February 2024 and we’re approaching 4 years since the beginning of the COVID 19 Pandemic. The UK entered its first lockdown towards the end of March 2020. I had to double check that was correct as I couldn’t believe quite that much time had passed.

As a carer I often feel that large portions of time will pass me by in a blur. Sometimes for months on end there will be non-stop appointments, phone calls, emails, applications and so many other kinds of relentless admin drudgery that comes alongside managing the care of a medically complex child within a rapidly failing system.

We all remember what a scary and unprecedented time it was during the pandemic. Many families like ours battled through some extremely tough circumstances, without the appropriate care and support they so desperately needed.

When lockdowns were eventually lifted, restrictions were eased and everyday things slowly started to return to normal, I felt a genuine sense of relief and (I now realise very naively) allowed myself to cling to the hope that things would improve for us.

Things could only get better now surely.

We would have access to the services that had been halted, much needed support would come, access to medical treatment and therapies would be better than they had been for months etc.

Whilst of course there have been aspects of our life that have improved since coming out of the pandemic, I can honestly say that overall, the majority of things have only continued to get progressively worse.

A huge issue that we have been facing for the last few years is being unable to obtain vital medical supplies and medications, as a result of the ongoing global supply chain crisis that began during the pandemic. I have lost count of the medications and supplies that we have struggled to obtain. It seems to be a different item every other week and I live in constant fear of what the next thing will be.

It is absolutely terrifying as a parent to discover that an essential medication is missing from your child’s prescription, even more so when you contact the GP or the pharmacy (praying that it is just an oversight that has been missed) to be told nonchalantly “We can’t get that medication, there is a manufacturing issue”, as if this tiny titbit of information (that was only offered up because you contacted them and asked) is enough for you to stop hassling them and be off on your merry way.

Now, I’m a reasonable and logical thinking person (most of the time), so I understand that some situations are out of people’s control. I have never expected that by some miracle because I’m stressing our urgent need for something, it can be magically conjured up from thin air.

I’m very aware that it is an ongoing, widespread problem.

I’m very aware that it is an ongoing, widespread problem. What I can’t seem to elucidate (despite repeated attempts to multiple professionals and services) is that the thing that I take serious issue with is the complete mishandling of the situation.

If items are unavailable, then they are unavailable. However, the thing that I find exceptionally concerning is that not once during this global crisis, has any professional contacted me voluntarily to check on the welfare of my son in the event of an out-of-stock medication or to discuss concerns I may have. Even in relation to a medication that can cause seizures, respiratory distress and fatality if abruptly stopped. At no point has anybody voluntarily offered any alternatives or suggested a contingency plan going forward should a specific item not come back into stock.

Every single time we have been faced with a supply issue that has eventually led to a solution being reached, is only a direct result of me relentlessly making a nuisance of myself and demanding that someone address the problem (either by trying to source the item elsewhere or failing this, requesting an alternative medication).

This has taken several months in some circumstances.

One of his medications that we are currently unable to source, has been in short supply for some time. I have been trying to work with his medical team to manage the problem since around November last year. I have sent close to 50 emails in relation to this one medication and made close to a hundred phone calls.

I have since discovered (again, only because I researched the medication myself) that this medication that is unlicensed for use in children, has a particularly nasty withdrawal, especially when prescribed long term and my son has been on this medication for around 3 years. Online it was advised that a specific medication can be prescribed when coming off this just in order to manage the withdrawal symptoms.

So obviously I have concerns about this and would like to know how best to manage this withdrawal period that he will have to go through.

I have since spent weeks telephoning and emailing several Doctors, pharmacists and healthcare professionals about this and not one person has gotten back to me with any advice on how to manage this.

I always do the very best that I can to ensure my son has everything that he needs to manage his medical conditions and keep him as well and comfortable as possible. This is becoming harder and harder with each passing year, as the level of chasing, red tape and hoop jumping required for the most basic of things multiplies and the attitude towards you for having the audacity to do so sours even further.

The added workload and emotional toll of it all is a heavy burden to carry, but one that I would battle through to the death if I had to, to ensure that my son’s needs are met.

