Category: Parenting

The Heart or the Head

Freddie got hooked up again today for another ECG before we got the results of him wearing a heart monitor for three weeks. That was eventful. For a boy who loves to press buttons, we weren’t sure how many of the readings would be real and how many would be Freddie just pressing the button. (He is only smiling because Ollie gave him his phone. He hates the sticky pads so anything to distract him.)

 

 

For two years now he has been experiencing, what look like, absence seizures. His Neurologist isn’t convinced because although they look like it and sound like it, they don’t happen often enough. The thing is though, nothing with Freddie has ever been straightforward black and white. I’m grateful it’s so sporadic and not affecting him all day every day but we really do need to find out what is going on. The parts of Freddie’s brain which haven’t developed typically, mean that we have always been advised to look out for epileptic activity. It’s so hard to know what we are seeing.

Anyway, the Neuro wants to rule out anything untoward going on with his heart before we have any more discussions.

Obviously, we don’t want him to be having absence seizures but if that’s not what it is. Then what’s going on?

So, after a fairly frustrating appointment (that’s a story for another day) cardiology are as certain as they can be that it’s nothing heart related. That’s a relief but now we continue without an answer. Back to the Neurologist we go. xx

 

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Special Education V Mainstream. The School Report.

The end of term brings the school report.

Freddie and Bella’s both came home in their school bags today. They are poles apart in style and length. This is Bella’s first one and focusses on her reading, writing, maths and science skills plus all her likes, dislikes and personal skills including communication, physical development and social and emotional development. It’s quite comprehensive for a five-year old.

As I was reading through I was immensely proud of how well she has settled into school and it is heartwarming to know that although she was pretty nervous about things in the beginning, she has grown in confidence. At the start of the year, she was a little apprehensive about what the other children would say about Freddie. Would they ask why he was different, would they want to know why he didn’t go to their school, how would she explain things? We had some really grown up conversations last September in order to prepare her and build her resilience. As it happens, unless she hasn’t told me, no-one has asked anything yet. At least nothing of major significance. She was already friends with half her class, many of whom have grown up always knowing Freddie. The rest just haven’t asked. I know one day she will be faced with uncomfortable questions but I have tried to give her the tools in her ‘language’ and at her level of understanding, to help her respond with confidence and courage. Taking all of that into account plus the challenges we often experience at home and my concerns over how she is dealing with them, her report was fantastic. It’s given me confidence that all the talking we do is paying off. Her report said that she is developing compassion and compromise (i don’t see much compromise our end mind you), an exceptionally caring attitude towards others and can be relied upon to involve others. Inclusivity is a really important aspect of life for us and it was amazing to read that she carries this through in her approach to others too.

The report did also say that she ‘occasionally attempts to teach the adults a few things along the way’ which just made me crack up. That’s my girl. ‘Strong willed’ was another description of her personality. I just don’t know where she gets it from???

It’s hard not to compare the two reports. It’s hard not to read Bella’s and wonder what Freddie’s would have said if he was just leaving mainstream year 2 and if he didn’t have a severe learning disability. As the years go on I am able to compare less but it still stings at times.

The days before they started to annoy each other. They were still best buds here. 

Freddie can’t write his name, only the first letter and can’t read or write but he has bags of personality. His report said that he is a popular member of the class. We all want to be popular, right? He has improved in all areas of self-help (not too sure we are seeing this element in its full glory at home mind you) and he LOVES ball games and PE. He meets all challenges with enthusiasm and strength.

Even with all he contends with and all the challenges he faces, he still has enthusiasm and strength. Wow. 

They said he has a wonderful nature and a fantastic sense of humour. He does. He really does. His teacher said he has grown in confidence and she is sure his transition to upper school will be successful.

Considering how things could be and considering all of his special needs, he is a total trooper and his personality shines through. It’s unlikely we will receive a school report detailing his academic achievements but our main goal is for him to be happy, content, have some independence as he grows and have a purpose in life. I’m feeling confident that he will excel in these areas. I’ve always believed anything is possible and this is how I will continue.

Before children, I thought we would have the typical life. Get married, have children, watch them grow, go to Uni or straight to work or maybe travel. Then we would travel more and perhaps help out our children and maybe even their children. Bella and Jago will no doubt follow a path similar to how we imagined but Freddie won’t. It’s not always easy to accept but ‘it is what it is’ and whatever our children, all three of our children, achieve along the way I know we will be proud. As long as they are happy and having as much fun as possible along the way, it’s really all I ask for. xx

 

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Getting Poo In My Hair…

Getting poo in my hair was certainly a highlight today.

