I wish they had told me in antenatal…

…that pregnancies don’t always have the outcome you may have dreamed about.

I don’t mean scare the living daylights out of mums and dads to be, take away the magic of expecting your baby, increase possibly already high anxiety levels, or paint a doom and gloom picture of every possible worst-case scenario.

But a heads-up that sometimes things don’t go to plan would, in my opinion, be helpful.

An awareness, a “oh I’ve heard of that before”, or things to keep an eye on could go some small way in allaying initial fears when your direction of journey rapidly changes.

…that full term babies can be poorly too, and find themselves in neonatal care.

I was incredibly blessed with an uneventful pregnancy, and never for one second did I take this for granted.

I breathed a sigh of relief at my 12 week scan (knowing that some babies, heartbreakingly, don’t make it to that stage), I declined the test for Down’s Syndrome as I knew it wouldn’t change anything for us, and I (naively) didn’t pay much attention on the hospital tour when they showed us the neonatal unit .

I was already 37 weeks pregnant, our baby wasn’t going to be premature, we wouldn’t been needing their services.

How wrong could I have been! (Heidi experienced a HIE event, a lack of oxygent to the brain, just after birth – at 40+11 – and was transferred to NICU to be looked after).

…that breastfeeding might not be an option, no matter how good you know it is for the baby and how much you want to do it.

I had had a pretty relaxed approach in terms of my thoughts on breastfeeding – I wanted to try it but wasn’t putting myself under pressure if it didn’t happen.

Fed is best and all that! 

I sat through the classes with other mums and bumps where we learned the importance of colostrum (liquid gold!), the bonding benefits of enjoying nursing time, the fact that it doesn’t always come easily, and that with the right guidance and perseverance, you’ll get there.

Throw in to the mix though a baby who doesn’t have a safe swallow, hooked up to machines  and being cooled to prevent further injury to their brain, and a mama who is emotional and exhausted –  formula and an NG tube (nasogastric feeding tube) soon become much more important. 

Babies need feeding tubes for lots of different reasons, sometimes it’s a short-term thing, for others, like our daughter, it will be with her for life.

Again, it’s not about causing worry, but having a brief understanding of what they are, before you’re in that situation, may just take away a little worry.

Of course no-one wants their baby to be tube fed, but how amazing that we now have this available to provide essential nutrition and medicine?

That little tube of plastic is literally a life saver.

…that you (very quickly) know what is best for you and your child.

Yes there is lots of great information out there, and some wonderful healthcare professionals, but you are the expert on you, and especially if your child has any additional needs, you will soon become the expert on them.

Mums to-be should be given the confidence to question, the courage to speak up if something doesn’t feel right, and always be involved fully in every decision made regarding them and their little one.

…that you may not feel a whoosh of overwhelming love  of suddenly being a mum (or dad) straight away.

As an avid fan of One Born Every minute, and a reader of many a pregnancy magazine, I was ready and waiting to feel instantly like a mum, to be transformed into a maternal super-machine, from the second Heidi arrived.

It didn’t happen (and 5 years on, I can totally understand why).

I felt numb, then scared, then overwhelmed, then tired, then tired some more, but I didn’t feel “like a mum”.

I got hung up on this for a bit, and remember talking to my own mum about it.

She talked sense – it doesn’t happen like that. It takes time, hormones need to settle down, and when you have a poorly baby, you have so much else going on.

But you are a mum. And chances are you’re a bloomin’ good one.

…that however you’re feeling is ok. Social media has its place, and there can be some real positives from it, but there can sometimes also be an unrealistic portrayal of life.

New mums who ping back in to shape, babies who sleep through the night from day dot, tidy houses and immaculate hair and nails.

People rarely post the bedraggled selfies of when you’ve done your umpteenth nappy change of the night, the snap that shows you haven’t slept or showered in days, or the picture that points out tears of sadness or worry that sometimes catch you off guard.

These feelings are ok. They are “normal”, especially if your baby has been or still is poorly.

How you feel is valid, and isn’t to be compared to anyone else (and if you are one of those immaculate mums and that’s your thing, then of course that’s fine too….I’m just a tad jealous!).

…that you are way stronger than you ever knew you could bem even if you don’t always feel it.

You may have wondered if you were up for motherhood, you may have questioned your parenting credentials, but once you become a special needs parent then this is ramped up to a whole new level.

Can you do it? Are you cut out for all this?