The complete lack of foresight and concern for people’s well-being from the very people that we rely on is a stark reminder of the state of our health service. Not everyone that finds themselves facing these problems is fortunate enough to be able to advocate for themselves or appoint somebody else to do so on their behalf. I often worry about what happens to those people. Do they just silently disappear into the ether?

This week was the beginning of Joseph’s journey into education and into the big wide world without us. 

Having additional needs means that he is eligible to receive 15 government funded hours a week during term time, within a childcare setting. 

When I was first told about the funding over 12 months ago from the portage service, I was very reluctant to put Joseph into child care so young. 

Before having Joseph, I myself had worked as an early years child care practitioner for many years.

This only added to my worries as I am aware of some of the less than ideal situations/issues that go on within nursery settings. 

With the level of care and medical intervention etc that he needs, I couldn’t fathom how it would be possible for him to be monitored as closely as he requires in such a setting. 

Thankfully we learned of a special needs school and nursery not too far away that seemed like it could be a good fit.

With a nurse on site for added reassurance, a sensory room and hydrotherapy pool, it seemed absolutely perfect. 

It was eventually agreed that Joseph would have a 1:1 with him during nursery hours, provided by the continuing care team that provide our respite package.

This was such a huge relief knowing that he would be closely monitored and supported by people that he knows and that know him so well. 

I began to get excited then as I know what an inquisitive little boy he is and could imagine all the ways in which the experience would benefit him and help him to reach his full potential. 

We fell in love with the place as soon as we visited for a tour, so I was over the moon when Joseph was offered a place. 

For a few months leading up to his start date we spoke lots about nursery in preparation. 

I was unsure how Joseph would react to being in such a busy environment without me around after spending over a year mostly at home with just me and his Dad.

Aside from his regular carers and a few therapy home visits/virtual sessions.

It had been a long time since he had seen other adults to interact with and even longer since he had been around any other children. 

As I packed up what felt like half of the house on his first day (he certainly doesn’t travel light), I couldn’t help but feel a tinge of sadness that the days of having him all to myself were now behind us and he was about to start this completely new chapter, separate from me. 

I couldn’t help but feel like we hadn’t had enough time.

Although I am more than ready to gain some ‘me time’ and my own independence back, I secretly wished for one more day.

If this was the case though, parents would never let go.

There’s never enough time is there?

So off we went into the unknown and I reminded myself what a confident, brave, curious and resilient boy he has become and the anxiety eased. 

As soon as we arrived, so many friendly faces keenly greeted us and I knew instantly that he would be right at home there. 

Joseph has done 2 full days, straight in at the deep end, I didn’t want to give him chance to worry about me leaving by going in and out or alerting him to the fact that I was going, so I snuck out once he was settled. 

I was so pleased to hear of how amazing he had done from the teachers and his carers.

They described what he had been up to and everything was completely true to his character, indicating that he felt comfortable and confident enough to explore. 

When I think back to how tiny and fragile he was in his NICU incubator, unresponsive and wired up to machines, and us not even knowing if he would make it through each day.

I am unbelievably proud of every hurdle he has overcome in such a short time and I can’t wait to see the mountains he moves in the next 2 years. 

My Mum used to say to me about parenting “blink and you’ll miss it” and I never truly understood until I had Joseph. They grow so fast. 

My promise to him is that I will cherish every minute, hold him tight as often as I can and soak in every little bit of him, enjoying each stage as he develops and changes. 

Now that the first week is out of the way, I’m very much looking forward to seeing how far his nursery journey takes him, watching him achieve and thrive. 

We recently purchased a Firefly Upsee from a special needs equipment selling page on Facebook and I thought I’d write a bit about our experience with it for anybody that is thinking of purchasing one. 

Joseph is 2 and has evolving cerebral palsy including spasticity in his limbs, he is unable to stand unaided as he has low tone in his trunk. 

His knees are fairly stiff and only bend around 30 degrees.

I did double check with Joseph’s physiotherapist and she agreed that he would be perfectly safe to use the Upsee in short sessions as long as he is well supported and we take care to use small steps that are in keeping with the range of motion that he has in his legs. 

Joseph is a very curious and inquisitive little boy who despite his motor control challenges, is able to navigate his little world in his own ways. 

He is able to roll effectively (and speedily!) to get to where he wants to go. 