Grim.

Apart from that, Freddie had an orthotics appointment and hurrah his feet have grown a little so some funky new shoes have been ordered for him. Jago came along for the ride and all in all it went fairly smoothly.
Freddie is always so super excited to go to school but for some reason he wasn’t this morning. Luckily, school is only five minutes away from the hospital but he was really sad and clingy when we got there.

I felt really sad having to leave him.

It’s so unusual for him to react that way. The great thing was though, that one of his TA’s came to collect him from reception. She scooped him up and cuddled him so he knew he was safe. She made him laugh a little. She told him what she had ordered him for lunch but asked if he wanted something different. They were going to go to the kitchen to choose again. His school teacher and the team around him are so genuinely caring and loving that although he was crying, I knew he was loved and seemed a little happier when she said he could get all the balls out to play with. He said he loved school when he got home. Phew. xx

 

 

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Happy 7th Birthday To Our Biggest Little Boy, Freddie.

Happy 7th Birthday to our biggest little boy, Freddie.

From being told at my 20 week scan that our baby’s brain wasn’t developing right. To the endless tests and scans. Being told no-one had any answers but being offered a possible termination, by panel, up to 39 weeks. Freddie was born, totally spontaneously, at 35 weeks.

We were so frightened that he wouldn’t arrive safely that we had no baby stuff at all. Nothing. We didn’t dare buy anything. So, during our stay in SCBU with the amazing staff there, Ollie went shopping. Greeted at the door of Mothercare, I think the shop assistant could see the look of shock on his face and took pity. Freddie was teeny so we needed teeny everything. She took him round the shop and he got everything we needed for the time being including a car seat to get him home. Thankfully a good friend of ours donated their old cot, feeding chair and travel cot. Phew. Ollie got the whole room ready and all the furniture built in time for his arrival home.


Even after all the scans we have, over 15 weeks, we never found out if our baby was a girl or a boy. We wanted to have just one surprise and surprised we were. Ollie was due on a plane that weekend for a wedding and my mum was away on holiday. She said as a joke, don’t go having the baby will you. She thought Ollie was playing a practical joke on her when he called Greece to tell her I was in labour. She managed to get on the only flight of the week out of there and made it back 24 hours after he was born.


With all the conversations we had with the professionals around what Freddie was unlikely to achieve, he surprises us each and every day. It hasn’t been easy and it will continue in that way but boy do we love and adore him. I don’t really believe in using language like ‘fight’ when talking about the challenges we face but in this instance, I will say that I have fought so hard every step of the way for my little teeny weeny baby. Right from 20 weeks pregnant to the grand age of 7. He might have nearly driven me crazy this week by saying “Mum” about 3 billion times (on top of the 2 billion Bella and Jago have said it) but what a star he is. We love you Super Fred. Xx

He was soooo excited when he saw his birthday gift. Ollie is pretty chuffed too, especially as he spent a few hours putting it together in darkness last night to be ready for this morning.

 

 

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When You Have To Admit You Are A Family With Special Needs.

This might seem a weird thing to say. Especially when it is clear that Freddie has Special Needs. I’ve always known this, even in the early days of denial. Of course I have. This is different though. This was the moment I realised that Ollie and I and Bella and Jago also have additional needs which require support.

Our needs are not due to a disability but they are as a result of Freddie’s.

Up until now, everything I have been working towards has been focussed on advocating for Freddie. Getting him everything he needs in order to fulfil his potential and happiness. Advocating for him is something I will always do. I have also been working  hard on  my resilience the past few years, in order to keep going and thinking about how to support Jago and Bella as they grow. That that isn’t enough anymore.

I’m not shy in asking family and trusted friends for help or a favour but this is the next level up. We have always coped well in most areas but life is changing. Things are supposed to get easier as your children grow but we are in some respects, finding the opposite. I am having to change my viewpoint on how we are coping. Physically it is getting more challenging for me and for Ollie too to some degree. Plus, I admit I get freaked out at the thought of taking all three somewhere, like the park, on my own. To the point where, I rarely do. It’s hard work with the extra support that Freddie needs. I see other Mum’s out there with their three children  and feel like a bit of a failure that I don’t do that with ease. However, the Mum’s I’m looking at, in general have three neuro-typical children in tow, so I try not to beat myself up for it.  I’m getting better at it as Bella and Jago are becoming older and more self-sufficient so that’s a positive.

