Don’t Stare, Say Hello

This blog for me is something I have been wanting to write for a while. It’s hard to articulate and I have been trying to figure out how to tackle this subject.

It’s hard having a child with special needs.

It’s even harder when you feel pitied or like a circus act.

My husband and I often notice when we are out and about people staring or even worse, giving us the “I feel sorry for you look.”

My son has a feeding tube.

He also isn’t verbal and when we go grocery shopping, he can’t sit in the cart like normal kids.

This means that I am often carrying him and placing him in his special seat to get groceries.

His feeding tube and backpack are constantly attached to him.

He will be getting a wheelchair soon and I worry that the stares will get worse.

So, I began to ask myself, how are we supposed to react when we someone or something out of place?

When we see a child throwing a tantrum in the aisles at a store?

When we see a mom changing a feeding tube in a restaurant?

When we see a child with a ventilator?

Do we look away so the parents don’t feel like we are staring?

These are all questions I have been asking myself when I find myself in an awkward situation.

I think there are many ways to react but the one that I think will fit any situation is to smile.

Smile at the child and say hello. Smile at the parent and say hello. We are aware that our child has special needs, trust me.

I have found that sometimes people feel uncomfortable, they don’t know how to react.

I understand, I was there before I had my son.

I wasn’t sure what to say but now I say hello. I treat that child like I would any other child.

I smile at the parent like I would any other parent because the one thing that parents of special needs want more than anything in the world is for their child to be like every other child.

Special Christmas Books

Christmas time is so magical. Ethan loves this time of year, with the lights and the music. I love making his Christmas as special as possible, because after all we don’t know whether it will be his last with us.

We do lots of festive things together and every year I try to do something meaningful for him.

For one of Ethan’s first Christmas’ my mum made him a book advent calendar. We pull it out every year and each year I add more books to it to keep it exciting.

I thought I would share with you some of the books we will be reading this year and books we recommend you should get a copy of to read by your Christmas tree with a warm hot chocolate or gift to someone you know who would love a special book to read.

All of these books are tailored to our special children in different ways.

I find reading to Ethan is a time when we can escape from the daily grind and head off into our own little adventures.

1. ’10 little elves’. This is the book for our Christmas box this year. We don’t have all our children on Christmas eve so they are having Christmas pyjamas, a book, Christmas t shirts and light up Christmas spinners at the start of December.

This book is about some Elves off on a rescue mission to save Christmas.

This book is great for encouraging number recognition and counting practice. It’s a lovely rhyming story so easy to read.

Ethan loves us helping him to count using his finger to point.

2. The works have a great deal on books, 10 for £10. This is great for creating a cheap advent calendar of books! There are some lovely titles! Some of our favourites are the ‘Dinosaur that pooped Christmas’, ‘Father Christmas needs a wee’, ‘Granny saves Christmas’ and ‘One snowy night’.

The ‘Dinosaur that pooped Christmas’ is a big favourite in our house. We all have a good chuckle including Ethan!

We love stories that get us talking and laughing together!

3. We were recently gifted 3 beautiful Christmas books from an author. ‘The Special Delivery’, ‘The Christmas Next Door’ and ‘Santa’s Wish’. They are all gorgeous with rhyming words to make it flow more. Each has its own special message encouraging us to think of others.

The one that stands out to me is the ‘Christmas next door’. One of the main characters is a little girl called Lily who has autism. It shows her get over excited about her school play.

Lily’s Grandad calms her down and gives her the ear defenders to help calm her. It’s a lovely way to show a child with autism and that they can still take part in Christmas things.

It offers the chance to talk to children about Lily and also for those in similar situations to be able to relate to her.

These books can be found over at owlet press.

4. ‘The Christmasaurus’ is another one we intend to read this year. I’m not sure of Ethan’s full understanding but we have been starting to read bigger books and he seems to be following along and enjoying them!

This story is about a little boy who uses a wheelchair after an accident. It’s nice for Ethan to see children in wheelchairs like him as this doesn’t pop up much in books.

