This pandemic has been tough on everyone one way or another, but for those of us that have vulnerable loved ones to consider, it has been particularly difficult.

My son Joseph spent most of his first year in hospital as he sustained a Hypoxic brain injury at birth and wasn’t discharged until he was 8 months old.

He then had frequent hospital admissions over the winter months of 2019; including over Christmas and his first birthday on New Year’s Day 2020. 

We missed out on so many things during the course of his first year.

The kind of things I’d looked forward to during my pregnancy; taking him to my work place during mat leave to show him off, attending mum and baby groups, going to play centres.

All these things were a no go for so long.

Each time we missed out on something, I’d tell myself that it was ok because there’d be other groups, other family day’s, other occasions that we could enjoy like everyone else.

Then the lockdown hit and we’ve spent the better part of another year under tough restrictions.

It has been incredibly difficult keeping Joseph away from our family. 

Initially we also cancelled all of our overnight respite care that we rely heavily on.

At the beginning of the first lockdown my partner and I muddled through for 10 weeks with no help at all and I can honestly say now that I don’t know how we managed it for that long.

My mental health has been very up and down and I can often swing from feeling so grateful to have what we do have to feeling utterly fed up and unmotivated to do anything beyond basic functioning.

During the hard days I have a tendency to berate myself and feel useless and guilty.

It’s difficult to break that thinking pattern and then become sucked into a vicious cycle.

If this sounds familiar I want to tell you that it’s ok, it’s normal and you can break the cycle.

Be kind to yourself. Try not to compare yourself to others or bully yourself.

Just take the time you need to be mindful of your feelings and accept them.

You’re allowed to have big feelings. This is a big situation.

Do the best you can, that’s all anybody can do and take it one day, one hour, one minute at a time if that’s what you need.

There are people that can help if you can’t do it alone. 

I think it’s also important to look for the silver linings in all of this. 

Despite our personal challenges, there have also been many positives to come from this pandemic. 

We were fortunate enough to be able to have time together as a family unit that we never would have had otherwise.

My partner was able to spend quality time with Joseph, seeing him grow and develop with his own eyes, rather than being fed information from me.

The lack of contact with others and stricter hygiene measures has had a huge influence on Joseph’s health and he has successfully gone a whole year with no respiratory admissions.

That is huge. 

The time away from the ones I love has made me so much more appreciative of the many wonderful people in our lives and as soon as I am able, I’m going to hug each one of them so tight. 

I am so grateful for the wonderful friends in my life, especially the other SEN mama’s who’s understanding, empathy, humour and support I couldn’t have got through many days without. 

It has shown me that despite all the challenges and struggles life has thrown us, we are blessed in so many ways. 

So if you’re reading this from a dark place, I want you to know, I understand, it’s ok to feel the struggle.

But please, look for your silver linings, even if you have to squint.

You might just love what you see. 

Dear Daddy,

I want you to know that I think you are the best Daddy in the world.

I’m not sure I know any other Dad’s but none of them can be as clever and funny as you.

You have learned so many new things to make sure you can be the best Daddy for me.

You’re never too tired to cuddle and play even though lots of times, you’re awake to look after me in the night whilst me and mummy are sleeping.

I know that sometimes you are very tired from working hard and because you are always doing lots of jobs at our home to make it nice for us.

Thank you for making it a nice place for us to live, I feel happy and safe in our home.

I love it when it is just me and you Daddy because that is our special time.

I like it when we wake up in the mornings, you take me on a walk around the house and  we look out of the windows.

You talk to me about the weather outside.

I love the songs you sing to me Daddy and when we play guitar together, you let me do the strings all by myself.

I love it when you fill the bath with way more bubbles than Mummy and you sing the Ducky song.

You are my best mate in the world and my hero.

You always look after me and Mummy and I know that when you are not at home for lots of days and I miss you, it’s because you are working hard to make pennies to buy me monster trucks.

I like seeing your face on Mummy’s phone before bedtime when you’re at that work place.

I love it when you talk to me and I get excited to touch the phone like I touch your face when you’re at home with us.

You and mummy taught me all about gentle hands when I do face touching and I like touching your face because that is how I tell you I love you.

Lots of love from Joseph

Before having my son Joseph, I knew that the NICU existed, I had walked past it several times on my way to appointments when I was pregnant.