I love that he has this small bit of independence and control.

Unfortunately it can be frustrating for him at times, as he is desperately keen to explore his environment and hates nothing more than feeling like he is missing out on something.

Joseph has a Leckey standing frame at home that we use regularly, which provides a different position for Joseph to be in and is great to aid social participation at home. 

However, it is different to the Firefly Upsee in terms of positioning.

The stander is used at a supine angle, so I wanted to try the Upsee to offer him a full upright position and that bit more freedom to move around in other places as well as at home. 

The Upsee was relatively easy to put on with a bit of help, it will take some practice to do so on my own. 

Joseph was interested straight away and seemed to really enjoy viewing his surroundings from a new and exciting perspective. 

He tired quite quickly understandably and so we only did a bit of a walk around the house, giving him a chance to explore the environment. 

As soon as he came out of the Upsee he was signing ‘more’ to me, indicating that he had enjoyed it a lot. 

We have plans to use the Upsee outdoors now that the weather is getting a bit better and we’re particularly excited to use it to go and feed the ducks, giving Joseph the opportunity to take a more active role in the activity and allowing him to see everything from a more optimum position. 

I envision plenty of fun times ahead for us using the Upsee in the future and would definitely recommend it for other children like Joseph.

I wanted to take the opportunity to write a bit about HIE (Hypoxic Ischemic encephalopathy) for HIE awareness day. 

However, in our little family HIE awareness day is every single day. 

Up until New Year’s Day 2019 (the day Joseph was born)- we’d, like many others never even heard of HIE, until during labour our little boy Joseph suffered from a lack of oxygen to the brain, resulting in significant brain damage. 

We had no prior knowledge that he may be in distress and we may never find out the specific cause of his brain injury. 

I remember being shocked that I had to get most of the information for myself from the internet as there was not much literature readily available in the NICU that wasn’t aimed at premature babies. 

I was also surprised given how frequently HIE occurs, that there is only one registered charity for HIE in the UK.

This charity is called Peeps and was set up by a lovely couple in order to support parents where they themselves unfortunately were not. 

At the time of Joseph’s birth, Peeps, was very new and has since grown in terms of the support they are able to offer. 

I know that they are working hard to ensure that parents beginning their HIE journey are more well informed and supported in the NICU.

In the early days it bothered me a lot that there were so many unanswered questions and uncertainty surrounding the condition that Joseph was in following his birth and what it may mean for his future. 

Because of the nature of such an injury and the complexity of the human brain, we were never able to receive clear cut answers from the doctors regarding exactly how this would impact Joe. 

All we had to go off is guesses and statistics and we soon realised that a lot of what we were told was of little meaning anyway as Joe would find his own way in the world regardless of what the professionals said. 

This wonderful little human of ours continuously surprises not just us but many medical specialists too. 

We have accepted that our life is and will most certainly continue to be different to how we had originally planned whilst expecting his arrival. 

Some of those differences bring about very mixed emotions; sadness of course at times, that he will likely never achieve what you would expect a child of his age to achieve.

Although over time this has lessened. 

It’s difficult seeing him struggle to complete simple tasks and try to meet basic milestones.

But the overriding feelings of pride, awe and amazement we feel when we see him displaying more courage, tenacity and problem solving skills than anyone I have ever known is by far worth all of the worry and uncertainty we have experienced and the challenges that I’m sure are yet to come. 

Becoming Joe’s mum has been the most eye opening, terrifying, raw, beautiful, astounding and life altering journey that I have ever been on in my life. 

He has shown me what it really is to love and the true meaning of hope.

He is and will always be my little miracle boy and I will be forever thankful that he is here, filling our days with joy, laughter, wonder and fun. 

The journey we are on has also brought some incredible people into our lives that we otherwise wouldn’t have ever crossed paths with.

For that I can only be grateful as this little community that we have found ourselves in is one that is full to the brim with love, kindness, support and good humour. 

Up until having Joe, I didn’t really know an awful lot about disability and what comes along with it. I guess ignorance is bliss. 

It’s so easy to turn a blind eye to difficult, sensitive and emotive subjects such as disability if it doesn’t impact your life directly.

The old me would have probably seen a disabled person or a family like ours and been unsure how to talk to them and worry about saying the wrong thing. 