There is also a music CD available which is great for our children who love music.

5. We love all the ‘that’s not my’ books. There is a lovely set available for Christmas. These are all textured which is great for children with sensory needs.

Ethan has learnt to hold his finger out to be able to stroke and touch the feely pages.

6. Last up is ‘The Night Before Christmas’. This book was always read to me and my brother growing up. Our mum read it to us every Christmas eve.

I still remember that now and how much I loved mum bringing the story to life. I have carried this tradition on with my children so we will be reading this on Christmas Eve.

We have a couple of different styles of this book. There is also a pop-up version available too.

We hope you enjoy these stories as much as we do. Let us know if you have favourite stories too!

Will He Enjoy It?

Lately I’ve been feeling a bit more “mom guilt” than usual. To be honest, I think it’s been hanging on since the beginning of the school year.

I know that we all have the feelings of inadequacies and the occasional second guessing in the backs of our minds.

But for moms of children with special needs I think we can be a little bit harder on ourselves. At least I find this to be true in my circle of friends who have children with exceptional needs.

One thing I really struggle with is including our son. Or rather, not including him.

Our 5 year old can be difficult to take places. There are so many things we have to consider when deciding to bring him along.

What’s the weather like? Is it wheelchair accessible? What time of day is it? Will he be able to see what is going on? Will it be sensory overload?

Is there anywhere to lay him down if he needs a break from his chair? Is it a place where he can hum and “chat” without upsetting others? Is there a quiet place to go if he has a meltdown?

If we have to leave early will this ruin it for his brothers? And the most important question of all….will he enjoy it?

This weighs on my heart every single time we decide that maybe the outing isn’t the best idea for him. He’s part of our family but yet he’s not always part of our family activities. And just saying that makes me feel completely awful.

I want and wish so badly that he could enjoy everything with us but that’s not our reality. There have been far too many times that we’ve had to leave somewhere early, or have upset him so much that the event isn’t even worth it anymore.

He missed his first kindergarten field trip to the pumpkin patch.

It was too chilly and rainy for him to participate. He laid on the floor and watched his favorite show during Thanksgiving dinner. He has a severe oral aversion so just sitting at the table around food creates intense anxiety and worry.

He sat in the car with his dad when we cut down our Christmas tree.

It was cold, windy, and definitely not wheelchair friendly.

There are countless activities that we have to weigh the pros and cons before deciding if we should bring him. Oh how I wish it was easy. I wish we could all pile into the car and enjoy a simple family outing, but it’s never that easy.

I want to bring him and include him in everything we do. And when we don’t, I feel immense guilt. I feel like I’m leaving a piece of my heart behind. I feel incomplete, our family feels incomplete.

But I need to put his feelings before mine.

My feelings of guilt and sadness are not more important than his feelings.

If the activity will cause him too much anxiety it isn’t worth taking him just to ease my guilt. If the activity is something he’ll get absolutely no enjoyment out of it’s not worth putting him through it.

If I’m taking him just because I want to make myself feel better…then that’s not a good enough reason.

I still feel guilty when we decide not to include him. I think that feeling will never go away. It’s not easy to take him everywhere we go, but it’s even harder to leave him home.

Dear Tallula-bula

Dear Tallula-bula,

You are the sister everyone would hope for, but only Sebastian got to be so lucky.

You are the sister that makes him laugh when he’s feeling overwhelmed, tired, or in pain.

You are the sister that tiptoes away to make a big heart, cut out and coloured in bright red marker, with an ‘I love you’ message on the back; because Sebastian’s foot got stuck in his skinny jeans and we thought we might have to cut it out, (the jeans, not the foot).

You are the sister that creates the best energy for dance parties.

When you were little, you used to sit on Sebastian’s tray facing him as I twirled his chair around to ‘What I wouldn’t do’ by Serena Ryder.

Now we twirl him back and forth across the room to each other. And Serena Ryder is still one of our favourites.