However, I didn’t know that there were different levels, the extent of my knowledge was that it was where premature babies were treated as I had spent a couple of weeks in neonatal as a baby myself with slight jaundice. I hadn’t ever thought about what would happen though if my own full-term baby was born seriously poorly and fighting for his life. Ignorance is bliss.

My son Joseph was sent straight to the Neonatal unit at our local hospital almost immediately after he was born. He was born via natural delivery at 37 weeks gestation. For unknown reasons Joseph was born in very poor condition. The doctors and nurses tried hard to get him breathing on his own but eventually they sent him to be intubated (put on a ventilator, which for anyone that doesn’t know, is a machine that breathes for the patient).

I understood when the doctor told me he had suffered from hypoxia that this meant lack a of oxygen to the brain. I knew this because 7 years earlier my Nana had unfortunately suffered from severe hypoxia whilst in intensive care following major surgery. This had ultimately led to the doctors deciding to withdraw her life support. So as soon as the consultant uttered that word after they’d whisked my new-born away, I think I went into shock.

I don’t remember even having much of an outward reaction to her words.

I remember being told that Joseph needed to be taken to another hospital with a level 3 Neonatal unit to receive hypothermic cooling therapy. I wasn’t even aware that there were ‘levels’. Within a matter of a few hours, he was transferred to another hospital around 45 minutes away.

The doctors and nurses at this hospital, to this day remain some of the most competent, compassionate medical professionals that I have ever met. (I’ve met a lot!).

They really were a beacon of light, guiding us through a dark tunnel that was to be the beginning of our journey onto the path we now find ourselves on.

From the minute we arrived, nothing was too much trouble for the staff. They took care of us as much as they took care of Joseph. Parking was taken care of, a room for us to stay in just across the corridor was taken care of, all of our meals were taken care of, we were even given staff discount vouchers for the hospital café!

This blew my mind completely as I saw first-hand how tirelessly these staff worked for up to 12 hours a day in such an intense environment and yet they still managed to do so with a smile. They still managed to find the time to do everything in their power to make our life just a little bit easier.

They still managed the time to chat to us, to comfort us, to answer our relentless questions, to explain what all of the unfamiliar equipment was, to give us reason to hope and to teach us how to carry out all of the medical cares that Joseph needed.

I remember being filled with such overwhelming feelings of respect, admiration and gratitude for these incredible people that if I thought too much about it, it would reduce me to tears.

Though we were only at this level 3 unit for 2 and a half weeks out of the huge chunk of time Joseph came to spend in hospital, the impact that it had on me emotionally will never leave me.

I felt terrified when it was time for Joseph to be transferred back to our local neonatal unit at the hospital where he was born. Although I knew it was a positive step in the right direction, the thought of leaving this bubble that I’d come to feel so safe in absolutely filled me with dread.

I needn’t have worried so much though as we were very warmly welcomed back to our local hospital by a team of wonderful staff on the neonatal unit, that during almost 5 months spent there, came to feel like extended family to us.

The NICU is a very unnatural environment to spend so much time in as a new parent.

We were constantly surrounded by a cacophony of beeping machines. I remember finding it strange because it is quiet and yet noisy, bright and yet dark and the time seems to pass slowly but fast all at the same time. It’s hard to understand what I mean by such contradictory terms, unless you have experienced it first-hand.

I found it quite upsetting that for so long we were unable to spend any real quality time with our baby on our own as a family and we had to leave him there every night to come home. His absence filled every room in the house, despite the fact we had yet to bring him home. I saw it in the empty Moses basket next to our bed. I saw it in the freshly sterilised bottles we wouldn’t need as Joseph was tube fed. I saw it in the many gifts, clothes and baby paraphernalia scattered, unused around our house.

Despite this, staff were so good at allowing me to take things in from home so that it felt a bit more homely in his little corner. One lovely nurse found Joseph some amazing sensory lights to go around his cot and this was the first thing that I noticed him really looking at and enjoying.

It was particularly difficult being in the NICU with a full-term baby. I was surrounded by premature babies. Everything was geared towards premature babies and I often felt like we didn’t belong there. The literature we received about HIE (Hypoxic Ischaemic Encephalopathy) was so limited.

One thing I’d like to see change in the future on Neonatal intensive care units would be more information and help for parents of children with HIE and other conditions. Not all babies in need of intensive care treatment are born early and this is a common feeling amongst parents of poorly full-term babies. I know this is something that charity peeps hie are working hard to improve, which is such a positive step forward.

