It’s been a little while since I blogged, the last time the world was a very different place!

We are now mid-pandemic and life has changed considerably. You see we are trying to shield my 4-year-old. It’s not quite as straight forward as you would imagine. The government advice on shielding seems to primarily apply to adults.

The advice includes gems like “try and maintain a 2-meter distance between yourself and your family members” and “try not to share living spaces”. I can’t really leave my 4-year-old in a room by himself all day, and we certainly can’t come close to keeping a 2 meter difference when he relies on us for all of his personal care needs. Never mind trying to explain that to his adoring younger brother who loves nothing better than snuggling up to watch cartoons together.

We very early on came to the conclusion that the only way to shield him was to practice shielding as a family. We are very fortunate that my husband can work from home, particularly as a key worker, so on March the 12th my eldest finished his last day in school and we’ve been home ever since.

Remarkably Thomas is coping really well.

He doesn’t particularly want to participate in therapy with me, but he is more than happy hanging out in the house with us and catching snippets of sunshine in the garden when the neighbours are indoors.

And my youngest has plenty to keep him entertained, a big garden and a ridiculous amount of toys that I am very very grateful for right now!

But my eldest? Oh, it’s hard for him. He celebrated his 8th birthday in April and was devastated not to have been able to have his friends for a party, he’d been planning it for months. He’s never been particularly fond of school but even he is now saying he’d like to go! We’ve managed a few online gaming sessions with accompanying zoom calls with some of his friends but it’s not the same.

As the rest of the country starts to come out of lockdown, we have been thinking about what comes next for us. Thomas is still shielding until mid-July time, but how long can we continue as a family, confined to these four walls with no human contact?

This afternoon my eldest sobbed in my arms about how unfair this all was, how much his misses his friends, and the things he likes to do outside of the house. So we have to find a balance, between protecting Thomas’s physical health and protecting the mental health of our other children.

So despite my anxiety, I rang the play specialist from our local hospice and requested an appointment, as I know he is missing her and would value some time with her, and I know that the hospice of all people will understand the importance of keeping Thomas

Dear Daddy,

I’ve not met many other Daddy’s, I’m only four years old. But I reckon you must be the best daddy there is.

I know our first meeting didn’t quite go to plan, and although the first few weeks were very scary for me it helped having you there keeping me comfortable, giving me my milk and cuddling me.

Most of all, it helped knowing that you believed in me.

I was so glad when you learned how to suction my secretions, so that I was safe to come home with you. All I wanted was to be safe at home with you and mummy and my big brother.

And then you learned how to put my feeding tube in for me, so that I didn’t have to go hungry waiting for a strange nurse to do it for me.

I know you’ve always had to work hard to make sure that we all have everything we need, but I am so glad that you still have time to cuddle and play with me.

I love that you know what my favourite TV shows are, and I think you are really good at picking out new ones for me to try.

And I love playing with you and my brother’s, I’m not afraid of rough and tumble and I love that you always let me get involved too.

I love that you get my sense of humour.

Not many people would laugh when I pee on them, but you do. And then you laugh with me for laughing at you.

I love that you are always there in the middle of the night, if I wake up scared, or in pain, or stuck in a funny position, you always come and rescue me and make sure I’m ok.

I love that you still carry me up and down the stairs each day, even though I’m growing very big now, and I know that sometimes it hurts your back, but I feel so safe in your arms.

Sometimes people tell me that I’m a superhero, but I think the real superhero is you and I’d really love it if you would wear your pants on the outside of your clothes every now and then because that would make me laugh!

We’re getting to an age where it is unusual for a child of my son’s age to still be using nappies. He was 4 in October and will be starting school in September but he is a full time nappy user.

You see my boy has complex cerebral palsy and as much as I would love to ditch the nappies he can’t physically sit on a toilet or potty.

There is equipment out there that would support him to use a toilet if he is capable of a) holding his urine and bowel movements and b) communicating when he needs to go.

However, it is not always practical outside of the home, and the number of full changing places featuring a hoist are still woefully inadequate.

So even if we do get to a point where toilet training is a possibility he will still need to use nappies or pads on a regular basis.

So now he is 4 our Health Visitor sent out an incontinence nurse to deal with our referral to the incontinence team at the hospital. She takes some history and then rather sheepishly confesses that as per protocol, before she can make the referral she is required to give me toilet training advice and then give me time to try it out to see if it helps.

We both know this is a waste of our time, but you know, policy. So she doesn’t actually go as far as to try and give advice but says she will just put the referral through in 6-8 weeks time for us.

I couldn’t help but be a little bit frustrated I’ll be honest.

At the beginning of the month I received a letter from the incontinence clinic to say that they had received our referral but that before they would make an appointment they needed me to keep a diary for 3 days showing his fluid intake and nappy output on an hourly basis.