You are the sister that learned to crawl because she wanted to reach her brother’s glasses and pull them off of his face, making us all laugh together with each no that I said.

You are the sister that said ‘Are you gonna catch me guys?’ wearing your pink piglet outfit during a game of dress up; you waited until Sebastian got a head start, with my help, to starting running away.

You are the sister that helped Sebastian learn how to play games on his eye gaze, so little that you still pronounced his name, “Abees’.

You sit next to him now, so he can ask for help if he needs support navigating his folders.

You teach others how to communicate with him.

You are the sister that thinks drool and reflux is gross, but still climbs up into bed to snuggle next to your big brother for story time, knowing he might do either or both.

You are the sister that invites us to parties in your bedroom, with handmade tickets, even one for service dogs, and special accessible seats, so that we can watch you perform a song about the things that you love in the world: friendship, gymnastics, music, and singing.

You are the sister the loves all abilities soccer because you and your brother get to play on the same team, with the same friends.

You are also the sister that loves your own school friends, quick to explain something about Sebastian to them if they don’t understand, ‘he smiles for yes and puts his eyes up for no.’

You are the sister that I was afraid to have for three years after your brother’s traumatic birth.

You are the sister that let out a loud cry upon taking your first breath outside of my womb, a cone head from all the pushing and getting stuck in the birth canal.

But you made it into the world, so much more easily than your brother. But your life in the world may not always be easy.

You are the sister that sometimes misses out on things because your brother is sick or in hospital.

You are the sister that also knows the hospital so well that you find the fun in each visit; hugging the big, purple Mickey Mouse statue in the cafeteria, every time.

You are the sister that has to calm your emotions so you don’t upset your brother.

You are the sister that feels a weight other sisters don’t feel.

You are the sister that helps your mama when she is tired and weary. You are the sister that loves learning how to help take care of your brother, even though we never ask it of you.

You are the sister that offers unconditional love and comic relief when we all need it so much. I can’t imagine our lives without you.

You are the sister that completed our family.

Love always, no matter what,

Mama Jama

Coping with the Christmas Chaos

It’s Christmas!!  Those two words seem to divide the nation even more than Brexit has, with people falling into one of two ‘camps’…

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

There’s even a Christmas meme for that!

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

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

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

And we’re in nativity season too!

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

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

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

It can all be a little overwhelming for most of us, but for many children with a wide range of additional needs it can all just get to be too much.

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

So, how can we help our children, and ourselves, to navigate a safe route through the festive fun?  How can we all cope in the chaos of Christmas!

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

Here’s a few things we can all do to make a difference:

Visual timetables

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

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

Being equipped – shopping survival pack

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

Ear defenders? Tick. Snack? Tick. Drink? Tick. Favourite toy? Tick. Backup favourite toy? Tick. Sunglasses? Sunglasses??

Yes, they can help reduce the glare of the lights and help children who struggle with having to make eye contact. Tick.

What does your child’s shopping survival pack look like?  There is some more helpful shopping survival information for you here:  https://www.autism.org.uk/about/family-life/everyday-life/shopping-strategies.aspx

Pick your times

If you have to take your child to the shops with you, and you’ve got your shopping survival pack with you, carefully choose when you actually go to the shops…

Early in the day or in the evening if you can, avoiding weekends and days like Boxing Day when the sales start.

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

Don’t forget to recharge

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

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

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

Get support, and get time out

A long school holiday can be really hard work for those of us that are caring 24/7 for a child or children with additional needs.

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

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

Is there someone who could look after your tribe for a few hours while you look after yourself?  Maybe go and get pampered, or go to the cinema or out for a quiet meal with your partner?

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

Hopefully these tips will get you started on your own plan to help you to survive the Christmas chaos…

Each of us is different, so our plans will reflect our differences, but if we put some thought and preparation into this now, we might just survive and get to the other end in one piece!!

Now, where’s that backup Winnie-the-Pooh…

I Was Once Scared of my Child

Can you believe I just actually said that out loud!? I was once scared of my child… what a thing to say, but it’s true. I was.