I think that this is the case with a lot of people.

I want to knock that barrier down right now and say; If you see us out somewhere doing our thing please come and say hello. I promise you, we will not be offended if you want to ask questions. 

We’re more than happy to educate on the things we have learned and having people take an interest in getting to know about different ways of life is how acceptance and understanding begins.

After all, we live in a most diverse society with a place for everyone. 

We are incredibly proud of everything that Joe has worked so hard to overcome and I love to be able to share that with others. 

Having a disabled child is not a tragedy, we don’t need people’s pity. We need people to see our children as the lovely little individuals that they are.

Sure, our life has extra challenges but we are blessed with this amazing, brave and bright little boy. 

HIE certainly changed our lives in many unexpected ways, but I wouldn’t change it for the world. 

In the hospital bubble, with a very poorly baby, bombarded with medical terminology, tests, tubes, beeping machines and somber faces of the doctors, it is difficult to think of your situation as anything but terrifying. 

It wasn’t until I plucked up the courage to introduce ourselves to other parents on Facebook support pages that I began to relax and accept that actually this is okay.

We’re going to be okay. 

If only I’d known at the beginning that whilst navigating such a turbulent path of worry, fear and uncertainty that we’d find so much joy, gratitude, hope and love along the way. 

My son just turned 2 recently and I’ve been thinking and reflecting back to his birth and those early days quite a lot.

We’ve come so far.

My son was born in 2019 and during birth, sustained a severe brain injury due to lack of oxygen.

The circumstances surrounding his brain injury still remain unclear and we may never find out the exact cause.

When I think back to how I felt during those first few weeks I can honestly say that there hasn’t been another time in my life when I have ever felt so vulnerable or helpless.

I would look to the Doctors and expect them to have all of the answers.

We assume Doctors know every answer. But unfortunately sometimes they just don’t. 

Although I am incredibly and eternally grateful to some of the doctors that have worked hard to keep my son alive, to diagnose and treat him over the last 2 years, (especially his wonderful consultant paediatrician who has known him since the very day he was born and is our go to gal).

They themselves and the tests they carry out are not infallible and they are not superhuman. 

They do get things wrong, they do make mistakes and unfortunately they do not always solve the puzzle. It is ok to question them and get a second opinion. 

Sometimes we can hang far too much on what they say. 

Whilst NICU doctors were telling me my son’s prognosis and apologising for our circumstances I remember feeling that it must be really terrible if they are apologising. 

What they couldn’t tell me though was the amount of love and joy that he would bring to our family. 

They couldn’t tell me that I would grow more as a person in two years than I could have ever imagined. 

They couldn’t tell me how my son would surprise them all time and time again with the things he would go on to achieve.

They couldn’t tell me how I would meet some of the most incredibly kind, supportive and understanding people (other HIE parents) that would fast become my friends. 

They couldn’t tell me that I would develop the confidence and skills to become the best advocate for my son.

They couldn’t tell me that I’d be tested beyond my limits and withstand so much trauma, stress and worry and still have the resilience to keep getting up every day and trying to be the best Mum and carer for my son. 

They couldn’t tell me that I would gain more medical knowledge than I thought I’d ever be capable of learning.  

They couldn’t tell me that disability is not a tragedy. 

They couldn’t tell me this because often they see a patient, an NHS number, a case study or a set of symptoms.

They see a child living a none ‘typical’ life. 

They don’t always get to see the joy that fills you up once you pick through the wreckage and put the pieces back together in your own special way. 

It is our job as parents to show the world that disabilities and differences are not tragedies and there is so much to celebrate and be grateful for. 

I am the parent of a two year old boy that has disabilities and I’ve lost count of the number of people who have said to me that things must be “so hard.”

That our life must be “so hard”.

Some of these comments come from strangers, sometimes they come from professionals or friends.

Regrettably they even come from my own mouth but not because I feel like our life is hard because of Joseph.

Unfortunately we are part of a system.

A system that nobody would choose to be in because it is a system that is far from ideal. 

It is a system that ensures parents like me regularly have to almost prove to complete strangers (sometimes people with very little knowledge of children with needs like ours) that our lives are difficult just to be able to access necessary care/equipment/resources to meet our children’s basic needs.