We are also tied to time with Freddie’s school drop off each day. This impacts what out of school activities Bella can do and those which Jago will want to do. The Mummy guilt always steps in here. I am doing enough for each child? With thanks to a good friend, Bella gets to go to gymnastics once a week so the pressure is off for a little while. What happens as she gets older and wants to do more? Weekends are a challenge with Ollie’s work schedule and Freddie being at his most tired and challenging on a Saturday.

All these little things that seemed a normal part of family life (in my vision of what I thought it would look like) I used to take for granted. The things about raising children that never occurred to me are starting to show up.

These are just a couple of small examples of the challenges of wanting to and trying to run a typical home when the family has additional needs. They are minor when read in isolation but add those to all the challenges on a daily basis, both physically and emotionally, including all the meetings/therapy/behaviour challenges/paperwork/organising etc it all gets so overwhelming.

I have always been determined not to allow Freddie’s disability to define me or us as a family and this is a belief I still hold. What I’ve realised though, is that in order to keep to that way of living as closely as possible, we need help. We are not a typical family. Freddie needs a PA, he needs respite and we need respite. Bella and Jago need respite. We need it booked in and organised. I need more physical help when Ollie is working the incredibly busy summer season at work. I don’t do failure very well and I’ve always had the determination that I can achieve anything. These wobbly times have been rocking that belief a little. I haven’t liked it. I also don’t do being out of control very well. So, with the things I can no longer cope with, I’m taking control in another way. Admitting we need support and going and getting it before it gets too bad. It hasn’t been easy to admit I can’t cope. It’s taken being close to breaking point and ‘encouragement’ from my family and friends little by little to get sorted.

Note to self: don’t be so stubborn and take more of my own advice.

xx

 

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Bella Is My Superhero

My children surprise me all the time. They infuriate me, drive me bananas, make me laugh, swear and cry but I love them all with all my heart.

Even during the toughest times, there can be shards of light. 
The past few weeks/months have been, at times, totally exhausting and mentally draining for me and Ollie. We have been at breaking point often.
Freddie has been experiencing some challenging behaviour, pretty close to what looks like a panic attack. Other times, he is just screaming blue murder. Most mornings and most evenings. He never does this at school and rarely in front of anyone else. We can be with friends and they don’t see it and he doesn’t do it to his Grandmas. This is a huge positive but also frustrating that no-one really sees what we deal with.
We are taking to school, our GP, Skybound and a specialist Paediatrician to see what we can do to help him. And us.
However, a really big concern of ours is how it all affects Bella and Jago. It takes time away from them. It causes friction and upset in the house and makes us all very tired. Jago is too young to understand what’s going on but these things still affect little ones. Bella on the other hand is only five years old but understands so much more. She says such grown-up things at times that I wonder where she gets them from?

Her words often cause me to silently cry whilst we have our last cuddle at night. I don’t want her to know I’m hurting but the tears just come. Sometimes through sadness and sometimes because of words which are bitter sweet. A couple of weeks ago, after a particularly bad evening, she said “Mummy, I wish Freddie’s brain hadn’t been injured before he was born. Then he wouldn’t scream so much.” Me too. It nearly broke me hearing those words. Her understanding was key. She is so knowing.

We have had some other pretty upsetting conversations about how she is feeling but I’m always grateful we are close enough that she can talk to me. These lines of communication are essential. I hope this will be the same state for Jago as he grows.

You remember I said at the start, “Even during the toughest times, there can be shards of light.” Well, last night we had one of those bright moments.
Freddie was having what appeared to be (most likely was) a panic attack and I was flying solo for bed time. It was horrific but Bella was amazing and Jago too.
After it was all over, Ollie was home and Freddie was calm and happy, we had our last cuddles of the day.
I told Bella what a wonderful sister and daughter she is. How much I appreciated her help and how much I love her. We talked a little and she said “Mummy, I know I can always count on you.” I responded with “Of course. Always and forever.” And then she said “And you know you can always count on me don’t you Mummy? And Daddy and Freddie and Jago. Oh and Teddington, they can all count on me too.”  What an amazing, sweet and brilliant little girl.

Siblings of children with special needs have it tougher than those without, for so many reasons. They struggle with their emotions and feelings but hopefully with the right support we get through it together.
Bella is my Superhero.

When You Teach Your Child A New Swear Word!