And I think it’s something most parents of preemies can relate to.

When you first have a baby, it can be scary! But when you have a premature baby that doubles, not only are they small and fragile but they are not fully developed and that’s a fact. Not to mention all the beeping machines surrounding that baby.

When my son was born, I had an 11-month-old daughter already so how to take care of a baby was still pretty fresh in my mind but when it came to my son, I was petrified!

He was 6 hours old when I first laid eyes on him and I’m not sure what I was expecting, but what I saw was nothing like I could have imagined.

I couldn’t actually see his face because of the breathing machines and he was bruised from head to toe so when the nurses asked if I would like to change his nappy, I of course said yes to them because he was my son and that’s what was expected but deep down, I wanted to say no, I wanted to hide away and let them do it.

They were the professionals and were used to these tiny babies, I was not!

I’m sure I was actually shaking when I started to change his nappy, he had zero fat on him and I was honestly so nervous I was going to break him! I had never seen a baby so small and delicate.

The whole nicu experience is one I’ll never forget. The nurses were absolutely amazing but at the same time I felt like I should know exactly what to do because he was MY child. Yet I didn’t, and that scared me.

I remember when he got to a stage where he was ready to start trying with breastfeeding and the nurse coming over with a blanket because he was getting so cold, machines started beeping more than usual, he wasn’t latching and I was soaking him.

We tried it once more and the same thing happened. It’s something I often look back and regret not persisting with but at the time I was so terrified of doing it wrong that I moved on to bottle feeding.

However, that didn’t come without its challenges either!

From day one I loved him more than words could describe but it wasn’t until we came home than I became a bit less scared of him!

Having a premature baby or a baby in nicu changes you as a person, but in the most amazing way.

You are completely thrown in to it all and without question you will become stronger, braver and more confident.

I was once scared of my child but not in a bad way.

As a mother I was scared because of how much I already loved and cared for this little baby and yet I had to watch him fight for his life, but that fear also came with determination, the determination to do anything in my power that I could to keep my child happy, healthy and loved.

A Letter to my Mum

They say that a mother is her children’s first friend, well for me my mum was not only my first friend but she is, to this day, my best friend.

Dear mum, I wanted to write this letter to show you how much I appreciate you.

You have and will forever continue to be my rock. The day I found out I was expecting Ryan you were over the moon, you cried and told me it “was the best day of your life”.

You just could not wait to be a gran to my son.

You looked after me throughout my pregnancy and always made sure I was okay. You made me excited to be a mum. I want you to know that I genuinely could not have gotten through this journey without you.

On the 12th of January 2015, you became a gran for the first time and from the minute you saw Ryan, I knew you had fallen in love. I could tell you were so proud and from that moment, I knew that the bond between you and my son would be something special.

The hospital sometimes became a lonely place. When Ryan was in neonatal, I was in a ward without him. I got to watch all the other mums bond with their babies and I had to watch a nurse care for mine.

I did not feel like I got to properly be his mum, but I understood at the time that the nurses were only caring for him to make him better. You and my dad came to visit me every single day and the feelings of loneliness went away when you arrived because I had my mum.

Fast forward a few weeks on to diagnosis day; The day we found out that Ryan had cerebral palsy.

I came home and I broke my heart crying. You were there to pick myself and Christopher back up emotionally again. You reassured me that it does not matter what diagnosis Ryan has or what a brain scan shows, all that matters is Ryan.

You promised that our special family will always support him through everything, no matter what he needs or what difficulties he may face throughout his life. Mum that is exactly what you have done and what you continue to do.

Mum, thank you for always being there to take over when we are exhausted or for stepping in when things get too hard.

You are so thorough with Ryan’s care, so much so, you were confident that you wanted to learn how to feed Ryan via his NG tube and then his button. That in itself shows you are not fazed by his difficulties.

I also want to let you know how grateful myself and Christopher are for allowing us to have time to still be able to grow up.