We have to answer invasive, probing questions and justify everything.

Whilst I’d like to acknowledge that many people who make these comments do not have ill intentions and I can appreciate that sometimes people are trying to express understanding or empathy at our situation within such a system.

I’d also  like to address the issue when these type of phrases are used in relation to the child’s disabilities or medical complexities.

I certainly can’t speak on behalf of every parent out there.

But I do want to talk about the true difficulties of parenting a child with disabilities from my own experiences.

Dealing with negative attitudes, ignorance and preconceived assumptions is what makes our lives harder.

It is other people and systems that make our lives harder. 

It’s the education system that undervalues pupils with disabilities that makes their nursery/school experience harder.

It’s the medical system that often refuses to cover care and resources that children need to be comfortable and to thrive.

It’s having to jump through hoops, making endless phone calls and filling in ridiculously designed application forms and paper work to access the most basic but essential things.

It’s relying on charities to pick up the slack where these systems are failing.

It’s the negative attitudes towards disabilities, especially the prevailing attitude of pity that is often disguised as “niceness” — yet blatant ableism — that suggests our lives are “so hard,” but not representative of the reality of my child’s diagnoses.

If you ask any parent to use words that describe parenting, most of them will inevitably use words such as hard, exhausting, complicated, lonely, expensive.

Because parenting, in general, can be all of those things.

Parenting is hard.

Many of us will agree that this parenting lark is one of the hardest thing we have ever had to do.

Yes, parenting my child in an ableist world makes it much harder than it needs to be.

But not because of my son.

Not because of who he is. Not because of his diagnoses.

It’s hard because this ableist world fails to consider the lived experiences of disabled individuals, failing to see them as fully human, or as deserving of dignity and respect.

But these attitudes are not acceptable. 

That is a fight I will keep fighting for my son until I take my last breath.

I am very passionate about raising awareness of families like ours and always do my best to politely educate others.

I am aware that not all ignorance comes with malice. It is merely a by-product of the society we live in.

Until I had Joseph I was ignorant too.

The fact that I was makes me even more determined to help others understand and to change attitudes towards people with disabilities.

I would like to tell those people what parenting a child with disabilities is really like;

It’s like having a toddler, because he is a toddler.

It’s summer in the park on a huge picnic blanket.

It’s lazing around in front of the telly on rainy afternoons.

It’s celebrating birthdays.

It’s having inside jokes. 

It’s negotiating with a toddler who has his own mind and interests even though he is none verbal. 

It’s Sunday morning cuddles squishing into one bed.

It’s lots of hugging.

It’s trips to the safari park and sea life centres.

It’s lots of words of affirmation.

It’s tantrums.

It’s feeling like we need a break.

It’s expensive.

It’s putting his needs above our own.

It’s doing anything to make him happy.

It’s praying for 5 minutes more sleep.

It’s working so hard to help him achieve and learn new things and celebrating like  lunatics when he does.

It’s messy, it’s exhausting, it’s beautiful, it’s parenting. 

It’s caring about social justice issues that affect my son and other children we know, and I will challenge anyone who believes my child or children like him shouldn’t have the same rights or opportunities as other children their age. 

Its all of these things and so much more. 

It’s life!

Because here’s the thing: disability is a part of humanity. It always has been. It always will be.

And we will continue to have brothers and sisters, and sons and daughters who are disabled.

It is about time that society caught up and learned that it is not a lesser way of living, or rather it doesn’t and shouldn’t ever have to be. 

Parenting my child with his abilities is not “so hard.” 

Being a parent of a child with disabilities in a disabling world..now that is hard.

We are still relatively new to the world of tube feeding.

My son Joseph has just turned 2. He has been fully tube fed since birth. 

For anybody that doesn’t know, Joseph sustained a grade 3 Hypoxic brain injury at birth (lack of oxygen and blood flow to the brain, causing damage to numerous areas of the brain). 

We were told by medical professionals when he was born that a lot of his reflexes were absent.

Including his suck, swallow, gag and cough reflexes.

There was a chance they could kick back in but know real way of knowing. 

At the time, I hopefully and perhaps naively assumed that this would be a temporary measure as I knew that I myself had been tube fed for a short period of time as a newborn. 