What if your baby would be better with someone else?

Well you can do it, you will do it, and you will find your way.

It’s sometimes a bumpy road, but it also can be a marvellous journey, and leading on to my final point

…you’re not on your own.

The early days of having a baby can be overwhelming, and sometimes lonely.

I hope that everyone knows they aren’t on their own.

There’s lots of support out there, for whatever your circumstances may be, and there is nothing wrong with sometimes shouting out for a bit of a helping hand.

Daddy’s Boy

In the special needs world behind most family’s people view the woman as being the main caregiver. But in my case things are quite different.

Although I do a lot for my son as far as scheduling appointments, making sure he has the supplies needed to care for him and everything else needed in his everyday life.

My son is truly a daddy’s boy. He prefers his Daddy over any and everyone.

And his Dad prefers him too. That’s his very best friend.

Sometimes I find myself just sitting there watching them as they bond with one another.

He understands Jaylen and Jaylen understands him.

Although its crystal clear to see that Jaylen run the whole show.

My husband likes to make people believe he does.

But the reason you see Jaylen when you see him, is because Jaylen insists on being with him.

He wouldn’t have it any other way and to be honest his Dad wouldn’t either.

 I remember one day I asked my husband how he felt about having a son with special needs.

His response was I feel like any other man with a son. I’m happy to have a little me.

His title as my son means more than any diagnosis.

His diagnoses don’t mean I can’t teach him the things I know.

And to be honest I’m happy to have a son that can teach me.

And I can honestly say that they have taught each other so much.

Together they have hit homeruns, they have participated in races and most importantly they have learned to love each other in a way that no one seems to understand but them.

Our son has never said the words I love you.

But if you ever see the way he looks into his Dad eyes the words aren’t needed for him to know that.

I’m thankful for the relationship the two of them have.

Although sometimes it makes me jealous it also brings me peace knowing that they love each other the way that they do.

Body awareness and body proprioception-why is that important?!

Envision someone strapping you into a hang glider and asking you to jump off of a cliff? 

Of course, you’ve seen it in the movies, you have a good idea of what it should look like, but you’d definitely perform better had you completed a couple of practice runs prior to that event, in order to be familiar with what it feels like.  

What does it mean? 

Body awareness and proprioception are integral to know where one’s body is in space relative to their surroundings and which part of one’s body should be activated in order to move within that space.

This information is obtained from numerous environmental and sensory factors. 

From superficial to deeper layers, there are skin, joint, muscle and brain receptors that sort and process all of that information. 

If this information is limited by weakness or tightness, some children may not experience movement as frequently, in its fullest ranges, at a variety of speeds, or in a variety of positions. 

As a result, their active movement may be impacted.

What can we do?

Parents and therapists use massage, ball pools, weighted blankets, vibrating toys, and variable sensory materials to provide that information to a child’s body.

In addition, active movement in space such as gentle rocking, swings, and balance boards also provide vestibular stimulation, which is another piece of information that can stimulate the brain and facilitate movement. 

We are moving beings in an ever-changing world. 

I highly recommend exposing any child to a variety of positions and a variety of sensations in order to stimulate the body’s sensorimotor system and to help them assess where they are in space from that basic information. 

Why is it important? 

If a child does not have enough body proprioceptive awareness they may feel like they’re falling in space, or dangling 20 feet high on a ledge. 

As a result, we may see quick, jolting, bursts of movements against a surface, or even a person. 

These experiences can accompany feelings of angst and stress and may predicate socially undesirable behaviors. 

It’s calming to have a solid sense of where one’s body is in space and how to activate one’s body to stay in that space is integral for balance, coordination, and gravitational security. 

THEN, we move on.

Any or all of the above sensory strategies can provide important information to a developing mind in order to improve body proprioception and yield many benefits. 

It’s a new beginning to a new year.

Therefore, I’ve decided to approach active movement in space by starting at square one- at this point in time, I’m sure you would concur that one must know where they were, and where they are, to plan their next move!!

Could I be prouder? Nope, I think not

I may be a little bit biased, but I am unbelievably proud of this remarkable little human that is my son; and I have absolutely no doubt that every other parent feels exactly the same about their child(ren).

But hear me out. 

Like any parent, I look at my son and wonder what I must’ve done in a past life to deserve such a beautiful, precious little person in my life.

For parents of kids who like my boy are life-limited, every day takes on a much more poignant need to hold on to every moment.