From the beginning, at the age of 21 to today, being 25-year olds, we have still managed to socialise and maintain relationships with friends. That is because you have given us time to ourselves by watching Ryan overnight each Friday.

Finally, I just want to say thank you for loving my son unconditionally. I love seeing the look in his eyes when he sees you. I love the sound of his laughter when you give him a kiss and call him your “handsome prince”, also the smile on his face when he is around you.

You were made to be his gran. I honestly hope that I am the mum to Ryan that you are to me because then I would know I am doing the best I can do.

Things That Keep Special Need Parents Up at Night

Trigger warning: Discussion of death and anxiety.

The downside to my daughter being well and back at school is that I am granted more time to think. I often feel like my mind is trying to process 1000s of thoughts at any one time.

Sorting each thought and trying to put it away into a box. The problem is that sometimes those thoughts don’t want to be put in a box or are too big for the box intended.

I am talking about some pretty negative stuff.

I am talking about the stuff I usually try not to talk about. I am talking about those really troubling thoughts that keep you awake at night and leave you exhausted the next day.

You see, I worry A LOT about death. Humans are aware of their own mortality and as such try hard to have a life full of enjoyment, great experiences, and value; and that’s great. But for me, this awareness of mortality renders me full of anxious dread over what could or will eventually happen.

My main worry that I agonise over is – would it be best for us (parents) to go first, or her?

We are fortunate enough to say that our child is not life limited and is expected to live a relatively normal life span. However, a huge caveat to that is that she is prone to chest infection/pneumonia, and also uncontrolled prolonged seizures.

It terrifies me that one moment someone could be there, and the next they are not. Each chest infection warranting antibiotics fills me with concerns about her developing an antibiotic resistance and one day acquiring sepsis from us being unable to stop infection.

I worry about a routine hospital procedure going wrong, a sedation sending her heart rate too low.

I think about seizures and how we’ve had a year of ambulances, oxygen and rescue meds. Every cannula or blood test is a further reminder of what can go wrong and causes anxious trepidation.

I remind myself continually to remain in the moment, to take joy in our current existence and to be grateful for every well moment we spend together

But it’s always there at the back of my mind.

It is a tough thought to file away because so much of our life is centred around hospitals, clinics, procedures, medicines and so on. A stranger cannot look at us without immediately thinking of “medical” issues… they see orthotics, tubes, a wheelchair. Everything about our being seems to scream out “ask us about what’s wrong”.

Today my chest feels tight and I am struggling to distract myself from the question “would it be best we go first, or her.” She has become our entire world, she is all I know and is what I think about day and night. When she’s not there she’s always on my mind. It doesn’t bear thinking about her not being here.

But the other option? Where would she go? Would she understand where we went or would she think we abandoned her? Would she be happy and safe? Who would look after her? Would they do it as well as we do? All that matters is that she has a great life and it pains massively me to think about us ever being apart.

I wonder what other people in our situation feel like and if they have any sort of contingency plan in place for such thing?

I wonder if by worrying so much I am missing out on the present, which actually does have a lot of amazing positives. I don’t ever want to be complacent, but at the same time worrying to the extent that I do is having a big psychological and physiological impact on me.

I wish I could just not think about what COULD happen and work on what I actually can control. Sometimes the worry is so exhausting that I have to do the bare minimum to get through the day. Other days the worry is so intense that I burn out by distracting myself with tasks.

Recently it has manifested itself in me having more episodes of being very angry and irrational… for which I later on regret and feel ashamed and silly for. It’s something I am working on every day and I hope that by acknowledging it to you all on here it raises an awareness of a hidden strain in our lives.

I wonder if this post will resonate with a few who have felt or feel similar to how I do.

I recently found myself frantically attempting to declutter my unworn clothes through a fear that even when I am gone, I will become a burden. I know how ridiculous that sounds, I really do.

Try living with it in your head 24/7! One big internal altercation of the side of me that is rational and enjoying life, and the side of me that is panicking about the future.

It makes me wish I could be more like my daughter, who takes everything in her stride and very much lives in the current moment. She doesn’t need to worry – she has us doing that for her – I take some comfort in that.