By mid week of half term this week, I was totally and utterly mentally exhausted and had massive auditory overload. I think my name had already been said/whined about 6k times. None of them listen to anything I say. By the 8th time of “Please sit down and eat your tea” or “Please take your shoes off” or “Please get out of the bath” or “Get off your sister” or “Give it back to your brother” (you get the picture) I was pretty much loosing it.

To top it off, I’ve managed to ‘teach’ Bella to say bloody. In context. 😬 The words uttered were “Argh, this bloody Lego.”  as a half built something went crashing across the floor. Parenting WIN. Yay, go me. Oh dear! Hangs head in shame.

I wish I was one of those Earth mothers who got the whole week right, beautiful activities suitable for each child and nothing but fun and laughter. The kind who takes photos of their food maybe, for Facebook, or who always signs off with #soblessed. Come on! This is the real world. This is my real world of three children, one with special needs. Laughing, fighting, whining (A LOT), cuddles, tears (occasionally mine) and fun.

There are some fantastic, funny and lovely times but honestly, some moments are just soooooo hard. So hard in fact I decided to read a book I’ve had on my shelf for a little while The Yes Brain Child by Dr Daniel J. Siegel and Dr Tina Payne Bryson. I realised, as I was going through the book, that some of the techniques discussed are tactics I use mostly with Bella and actually for myself in prep for stressful situations, often pretty successfully. However, by Wednesday, I wasn’t in the right positive/resourceful state to access that knowledge in the moment so I had a total parenting fail. The whole day at every turn.
After Wednesday’s diabolical morning, I decided to get straight and start again. I tried the Yes Brain technique with Jago and bingo. It worked. I doubt it will work every time but by the end of this week I am feeling far more in control of myself and able to parent better. Sometimes life just gets a bit overwhelming there for a moment doesn’t it?

The great bits of this week. Bella learning to ride her bike and Freddie being able to participate in this regular family activity. Going to the theatre with friends to see The Ginger Bread Man and the smiles on the children’s faces. A very lovely friend taking time to check in with me, recognising  I was overloaded.
Seeing how pleased my grandparents were to spend a little time with the children. Taking Freddie to a friends party and seeing how much he truly enjoyed himself and how pleased his friends were to see him. It really made my heart swell. He cracked me up at the end. No inhibitions about asking if there was a party bag. Little monkey. I had a really great time with him.  Plus, Jago has taken to calling me ‘Queen Mummy’, got to love a Mummy’s boy. Big bonus at the end of the week, Ollie and I get to have Friday night curry and wine with good friends and the children on a sleepover at Gogoos to give us a nights respite.

Don’t you just love it when you take about ten photos and still can’t get all three to look at the camera and smile. 

Phew. A nice dog walk in between helps to clear the mind. Five minutes meditation in the shower with the door locked each morning and Prosecco. These things all help.

I love my spirited and challenging children. Must try harder to be calmer though. Lack of sleep doesn’t help. Think I might go to one of those strange gyms each week in the run up to the summer holidays where you can just sleep for an hour to prep myself.

Just having written down the good things that have happened this week has made it feel a lot better. If you are having a tough day, write down the good things that have happened and those things you are grateful for. It gives me great clarity.

I hope everyone has got through their half term in one piece. xx

 

P.S.

If you purchase anything via the links with Amazon in my blog posts, I receive a small commission at NO added cost to you. This just helps me a little to maintain the website and continue to provide useful and empowering resources for parents and carers of children with special needs and disabilities. Thank you. x

The Day We Received Freddie’s Rare Genetic Diagnosis

You know that moment when you receive a call from your child’s professional and life is at a momentary stand still? I know you know it. The slight panic, the billions of story lines running at high-speed through your head about why they would be calling you. The fuzzy feeling, slightly sick and hopeful all at the same time feeling. Those are the feelings I had when we went to our first Genetics consultation, when we received a diagnosis and when I got a call from the Genetics team yesterday. Totally out of the blue. Totally caught off guard.

Looking back, when we had Freddie, we were so naive about his disability. Even though we were told at my 20 week scan that our baby’s brain wasn’t developing correctly and we had asked tons of questions and freaked ourselves out by Googling all possibilities, it never ever occurred to us it could be something genetic.

I’m fairly sure no-one had ever suggested genetics, especially because all the tests and scans were coming back negative. That term just wasn’t a part of my vocabulary.

At our first Genetics counselling session, our second child Bella was still a tiny baby. We were asked if we thought she had any differences or difficulties? Was she developing as expected? I can still feel the cold sweat shock as I let those questions sink in. Could it be hereditary? Could we have unwittingly charged ahead with a second child without all the information to tell us if she would also have special needs? From that point on, every milestone she approached was met with caution and relief in equal measure. She was so speedy to walk and talk. She was and still is super independent.