Every cuddle, every touch of our children, every moment becomes treasured.

Less than 16 weeks ago I had to stand by helplessly as the nurses and medics fought to save my sons life.

For two weeks we faced every parents worse nightmare and everyday our boy proved that his desire to live was stronger than the infection threatening to overwhelm his body.

So for us, while lockdown 3.0 isn’t what any of us wanted, it was expected and actually is quite precious.

Because it allows us time with our son that we would otherwise miss.

After a not-too-nice day working from home, I managed to carve out 40 minutes this afternoon to spend with my boy when it was just the two of us.

His class are learning about seeds, how plants grow and about insects this term.

So we potted up a couple of houseplants, planted around 15 garlic cloves, and potted up Sam’s avocado (that we originally started off in lockdown #1).

To say he was thrilled by how that plant had grown would be an understatement!

It didn’t just cover an aspect of home-school for the afternoon but gave us precious time together.

Sam absolutely loves lockdown.

He is thriving on having both of us with him daily.

Yes, he misses his friends and teachers – his lovely class teacher video calls him every week which he loves and we keep in touch with his friends as much as possible.

But far from struggling, he is developing at a rate of knots.

This utterly remarkable little boy is the reason I get up every day.

To look at him now you’d never believe we were minutes away from losing him in September… like so many of his friends my boys ability to bounce back never fails to amaze me.

My miniature miracle

On New Year’s Day as my partner and I unwrapped birthday gifts and enjoyed our son’s second birthday celebrations, I couldn’t help but ponder how differently our lives almost were two years ago as he clung onto life by a thread. 

Joseph was born on New Year’s Day 2019 in very poor condition.

During labour he sustained a grade 3 Hypoxic brain injury, causing multiple complications and disabilities. 

When he was born I remember being absolutely desperate for answers, for any scrap of information that medical professionals could give that would indicate what Joseph’s future would look like.

Much to my frustration the only answer they were ever able to give us was ‘we have to wait and see’.

It felt like torture, like his future – our future was hanging in the balance.

I have never experienced such profound feelings of helplessness and lack of control over a situation.

I would sit and wish that I had a crystal ball so I could see how things would pan out. 

We did everything we could to remain positive and hopeful for Joseph and threw ourselves into enjoying everything we could.

I could not have done so without the support of my partner Barrie, who was and still is my rock through it all.

I also couldn’t have had the strength and resilience during that time without the love and help from our family, friends and the huge team of medical professionals that have become so embedded in the fabric of our lives that I can barely remember a time without them all. 

Over the last two years Joseph has surprised and amazed us time and time again.

He is now doing things that we never knew if he ever would.

Each time I see my miracle boy learn something new or meet another milestone, my heart soars and the pride and gratitude I feel reminds me why we’re not supposed to see into the future. 

If I could have seen what was to come, it may have saved me some sleepless nights, endless worry, grey hairs and frown lines but it wouldn’t have been anywhere near as special. 

We still very much live with the ‘wait and see’ but what I have learned in the last two years is that whatever happens or doesn’t happen, we can handle it together as a family. 

I’ve learned that I don’t need to know everything that’s around the corner.

I’ve learned that I am strong enough to handle curveballs.

I’ve learned to love each new thing, no matter how small.

I’ve learned to cherish those little things that others so often take for granted.

I’ve been given new eyes with which to see. 

I feel incredibly lucky to have my son, because on New Year’s Day 2019, a miracle happened and he was given a second chance at life. 

When PTSD arises…AGAIN

I have been very open about my PTSD through this journey.

I feel that it is important to help other parents understand that it is normal to have PTSD.

It’s normal for parents to stress or relive the trauma they have endured.

For me, it’s in the form of worry, confusion and nightmares.

This means that even though I’m sleeping, the dreams I am having are so stressful I often wake up tired.

I went quite a while feeling good and life wasn’t so stressful.

I thought “maybe this is the light at the end of the tunnel.” As quickly as I thought that BAM something comes up that spins me backwards again.

That “BAM” was an intense surgery that caused Sawyer a lot of pain.

He spent 5 days in the hospital in extreme pain and came home in pain.

We have been up every night from one to to two hours, sometimes more depending on pain and nausea.

Sleep deprivation is hard enough as a parent but when you combine that for weeks on end and playing the game of cat and mouse, it’s a lot.