My heart sank when I saw this. It looked like a big administrative task and my assumption was that it was to rule out underlying health issues relating to urinary or bowel output.

So it felt a bit pointless when we know his bladder and bowels work just fine.

It really felt that the system wasn’t used to dealing with kids as disabled as my son.

This isn’t the first time I’ve felt like this.

Filling in the dreaded DLA renewal forms really highlight this as well, I answer most questions with “My son requires full adult assistance with all personal care tasks” while ignoring the tick boxes which just don’t apply to him.

So I queried how necessary this was with my Health Visitor who queries it with the clinic on my behalf.

I had a very long phone call with them where they maintained the information was still useful without really explaining how but did agree to make an appointment without the diary.

They then dropped the big bombshell, they will only provide 4 nappies/pads a day. I don’t know about you but I don’t fancy sitting in my own urine and faeces for up to 6 hours at a time!

It’s not too much of a problem while he still fits in supermarket brands, they’re very cheap to buy, but once he’s into specialist products it looks like it will cost a small fortune to top up the meagre supply from the hospital.

No wonder families with disabled children spend on average an additional £581 a month to enjoy the same standard of living as families without a disabled child, with almost 1 in 4 families paying out over £1000 more.

Last year I decided to ditch my New Year’s Resolutions and following in a friend’s footsteps I chose a ‘word of the year’.

The idea being, you pick one word to focus on every day all year that sums up who you want to be, or how you want to live.

Last January I was feeling frustrated by all the things I hadn’t found time to do. When I reflected on 2018 I felt that I had plenty of time but was not utilising it effectively. So my word was ‘Time’.

It seemed to start off well, I began ticking off some of the things that had been hanging around on my to-do list for too long.

Pretty soon however I began to feel the burn out. Utilising all my time in industrious endeavours was exhausting.

As I limped towards the end of the year I was beating myself up over my inability to use my time constructively.

I was still building an impressive to-do list, I was still feeling like I was failing at being a mother and carer, and I was still unable to give myself the care I needed to survive.

Then a post on Facebook summed it up “When I say I don’t have time to do something, what I mean is that I am already giving as much of myself as I am able”.

Yes! It’s not about time, it’s about how I’m coping generally on a day to day basis with all the worry and stresses that come with not just being a parent but also a carer to a special needs child.

So as I prepared to welcome in the new year I reflected on what I wanted to say goodbye to, and what I wanted to welcome into my life in 2020 and I realised that above all else I needed more compassion.

Compassion for my family, they might drive me up the wall at times, but they are still trying their best.

Compassion for my friends who might not have the same struggles we do, but still have struggles of their own.

And most importantly, compassion for myself. Because I am trying my best. At all times.

Sometimes it is really really hard, and if that means I can’t achieve as much as I’d like then that is ok. I am good and I am worthy, I deserve to be happy and healthy. I deserve to be loved by myself and others.

It is ok to prioritise myself from time to time to ensure that I am at my best for caring for my family. It’s ok to not be perfect, it’s ok to not achieve my high expectations.

So everyday this year I shall look in the mirror and remind myself to extend myself some compassion.

Anxiety is when agreeing to meet some new friends for lunch in London seems like a rash decision.

It’s where the idea of phoning ahead to request assistance on the train is too much because it involves speaking to a stranger, so you turn up on the day hoping for the best and stand on the platform chewing your fingernails and fretting because you’re not sure where the wheelchair spaces will be, or if you’ll be able to get on without a ramp.

It’s being only able to focus on one event at a time, meaning that life is spent sprinting from one event to another with nowhere near enough time to plan effectively which, of course, only increases the levels of anxiety.

It’s startling awake in the middle of the night at the smallest noise, because you’re afraid one of your children might be in trouble, or lying awake all night because one of them banged their head before bed and you’re worried their brain will swell in their sleep

It’s feeling a stab of fear when you see an ambulance heading towards home or school or nursery, convinced for a moment that it is headed to save one of your children.

It’s checking your husband’s phone tracker when he doesn’t answer the phone to make sure he made it work safely while pushing images of his mangled car out of your head.

It’s sitting in a room of people and feeling alone with the weight of all your anxiety sitting on your shoulders. Unable to relate to people who move through life seemingly so effortlessly.

It’s worrying that the message you sent was too needy, or not actually funny.

That they didn’t reply because they don’t want to talk you. Feeling tolerated, rather than liked.

It’s re-reading the messages or re-playing the conversations and trying to decide if that person is cross with you, or annoyed with you, if they have judged you as inadequate.

It’s saying repeatedly that you don’t have time for anything, when what you mean is that that you don’t have the energy.