Our two biggest concerns from that meeting were, would Freddie’s condition be life limiting for him and could Bella be a carrier? We would need to know this to give her all the information she needs as an adult to make decisions about having a family of her own.

Our biggest fear is, will a diagnosis come with a life limiting label? I just can’t bare to go there in my head but I am a pragmatic person and I crave knowledge so I need to know. I just don’t want to know.

We had been on the DDD study for a couple of years. To be honest, I never thought we would receive a diagnosis because every other test had come up negative.

The day we received the call from our Geneticist to invite us in to discuss their findings was a shock. I had been in regular contact with them, asking for any result updates. Not because it would change very much for Freddie in the present but because we wanted to try for a third child. This time we wanted to do it with a full bank of knowledge. There were no answers and we were getting further away from the time we would like to try. We took a leap of faith and went ahead. By the time that call came through, Jago was almost 12 months old.

That sick, swishy feeling came over me again. They had a diagnosis.

We then had to wait about three weeks to meet with the Doctor in person at the hospital. I tried so hard not to think about it. I couldn’t change the outcome or our choices so I thought, it is what it is and we will deal with it.

Our Geneticist was fantastic. She was calm and clear and gave us as much information as she could. We had quite a lot of questions but had we had more time, we would have asked more. It was exhausting.

Freddie is Rare.

Freddie has been diagnosed with a rare genetic condition. TUBA 1A. At the time of receiving the diagnosis, there were only a handful of other children known to have TUBA 1A in the UK. A Rare Disease is defined by the European Union as one that affects less than 5 in 10,000.

One of those children was deceased.

I don’t know if that child had other medical issues or not. I don’t know the reason for death. I just know, I now have to try to keep my head when this knowledge creeps back into my conscious mind. Practically talking, Freddie is medically healthy and although there are issues, they don’t have any life threatening concerns right now. That is how I want it to stay.

It is always a good idea to have two of you attend the results meeting. Often what your hear is a version of what was actually said. Thankfully we were given some paperwork and a letter confirming the outline of the conversation. It turns out that Ollie heard something slightly different to me. We were told it was genetic. We were told they had looked at mine and Ollie’s genes too. There were no correlations with me. There were some gene changes in Ollie that Freddie shares BUT they are NOT anything to do with his diagnosis. Ollie just heard the first bit. For around two months he never said a word to me. He spent that time thinking it was because of him. It was only when we read the diagnosis paper together that he realised it was a De Novo change. Occurring in Freddie for the first time. He carried that stress and sadness unnecessarily.

Yesterday, caught totally off guard whilst chatting to a friend, the phone went. It was our geneticist. The slight panic, the billions of story lines running at high-speed through my head about why she would be calling me. The fuzzy feeling, slightly sick and hopeful all at the same time feeling. Those are the feelings I had again. Was she going to say they had found a connection to his diagnosis being life limiting?

Thankfully, the call was to say there have been some more children diagnosed and the DDD Study want to write a paper in conjunction with the various Geneticists around the country. There is so little known and so little literature about TUBA 1A that this would be the first real collection of data and information to help future families. Would we be interested and happy to have Freddie included in the paper? Yes. A thousand times yes.

If this knowledge had been available when I was pregnant with Freddie or when we had him it could have provided so many unanswered questions. If we can help another family in the future not to feel as alone and isolated as we did, it will be worth it.

I still don’t have any answers about Freddie’s prognosis as he marches ever closer to his teenage years and adult hood. I have to just keep everything crossed that as more knowledge is formed, nothing presents itself with a life limiting label.

Freddie Is Rocking The Human Connection

A few days ago, I posted a video on my Facebook page from Special Books By Special Kids. What they talked about immediately hit me. It was about how everyone, no matter if they are neuro-diverse  or otherwise have a desire for connection and community. I shared it because he is a fantastic example of a fantastic human being. He is patient, kind and open.

It really wasn’t until a couple of days later that I was thinking about what his friend/student was doing. He talked about how he was asking questions to which he already knew the answer. Why was he doing this? Chris talked about realising he was doing it to feel a connection. It was perhaps difficult for him ask questions and start a conversation about something in Chris’ world but he knew he could start a conversation with something he know about.

Mum. Mum. Mum. Mum. Mum.