It increases depression, anxiety and overall feeling of being down.

These things compound into doing things that make me feel better in the moment such as spending money or eating junk food.

They do not make me feel better overall.

It’s a nasty spiral that I suspect a lot of parents of children with complex needs go through.

We are in the weeds of a very tough season. I know things will improve.

I know that he will begin to feel better which means he will sleep.

It’s hard to imagine that right now when we are in survival mode.

I pour my heart into this blog not to make people feel sorry for me, but for people to understand what goes on in the mind of a full time complex care mom.

Even though there are times that aren’t quite so hard as now, the anxiety and stress are still simmering under the surface.

Moms and dads tend to carry battle wounds and it’s not often we share them.

We feel as though we need to be strong but it’s ok to share our weaknesses.

It’s ok to admit you need help and it’s ok to ask for help.

I hope that all parents reading this will give themselves grace.

YOU are doing an amazing job. YOUR CHILD APPRECIATES IT!


Ever since my son was a few months old and up until now all I can remember is completing questionnaires.

It was something I hated doing because it always made me realize the things my son was not doing that he should be for his age.

Every time I filled one out it put me in a bad space.

There were many times I cried as I filled it out. It made me feel like the things he was able to do was not enough.

Although he was able to do some things, they said he would never be able to do.

Sometimes there were sections I would not even complete.

I would just put in big words that the section did not apply to him.

The other day while completing a questionnaire for a service I am trying to get in place for my son they were several sections that did not apply to him.

I could not write in big words that it did not apply to him because I was doing it on the computer.

I could not move forward on the computer without answering the question, so I had no choice but to answer it.

So, as I answered questions, I was also able to leave comments in the comment section.

As I completed the questionnaire, I realized that my son has his way of doing things that they asked me.

And they would not understand because they are not around him everyday to see that.

One visit cannot and will not determine what he is able to do.

So, I decided that I would use the comment section to explain to the best of my ability my son way of doing things.

Like how he does communicate with those who he is familiar with versus people who he barely sees. 

Or how he can go get exactly what he wants instead of asking us. (He is nonverbal)

This time around I was not sad or in a bad space while completely the questionnaire.

I felt good because I know that there are plenty of things my son can do even if it is not done the way we do things.

And we do not teach him how to do things his way he just does it.

The International Day of Education in a global pandemic

The third International Day of Education (January 24) will be marked on Monday 25 January 2021 under the theme ‘Recover and Revitalize Education for the COVID-19 Generation’.

This day, celebrated globally, shines a light on the need to create and sustain educational opportunities for every child, and for these opportunities to be lifelong.

When it adopted the 2030 Agenda for Sustainable Development in September 2015, the international community recognized that education is essential for the success of all 17 of its goals.

Sustainable Development Goal 4, in particular, aims to “ensure inclusive and equitable quality education and promote lifelong learning opportunities for all” by 2030.

Here in the UK, we might think that this is an aim that is already long since achieved, however the challenges of the COVID-19 pandemic have laid bare inequalities in education provision across the country, particularly for children with additional needs and disabilities.

A recent report by the BBC highlighted this, telling the stories of families who had found that accessing their child’s basic right to an ‘inclusive and equitable quality education’ was proving to be a difficult, if not impossible, process to navigate.

Mother of two Jen Smith from Bristol has spent the last two years in a legal battle to get an EHCP (Education Health and Care Plan) in place, as well as an education provision at a specialist school in South Gloucestershire, only for school to now largely be closed due to lockdown.

Another mother, Ramya from Swindon, said her autistic son is having extra medication for anxiety due to lockdown.

She commented; “I have a child with an EHCP who already missed most of year seven and eight and it’s taking the first term of year nine to get him settled into a new school that could meet his needs. Now that we’ve just gone into lockdown there’s no guarantee that he’ll get a place.”

She said she was waiting to hear back from her son’s school and things were “up in the air”.

She added that; “We live in an overcrowded flat and we don’t have the space to really properly do home learning.”

She also felt that nationally, the system for SEND (Special Educational Needs and Disabilities) was “A mess. We have head teachers who are pitted against the Government and then parents pitted against the schools and head teachers. It feels like a constant ongoing fight.”

Special needs teacher Jennifer Holt, from Huddersfield, says her 10-year-old son is waiting to get an EHCP and is awaiting an autism diagnosis by independent specialists.