Another thing that I struggled with was the fact that Joseph had never been outside into the world. During particularly dark thoughts, I would worry that we’d lose our baby having never been able to take him outside of the hospital.

One day when Joseph was around 3 months old, a very special nurse made something incredible happen for us. She arranged for us to take Joseph out for a walk around the hospital grounds. It was a military operation, but I will never be able to articulate how wonderful it was to finally see him with the sunshine on his face and to watch him absorb all of the new exciting sights, sounds and sensations.

As I gradually became more confident at being outside with him and all of his equipment, I was soon able to take him out unassisted for daily walks, and my partner was able to join us at the weekends. I finally started to feel like a real mum and that tiny bit of freedom worked wonders for my mental health. I owe that to the lovely nurse responsible for organising this, who I still keep in touch with to share Joseph’s progress.

The staff in the neonatal unit did everything they could to make us feel as comfortable as possible and they supported us for 5 long months whilst Joseph lived on the unit. I say lived because that’s genuinely how it felt. It felt like that was Joseph’s temporary home and we were just visiting him whilst we waited for him to be able to come home with us. We were eventually allocated a room when Joseph was around 4 months old so that we could spend some time each day together away from the bustling and beeping of the neonatal nursery room.

The staff on the unit operated a parent led approach that they took from day one.

I felt like our roles as Joseph’s parents were the main focus and priority of the staff and in turn, influenced the way that they cared for him. I think it’s so easy for parents to feel as though their baby doesn’t really belong to them when put in these situations but I knew that the staff did everything they possibly could to combat that, and to ensure that parents were bonding with their babies.  The staff, I felt were very much led by the parent’s thoughts, feelings and wishes.

The NICU is not somewhere as a parent you ever want to find yourself, but having experienced it, I can’t even fully express how eternally grateful I am to all of the NICU staff. I owe everything to them. They saved Joseph’s life on more than one occasion and they helped to guide us in becoming the type of parents that Joseph needed us to be.

There is a certain quality that people in this role have that I can’t quite put into words, it goes above and beyond empathy, love and compassion. What I can say though is that each and every one of them will be forever special to me, Joseph and all of our family for supporting and caring for us so well during the some of the most difficult and worrying times in our lives.

Every mum I know has at some point experienced Mum guilt. Whether you’re the type that is plagued with it daily or whether it creeps in fleetingly from time to time. We have all experienced it, and can probably all agree that it absolutely sucks and is an unwelcome visitor in our already busy Mum minds. Get Frank Skinner on the phone and stick that in room 101. (Is that even still on?!).

It seems almost as though this mum guilt somehow just suddenly appears during pregnancy, though I couldn’t tell you when and I certainly don’t remember reading about that on my bounty app!

Since having Joseph I have met quite a few other SEN Mums and I think it’s fair to say that we naturally feel the mum guilt somewhat more than most. Our kids come with a whole bucket load of extra things to do and worry about, and unless you’re fortunate enough to have your own PA to take on some of the load for you (a girl can dream) then chances are, as one single human being, you cannot do it all at once, flat out 24-7. This in turn leads to those berating thoughts and “should haves” or “shouldn’t haves” that all too often leave us feeling like we’re failing.

Well I’m here to tell you mama, that you’re not failing, in fact you’re doing great! Chances are if you’re frantically worrying if you’re doing a good enough job, you are already an amazing Mum.

Yes, I’m talking to you. The mama that cried in the bathroom away from everyone when it all felt a bit much, so you didn’t freak anybody out. I see you, you’re doing amazing and you are enough.

I’m talking to you. The mama that felt guilty for wishing her kids could go back to school already. You don’t love them any less. I see you, you’re doing amazing and you are enough.

I’m talking to you. The mama that puts on a brave face for other people every day even though you’re facing you’re own internal battles. I see you, you’re doing amazing and you are enough.

I’m talking to every single one of you Queens out there that put everything and everyone before yourself day in, day out. Those of you that feel guilty if you spend your free time sitting in front of loose women, gorging on chocolate digestives instead of doing the hoovering up.

I see you. I am you. We are all enough.

As humans, we feed off the energy around us. Speaking from my own experience, I have a tendency to absorb whatever Joseph’s mood is. I know this is the case for many of my friends, especially those that have children with complex needs. I think this is natural as a parent. You share in their joy and their misery in equal measure. It is difficult to remain calm and positive when your child is clearly unhappy – particularly when there are no obvious solutions for helping them.

