as autism. But for Louisa her sensory processing problems mean that the world can be a super scary place for her. Loud noises make her cry, and in busy places she needs tight squeezing and cuddles. She doesn’t feel pain like we do which is a major issue as she doesn’t stop doing things even if they hurt her and are dangerous (she will burn herself on the oven repeatedly- if we let her that is!). This is such a big topic that I’ll probably go into more detail at another time because now I’ve learnt more about it (I went on a parent workshop with Louisa’s NHS occupational therapist and it was so interesting!) I’ve realised how sensory processing is important to even mainstream children not on the spectrum.

So these are the things that are currently on our radar. Our main worries for Louisa at the moment are her mobility and her understanding. She is getting bigger and heavier and I have to carry her everywhere. Physically things are getting tougher. Emotionally it can be extremely exhausting keeping on top of the thousands of appointments she has. And let’s be honest, baby proofing your house only really works for small toddlers, not tall three year old girls who can reach knives at the back of kitchen surfaces. Making sure she is safe is our main priority. But you can’t baby proof the real world – especially when you don’t have a baby anymore – so having eyes in the back of our heads is a current must!

This list is not exhaustive.

I feel like this blog post is really long and boring, so if you’ve got this far well done and thank you for reading! I hope it gives you a general idea of Louisa’s struggles and how we are trying to manage them right now. I hope for future posts you will know what I’m talking about from this information. Any questions please ask away!

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When I was teaching – before I even had Fred – I remember a teaching assistant telling me a poem about a parent’s view of having a child with a disability. I can remember thinking it sounded beautiful. This memory sticks in my head. And to be honest here, I always think back and consider that maybe there were a few signs in my life, before I had Louisa, that I was going to get my very special gift.

I know there are some special needs parents who do not like this poem, that it grates on them, that it isn’t their truth. But, for me personally, I really like it. I feel it captures some really important emotions that I have experienced on this journey so far. I often come back to it when I feel sad or overwhelmed just to remind me how beautiful life in Holland is.

So I’m sharing it with you. I hope you enjoy a taste of Holland.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” 

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

End.

Keep your face to the sunshine and you cannot see a shadow.

– Helen Keller

Welcome to my new blog Rare and Relatable.

This is my story, written from my perspective, about raising my three children – one of which has an extremely rare genetic disorder.

My aim for this blog is to celebrate differences and educate others about disability. To show how rare can also be relatable. It is also for other parents of disabled children to – hopefully – feel seen. You are not alone.

Before I had my daughter, I knew very little about physical and intellectual disability. I had so many preconceptions and misconceptions about the world of disability. I was scared to even use the term ‘disabled’.

Six years on, I am still on a huge learning journey – specifically with being the parent to a child with a severe disability, but I’d like to share my journey with you. And maybe I can change some of your preconceptions and misconceptions. Perhaps I can stop you from being as scared as I was when I first found out my daughter was disabled. I want to show you that although having a child with complex needs can be incredibly challenging at times, it is also so incredibly beautiful. That having a daughter like ours is a blessing. I hope by showing you our normal, you can grow your own understanding and pass on to your own children how important it is to be inclusive and kind to all members of society and to never see anyone as inferior or not important. That everyone has their place in this world.

I want you to see my daughter how I see her – a gorgeous and wonderful miracle who will change the world.

I hope you enjoy learning about our girl, our family and our fight for inclusion and understanding.

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This is my first post and if I’m truthful, I’m terrified! I’m terrified that people will laugh or think I’m super cringe. I have this horrible image of people saying, “Have you read Michaela’s blog? It was so embarrassing!”. Now, I don’t for one moment honestly think that by me writing a few words on the internet I’m going to be the centre of everyone’s conversations, and if they do, I’ve evolved so much as a person over the past few years that I do not really care what others think anymore. But still, I have to admit I feel quite exposed.

You see the reason I am starting this is that recently I’ve felt like I’ve got a lot to say that I’m not saying, words go around and around in my head and I just need to get my views out there. I want to share the joys and pain of the life I have found myself in. I honestly think it could speak to other people who are in a similar situation/ their friends and families. And so, going into the year 2020 I’ve decided to put myself out there into the big bad internet. To have confidence in my words. To believe in myself that my words and opinions do matter and some people will be interested and will care. For me it’s important to realise that other people’s opinion of me doesn’t matter, in the words of Rachel Hollis (if you haven’t read her book ‘Girl wash your face’ you need to!) “Other people’s opinion of you is none of your business.” For those who are not interested in disability please don’t click on my blog, save yourself. But for those of you that are, if I can resonate with just one other person, I can make a difference. If one other mum of a disabled child can read my blog and realise they are not alone then it doesn’t matter how cringe this whole thing is.

Nearly three years ago, when I was first told my daughter was disabled I searched the internet to try and find other people in my situation. I found a lot of American mums with blogs and on Instagram and then started following a few British mums but no one completely related to my story. Mainly because Louisa was undiagnosed. I was like a lost child desperate to make some friends and find my new tribe. I felt completely detached from every other parent I knew. In fact, I felt pretty detached from every person I knew. It was such a lonely time. There are days when I still feel lonely on this journey. It is only my husband and my parents who really know the whole story. And I have relied on them so much to help me through some really difficult times. My husband and I are closer than we have ever been since we had our daughter. Every pain and joy I have felt he has felt too. And likewise with my mum and dad. And although we’ve dealt with grief, trauma and heartache fairly differently at times, it is only each other who knows what we have truly been through. Who knows the pure exhaustion of Louisa’s insomnia, who has listened to specialists tell us pretty painful information, who has sat next to her in intensive care and wondered if she’d survive, who has thought about the future and cried with fear, who has cleaned up the poo she on the carpet again…. and again. My husband is my absolute rock. I’d be lost without him. And my parents are just so so special to us.

So, there are quite a few reasons why I am only starting to blog now. Mainly it has been a confidence issue on my part and also a moral dilemma about exposing my daughter and her disability. Louisa cannot speak for herself, maybe she wouldn’t want our journey to be shared. I don’t want to say too much that might be embarrassing for her. And I will never say something that I think is not ok to share. Her wellbeing and safety is at the forefront of everything I do. But, unfortunately, I’ve recently realised that Louisa might possibly never have the cognitive understanding to be bothered about what I say, so as her mother it is my responsibility to ensure anything shared does not cross the line I have created for her and for me. But what I truly believe is, my beautiful and kind little girl, would want me to pass on my experiences to help others. I have to trust my gut that Louisa wouldn’t mind because I truly believe that if she could talk to me with words, she’d tell me to do all that I can to support other parents like me.

So by blogging publicly I feel like I am not hiding behind the shadows of disability. I am not embarrassed of our situation. In fact I am so super proud of what we have been through and how we have dealt with some pretty difficult blows. I am proud of my daughter, my son and my husband. Our little team is my greatest achievement in life. I want people to understand other people like Louisa, and by hiding her difficulties how can I ever expect people to understand?

So here goes. I hope you enjoy and find some of the things I have to say interesting. If you ever have any questions please fire them my way. I love talking about Louisa. She is so awesome!

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