It took a while before it fully sunk in for me that I would have to say goodbye to the image of my son with podgy, chocolate covered cheeks. 

I found this difficult at first because  it is human nature to associate such feelings of pleasure, bonding/socialising and enjoyment with food/mealtimes.

It felt like a huge thing that he would miss out on.

As time passed though, it became the norm, much like many of his medical needs.

I have accepted that it is highly unlikely that Joseph will ever eat or drink anything orally.

I’ve dealt with my sad feelings about this as I know that he doesn’t know any different.

You can’t miss something you’ve never known. 

Despite tube feeding becoming just another part of our daily life, it has been far from plain sailing.

Joseph’s journey began with small amounts of expressed breast milk via a nasal gastric (NG) tube. (A tube inserted through the nose and directly into the stomach).

I had never planned on breast feeding during my pregnancy but at a time where I felt so out of control and helpless, I was over the moon to be able to have one important ‘Mum’ thing that I could do for my baby.

I managed to express my own milk for 8 weeks which I’m told under such stressful circumstances, was amazing. 

At 3 weeks old, Joseph began struggling with silent reflux and with no gag or swallow reflexes led to frequent milk aspiration, chest infections and some big scary incidents where medical staff had to intervene to get him breathing again.

It was quickly decided that his reflux was too severe to tolerate being fed into his stomach, despite being given numerous reflux medications.

He was then placed on nasal-jejunal feeds. (A tube inserted into the nose, through the stomach and into the second portion of the small intestine or “Jejunum”).

This meant that the milk would bypass his stomach altogether to reduce the reflux as much as possible. 

The problem with NJ tubes is that they need to be checked that they’re in the accurate location under X-ray.

This means increased exposure to X-rays if they become blocked or pulled out – which can both happen relatively easily and frequently.

The other issue is that the tube can curl up inside and end up going into the stomach or chest and there would then be the risk of aspiration again.

Because of these risks, it was considered by Joseph’s team of doctor’s that it would be unsafe for him to come home. 

Joseph remained in hospital for almost 8 months as we painstakingly waited for him to gain enough weight and grow strong enough to undergo gastrostomy and fundoplication surgery.

A gastrostomy is a tube surgically placed directly into the stomach for feeding.

A fundoplication is a procedure to help keep the stomach opening closed in order to stop reflux coming up into the windpipe and back down into the lungs. 

Joseph’s surgery went well but he struggled to breathe on his own after they took him off the ventilator.

He had to be placed back on the ventilator and was poorly in the ICU for a week.

He built his strength back up and was then transferred back to our local children’s ward where we began putting plans in place for him to finally come home. 

Following the surgery, feeding was going very well for a period of around 8 weeks and then we ran into more problems.

The fundoplication hadn’t been as successful as we’d hoped.

His reflux was back and he began vomiting, losing weight and having gastric bleeds due to possible ulcers.

The reflux and vomiting then led to aspiration and chest infections.

He was in and out of hospital.

It was eventually decided that it would be a better option for Joseph to go back to jejunal feeds, this time via a Gastro-jejunal feeding tube (GJ).

This is a simple procedure that can be done under X-ray and a mild sedative.

It is similar to the NJ tube except instead of going in through the nose, the tube goes directly through the gastrostomy and into the jejunum.

This still poses risks but up to now has proved our best option.

Since the transition to GJ feeding, Joseph’s health has improved massively.

He hasn’t had any chest infections or hospital admissions for a whole year.

I think although social distancing, isolating and stricter hygiene measures have had a hand in this, it is mostly down to the jejunal feeding. 

The downside to this type of feeding is that Joseph has to be attached to his feeding pump bag all day every day.

This can be restrictive and challenging at times as he likes to roll around and he then gets tangled in the tube.

It can also be difficult when we’re out and about, but like everything else it has become our new normal and we’re just used to it being there.

I can’t help but be extremely grateful for it’s presence because it means that Joseph can be fed safely. 

I often see articles weighing the pro’s and con’s of breast feeding Vs bottle feeding.

When I was pregnant and attending antenatal classes there was absolutely no mention of babies going on to need tube feeding, temporary or permanent.

I feel this is something that should be represented more.

After all, fed is best, whatever form it may take.

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.