Recently we had a bad day following a night with no carer. My partner works away during the week and though we do have respite to help a few nights, some days the exhaustion still manages to sneak up on me and it feels like no amount of sleep would ever cure me. It is that bone deep, soul aching exhaustion that gnaws at your edges and penetrates every pore.

This particular day I had not slept very well the previous night and the sleep I had managed was broken by needing to suction, turn, tend to an incessantly beeping feeding pump, change feeds over, administer meds, administer nebs and oxygen, change nappies, pyjamas and bedding, stroke, soothe and settle. Following this we were both awake and up early. All of the tea in China couldn’t breathe the life back into me.

Joseph was noticeably out of sorts. I dutifully carried out all of the obvious checks; sats, heart rate, respiration rate, temperature, venting his feeding tube and so on. Nothing was jumping out as the clear cause of his unhappiness. I put it down to possibly teething and reflux. A large proportion of the time with complex needs it is guess work. Acting as a medical detective to go through a list and eliminating the many possibilities until we reach the culprit. Unfortunately, though not all mysteries are solvable, and we have to accept that we might not find out exactly what the problem is.

It is especially difficult with nonverbal children that are unable to tell us how they are feeling. We have to rely on their subtle tells in their body language and facial expressions.

This was one of those days. Joseph was clingy. Which is out of character. When he is on form he is a fiercely independent boy and usually only seeks out so much affection if he is feeling under the weather. His evident upset was rubbing off on me because I couldn’t fix it for him.

Aside from Joseph’s rigid bath and bedtime routine, we don’t have specific timetable of events during the day in our house. I am fairly relaxed in that sense but I do always like to make sure that he is doing plenty of physio worked in alongside his play, visual stimulation activities and other adult led engaging play throughout the course of the day.

Joseph was having none of this and was only happy either cuddling me or watching the television. Well, as someone who worked in childcare for years, I always feel like I should be doing something educational even if it’s simple learning as we play. Whenever we have days like this that revolve around the television I feel that familiar guilt tapping me on the shoulder. The flood gates opened and in came the nagging “we should be doing something fun and engaging”, “I shouldn’t have let him have this much television”, “He should have spent more time in his chair” etc etc and so on until I had to just sit back and stop.

I had to try and remind myself that it is ok to have a day off. There is so much expected of Joseph and of myself on a daily basis. Sometimes it’s ok for him to have a lazy day with mummy where we worry a bit less about all the extra therapies, where I worry a bit less about the demands of housework and my enormous and endless pile of paperwork. It is ok if I take a day off from phone calls to various medical professionals, charities and services. They will all still be there tomorrow. It is ok if we don’t get dressed until noon. It is ok to have time to breathe, to process and just be.

I have to remind myself of something often and I’d like to share the same sentiment with all of you.

A bad day does not mean a bad life.

Read that line again and just let it sink in for a second. A bad day, or 10 bad days even, does not equate to a bad life. When you do have one of these days, try to remember everything that you do with and for your kids on a daily basis and give yourself a break. This difficult day will pass and there will be good days that follow. Congratulate yourself on what a fantastic job you are doing.

A day of hanging out together in front of the television is not a day wasted, but a day well spent recharging our batteries so that we can be on top form for the next curveball life throws our way.

Before I had my son Joseph, I was what some people may refer to as a pessimist. At the time I preferred to coin the term as ‘realist’, but no matter what label you put on it, my outlook on life and of humanity could often be quite bleak.

I struggled on and off for years with anxiety and depression and amongst the many challenges this presented within my own life, it also meant that at times I found it difficult to see the good in the world.

Then, enter Joseph.

Joseph made his dramatic entrance into the world on New Year’s Day of 2019, barely clinging to life after sustaining a Hypoxic brain injury during my labour. From birth he spent 235 long days in hospital before having a fundoplication and gastrostomy surgery, then following this, his highly anticipated discharge at the end of August 2019.

Joseph has numerous medical conditions as a result of his brain injury but despite the initial prognosis that seemed quite grim, he is doing fantastically well. He has his challenges but remains a very happy, clever, determined little boy.

A couple of months after Joseph eventually came home, his Dad, my partner Barrie was diagnosed with Guillain Barré Syndrome. This is a very rare neurological condition in which the body attacks its own nervous system. It affects nerve sensation and movement and in some cases, patients end up on a ventilator and need to have intensive physiotherapy to learn to walk again.