We recently had a trip to the city walking round shops. My anxiety had peaked from a stressful journey there whereby I got lost several times and started to panic. The lighting in the shops, the tannoys, people coughing around me – all too much. The city could either have been viewed as vibrant, energetic and bustling, or how I saw it – utterly terrifying and something to be avoided.

Why had we come here?

My anxious ways had caused me to quite urgently need a wee (tmi sorry!), so I rushed to a nearby fast-food chain. The door was locked, someone was in there. We waited, and waited.

I suddenly recalled that a few months ago in this exact venue a mother and severely disabled daughter had been attacked by two random strangers in a targeted attack. I won’t go into details but I remember reading it in the news and crying silently to myself about how scared they must have been and how cruel the world can be.

Up on remembering this I felt this overwhelming compulsion to get out. We rushed out of the building and I took a deep intake of breath. Relief.

A stranger appeared in Amy’s face loudly shouting hello. It immediately scared me and I pulled her chair back as he was far too close. People don’t always respect boundaries when someone is in a wheelchair – they forget that she can’t back away when someone is too close.

He seemed to just be a friendly man being nice to my little girl. I asked her if she wanted to wave and the moment ended.  I was being hypervigilant. My fear of losing her and my fear of dying had caused me to see everything as a red flag or glowing beacon of danger. The day did eventually get better and I did calm down.

We had a lovely time.

So, I don’t know. I don’t have an answer to any of those questions. What will happen will happen.

Whomever is involved will cope – I already know what a resilient bunch we are. I might not be able to train her up on how to become independent like a parent of an able-bodied child would… but hopefully I can instil in her confidence in herself, knowledge of how loved she is, and for her to cope in the face of adversity.

I manage somehow, to hide my fears from Amy. I want her to see mummy happy and positive because I want that to be how we all feel. It can be very draining like you’re putting on an act, but it’s what works to get her falling asleep feeling safe and loved. What more can a mum ask for?

Mind in Overdrive

This is something I wrote when I was pregnant and wasn’t confident enough to share at the time!

I now have a beautifully healthy baby girl and there was no need for me to put pressure on myself, but I did and I want people to know it’s OK to feel worried and apprehensive.

Someone said to me don’t be one of those pregnant mum’s that won’t lift or move anything.

Now to them it’s probably looking like I’ve over reacted to this comment. But if they knew the feelings inside of guilt that I could have done more for Ethan, or that this time this pregnancy is even more special than anyone realises then maybe they would understand more.

Well do you know what I have been so totally scared this pregnancy that something will go wrong and that I won’t ever actually get to hold my baby girl or that I won’t do a good job again at growing her properly that actually I am doing all I can to protect my princess while I can.

Now if that means being extra cautious and following the rules to ensure her pregnancy is a long and fulfilling one, then so be it.

I know deep down that I didn’t cause Ethan’s problems but I can’t help still blaming myself thinking that it could have been something I did while he was inside me.

I didn’t have a stress-free pregnancy with Ethan, in fact it was quite the opposite.

I was in an incredibly stressful and emotional relationship which caused me to put a lot of stress on the baby. I was threatened and abused and had pre-natal depression. Something I don’t talk about openly. Now there is no proof that this caused Ethan’s genetic disorder, but there’s also no proof that it didn’t either.

I have put a lot of pressure on myself this time to create a baby who doesn’t have to suffer like Ethan does daily.

Now if that means I am one of those mothers who listen to all the advice about being good and not putting strain on my body, then do you know what I am one of those mothers.

I will do all I can to ensure that my baby girl has the best possible chance to grow and develop to her full potential.

The stress and worry through this pregnancy have eased a lot but will never go away.

I can never fully relax knowing that whatever happens won’t be down to something I have or haven’t done.

I was careful with Eth apart from the stress element yet things still didn’t form properly for him. So, this time being extra cautious for me is even more important. I want to know that I’ve done all I can to help give my princess the best opportunity.