It made me think a little more about Freddie. Anyone one who has ever spent any time with Freddie will know that he likes to talk. They will also know he likes to say their name A LOT. Once he has learnt it, thats it. I often find myself explaining, even when people have known him some time, that he loves to talk but he doesn’t have a lot of language. So, in order to communicate, he uses what he knows, over and over. It’s also how I explain it to myself when he has asked me for the 30th time that day “Where Daddy gone?” when he knows he is at work. The other one is in the car, asking me every time we change direction, “why go this way?” Argh – because its how we get to Grandmas/the pool/a friends house/the supermarket etc. The latest one is shouting at the top of his voice, “Hello Mummy, Hello Daddy, Hello Bella, Hello Jago” all at once even if we are not all with him. My boy has literally no volume control. Ha Ha.

Patience In Bundles

I have had to learn patience in bundles. Imagine being asked the same handful of questions over and over and over again, all day long. It is really hard work and a little bit like torture but I try to smile and answer him each time as if he hasn’t just asked me. I want to encourage him to use his language and increase it, which he is doing slowly but surely. Often though, when he asks “where Daddy gone?” I ask if he knows and he pretty much always does. Then we can start to elaborate on what he knows. I’ll ask him, who does he work with or has he gone in his car or in someone else’s? What colour is the car? etc. Then we can communicate on a deeper level.

Although I know all of this about Freddie and I encourage him to talk, I had never really thought about it being for connection. True connection and what that means to us as humans. I look at how our dog communicates with us with no human language and all the ways we know what he wants or needs. It’s a basic human desire to be connected. I can see that Freddie’s desire for connection and community is huge.

Funny how sometimes you see something but don’t truly see it at first. Freddie is rocking the human connection.

Why We Went On To Have Two More Children After Having A Child With Special Needs

A friend asked me this weekend why we decided to have three children? There was no sarcasm or malice in the question. Just simply wondering and genuinely interested. He knows that Freddie has Additional Needs and wondered how we cope?

Sometimes ignorance is bliss.

When we found out at my 20 week scan that Freddie’s brain wasn’t developing correctly and after all the scans and tests that followed until his pre-term birth, our focus was just getting him here safely. We had no diagnosis, didn’t have a clue what the future would hold and had never really thought about anything genetic. However, we had always wanted two children and I think that because we could ‘hide’ Freddie’s needs when he was a baby and pretend to ourselves that he was going to be ok, we decided to go for it pretty quickly. Living in denial was probably quite blissful at the time. I became pregnant with Bella when he was only nine months old. Perhaps if we had left it longer, we might have made different decisions? I don’t know. It was around this time that the hundreds of appointments and therapy sessions really kicked in. I was one exhausted pregnant lady. We got through it though and were so excited to have our beautiful little girl.

When Bella was around three months old, we were invited to attend genetics counselling. When I look back, we were so naive and innocent and actually right in the centre of total chaos. The Dr asked how our new baby was, did we think she was developing typically and did she have any dysmorphic features? Time just stood still. I can recall every prickle of fear as if I were in the room now. We honestly never considered for a moment that Freddie’s needs could be hereditary and we also didn’t know there was such as thing as De Novo Genetic changes that occur. No-one had ever spoken of this other than the more well known syndromes they tested for regularly. What a shock that was.

We went onto the DDD study and waited.

During this time, I never threw away any of their baby things. Hoarded everything. We were only having two so what was I thinking? I called the geneticist a number of times hoping the results would be round the corner. Nothing. Our main concern was finding an answer to enable us to give Bella all the information she would need for when her time comes to be a mum. If that is the path she chooses. We also wanted (and didn’t want) to know if Freddie’s condition was life limiting.

As Bella was approaching 18 moths, I realised she needed back up. I don’t have any brothers or sisters and as I’ve experienced more of life’s riches and heartbreaks, it would have been good to have that back up. So grateful I have Ollie.

We needed safety in numbers.

I didn’t  want Bella to feel pressure when she is older, perhaps when Ollie and I are no longer here. It’s tough managing these challenges alone.  Although risky, without a diagnosis, we weighed up all the options and all the solutions open to us. After a lot of discussion, we decided to go ahead and try for a third baby. Freddie’s rare diagnosis of TUBA 1A came after Jago was born.

I’m not really sure how Jago will take it if he realises he was back up? I’m hoping he will know he was born from a deep place of love for our whole family unit. He has made us complete and we adore every inch of him as we do Bella and Freddie. We are extremely lucky to have three children. I hope they remain close as they grow, lean into each other and realise they now have safety in numbers.