He has already been diagnosed with severe dyslexia and dyspraxia.

She said; “Not being able to attend for another probably minimum two months it’s going to make him step back. He is so difficult to get engaged in any formal learning, which the school knows about. He won’t get any formal education at all, he won’t engage in any written work at home, he won’t contribute to any Zoom meetings. He shuts down.”

She said his school class size was small so social distancing measures were achievable.

“It’s so soul-destroying how much you have to fight for this brilliant little person that you’ve got, that you know how brilliant they are and other people fail to, or don’t want to recognise or support them. The feeling of rejection I had was heartbreaking.”

The challenges families face getting ‘inclusive and equitable quality education’ are real, and are experienced by families up and down the country.

This isn’t just an international issue, it’s a local issue too.

As we celebrate The International Day Of Education, doing so in the eye of the COVID-19 storm, but also recognising the inequalities and disadvantages children with SEND and their families faced even before this pandemic, let us use this day as an opportunity to lobby Government on their behalf for real improvements in the educational opportunities offered to them.

As United Nations Secretary-General António Guterres comments; “We must do far more to advance Sustainable Development Goal 4, to ensure inclusive and equitable quality education and promote lifelong learning opportunities for all.”

More information about The International Day Of Education can be found here:

You can find contact information for your local Member of Parliament here:https://members.parliament.uk/members/Commons

When there are no answers

“We don’t know why, I’m sorry”. Have you ever heard these words, or similar?

Our son had the most horrific time in 2020.

He had four surgeries (one planned, three emergencies), several trips to A&E, multiple admissions to hospital, numerous brain CT’s and countless other tests.

He has spina bifida, hydrocephalus and epilepsy.

As part of these conditions, he has a VP shunt which controls his hydrocephalus although it always has the potential to malfunction.

His three emergency surgeries were to repair a malfunctioning shunt.

His epilepsy is wildly unstable.

In saying that, the type of seizures Jacob has don’t cause his brain to be starved of oxygen, which we are incredibly thankful for.

He actually has non epileptic seizures (NES) along with epileptic.

His epilepsy is assumed to be medication resistant and he is currently on three different drugs to try and control it.

While they don’t think it starves his brain of oxygen, we are awaiting an MRI to see if there is structural damage/changes within his brain due to how often he has seizures.

We also have to give him emergency rescue meds if it is prolonged.

Why am I telling you all this?

Well, the point is, our child has changed.

My happy, easy going, enthusiastic and sociable little boy has just changed.

It is so hard to put into words, but he has had a massive regression in almost every aspect of his life.

His paediatrician has known us since Jacob was a baby and I pleaded with her to tell me why our child has changed so drastically.

She very gently said “We don’t know why, I’m sorry”.

That was literally one of those moments my knees gave way and I just had to sit down and breathe through almighty pain.

I’ve also been told that I get “tied up with semantics”.

That’s a fair comment, but a formal diagnosis allows access to the right support.

They have now said Jacob has a learning disability (LD).

As a trained LD nurse, I don’t understand this because he was assessed as being of “normal intelligence” (no insult intended, that’s their language not my own) before he began preschool.

LD is usually present at birth or would at least gradually become apparent.

This has been a sharp, quick and steep decline in how Jacob is able to cope with and understand his world.

When I asked if they feel he has brain damage, I was gently told that the outcome to both is the same and we have to change a lot of things in his life.

Knowing WHY something is or has happened means you can start to formulate a plan to address any issues.

You can also start to come to terms with it in whatever way you need to.

NOT knowing why is like being trapped in limbo, and is totally unbearable at times.

So what do I do?

I give myself permission to do whatever I need to feel better at that time.

Honestly, this can literally be asking my hubby or mum to watch the kids so I can take the time to go upstairs, change into PJ’s and hide under my duvet.

I have Multiple Sclerosis as well, so rest is vital to making sure I am able to function, especially when I am under a lot of stress.

Sometimes though it really is a case of trying to hide from it all.

I also give myself permission to openly and actively challenge his medical team to keep trying to find answers so that we can help Jacob as much as possible.

While we are in this limbo, we continue to love Jacob fully and unconditionally.

We will always accept him for exactly who he is, not for who we want him to be.

He is the most incredible little boy and we are so deeply in love with him!

I try to focus on making memories as a family because all three kids (triplets!) deserve a brilliant childhood no matter what hurdles we have to get through to make that happen for them.