Barrie spent two weeks in the hospital before coming home. Fortunately Barrie had a mild case that kept him out of the ICU but still had at the very least a few months of recovery ahead of him. As Barrie was self employed at the time, with no insurance to fall back on for such an event we were up the proverbial creek without a paddle.

It seemed like life wouldn’t give us a break and I certainly wouldn’t have got through all of those difficult months without the unwavering support of our family, friends and Joseph’s large team of professionals that all rallied round to make sure we were doing ok.

In the 20 months since Joseph’s birth and some of the challenges that we have dealt with as a family that I have already mentioned, I don’t think I have ever witnessed or experienced such an outpouring of love, support and kindness, some of which has come from complete strangers.

I like to think that Joseph’s birth was the catalyst that completely changed my outlook on life. In many ways I have him to thank for opening up my eyes to the fragility of life and showing me how precious and valuable it really is. He has shown me what is important in life and I now have a much greater appreciation for the little things.

Although Joseph is most certainly the main reason that I now have a much more positive way of thinking, there are also a great deal of other people to thank for restoring my faith in humanity.

There are not enough thank you’s in the world for me to be able to express the depth of my gratitude for those that have touched our lives with acts of kindness both big and small during Joseph’s life.

Aside from those that are deeply embedded within the fabric of our lives that regularly support us in so many ways. There are still an immeasurable amount of people that have helped in various ways; some that I have never met and may never have the pleasure of meeting, and some that I have only had a one off chance encounter with that I often think of.

I hope they know that they have made the world feel a bit of a brighter place for me and my family.

I’m sure some of these people will likely be oblivious to the impact that they have had and many will never get to hear my sincere thanks. But I’d still like to acknowledge them all the same.

To the NICU nurse that held my hand, hugged me and offered me words of encouragement and empathy whilst I cried the first day Barrie went back to work after Joseph was born. I never did get to thank you properly before we left. Your words have stayed with me. Thank you.

To the lady in the hospital café that comforted me whilst I cried, after embarrassingly dropping my tray of food all over the floor, in front of everyone the morning after a bad night in the NICU. You sat me down and cleared up the mess I’d made, making sure that you brought me a new breakfast over, free of charge. I still haven’t forgotten about that morning. Thank you.

To the lovely people that knit bonding squares for NICU babies. The squares we received when Joseph was in the NICU brought me such comfort at that immensely distressing time. At a time when despite being across a corridor from my baby, it felt as if I were across an entire ocean from him. To have something tangible to hold, that smelt of Joseph really helped me to get to sleep at night whilst my mind was racing. Thank you.

To the lovely taxi driver who listened to me jabbering frantically about Joseph, the first night I took off hospital duty to go and have some time with a friend. You were so empathic and kind as you listened to my story and refused to charge me for my fare. You didn’t have to do that and it meant a lot to me. Thank you.

To the many friends and acquaintances of our extended family that sent cards and gifts for Joseph and who I know still regularly ask how he is doing. Knowing that so many people are out there rooting for our boy means more than you could ever know. Thank you.

To the Aunt (that we’ve never met) of one of our friends that donated £1000 to our just giving page when Barrie was out of work.  To the stranger that has never met us that donated £200, and to the many other wonderful people that donated. That money was absolutely invaluable to us, it helped to provide Joseph with a much needed piece of equipment, it helped to keep a roof over our heads and food in our bellies when all we had as income was my tiny amount of carers allowance and Joseph’s DLA. Thank you all for your kindness and generosity.

To the lady in the local café that took a shine to Joseph. You’ll never know how much it meant to see you holding my baby and chatting to him the way you did. How much it meant to be asked the right questions about him in a way that didn’t make me feel uncomfortable. I hope that others will see you interacting like that with families like us and feel that they can do the same. Thank you.

To the mum of one of Barrie’s old friends that batch cooked us loads of delicious meals for our freezer. You have no idea how helpful this was during a stressful time. Thank you.

To the many other incredible people that I have not mentioned because to do so would take me until next Tuesday. Thank you, thank you, a thousand times, thank you. The world is a better place for having you in it.

I may never be able to personally thank all of these people. But what I can do is play my own small part in paying it forward when I can and be an important piece in the domino effect of kindness to spread around the world.