It’s ignoring the voicemails and emails and text messages. It’s rejecting the phone calls. It’s sitting back silently in the group chats not knowing how to reply to any of it.

It’s blinding headaches, stomach aches, sleepless nights, short tempers, sensory overload. It’s catastrophising everything, all day long.

It’s never feeling good enough. It’s never feeling rested. It’s every muscle in your body clenched all the time.

It’s being prescribed medication and then not taking it because you’re worried about the side effects.

It’s lying in bed scrolling Facebook until the clock passes midnight and your eyes tear up just to keep your mind distracted.

It’s writing this blog and then going to delete it instead of publishing it, because then everyone would know the churning mess beneath the mask.

This is what anxiety looks like.

In the summer of 2015 I was pregnant with my second child.

We’d kept the gender a surprise which made it surprisingly difficult to choose a name, and without a clearer sense of who this small person growing inside me was it was harder to plan clothes and blankets etc. But that was okay, second time around I knew I didn’t need much more than a car seat, and some nappies and babygrows.

Like my eldest, this baby would co-sleep and breastfeed.

Breastfeeding hadn’t come easily with my first, in fact it had been rather difficult.

But I tackled it like I do most problems, I did my research, bought every piece of equipment I thought could possibly help and then turned all of my determination and stubbornness towards solving the problem. Which we did, and we (mostly) enjoyed nursing until he was 3 and a half years old.

I was still nursing him while pregnant with baby number two and I imagined that soon I would have two little blond heads nursing together.

After my previous experience I was confident and determined to be successful second time around. By this point I was an active member of my local La Leche League and had a brilliant support network should I encounter any problems.

So it all came as a rather enormous surprise when things didn’t quite go to plan.

Thomas arrived early one Thursday morning in October, but during delivery he had been deprived of oxygen and was born in very poor condition.

The first few days were very touch and go while we waited to hear if he would pull through. As most NICU mums do, I turned to the breast pump to stimulate my milk production while I waited.

Thomas was 6 days old when the speech and language therapist came to see us. I was so excited to see her and discuss how to begin breastfeeding directly.

Never in a million years did I anticipate what came next.

Thomas was born with no suck, no swallow, no gag and no rooting reflex. All the natural reflexes he needed to feed were completely absent.

She told me he would likely be tube fed for the rest of his life.

For me, this was the moment, the moment when I realised my life had already changed without me noticing.

There were a lot of tears cried that night, and in the days that followed as I grieved for the idea of a child that I had lost, for my life as I had known it, and for all the things I had dreamt of or hoped for for this baby.

Through it all I kept on pumping breastmilk. There was little else I could do for him at this point.

I soon resolved that I would continue to pump. It seemed like the most sensible thing to do.

I knew that breast milk promoted optimal brain development and contained stem cells, both of which seemed important for my brain injured boy.

It also promoted optimal eye development which could only be a good thing for his visual impairment.

I decided that I would express for him until his second birthday as The World Health Organisation recommends breastfeeding to age 2 and beyond.

Without a swallow Thomas was very vulnerable to aspiration pneumonia, especially as he had a particularly terrible case of reflux.

However, I also learned that breastmilk had protective factors here too. The good bacteria in breastmilk was less likely to cause a chest infection if aspirated, and could actually help neutralise any bad bacteria.

And of course there’s all those antibodies which are so helpful in the winter months especially.

It wasn’t long before the gruelling regime of expressing and feeding started to take its toll, while his reflux had him classified as failure to thrive.

His dietician struggled with not being able to accurately account for what was going in and she really wanted some thing with much higher calories.

We would have almost weekly conversations about introducing formula.

Family and friends would ask when I was going to stop, they saw it was a struggle and “surely he’s had all the good stuff by now?”

I was spurred on by the support of my husband and closest friends, online friends and my local La Leche League group.

In those early months, as I learned to care for my disabled baby, the only place I would venture out to was La Leche League, where the Leaders would cuddle my baby and feed me tea while I pumped.

As I grew stronger and more confident my resolve strengthened.

Although at the same time I felt stuck in a catch 22. As the months passed Thomas seemed unable to tolerate anything other than breast milk, and he didn’t tolerate that well as it was. 6 months came and went but unlike other babies Thomas was still on an exclusive milk diet.

We soldiered on past 12 months, stuck in the repeating cycling of expressing and feeding.

Finally relief came at 14 months when Thomas had his peg placed. Finally we could start to wean!

We started to introduce a blended diet, and before long I was able to start reducing his milk feeds and everything started to feel a bit more manageable.

I was still expressing twice a day for 30 minutes each but it was a lot easier.

On the morning of his second birthday I was resolute. I had done what I had set out to achieve. 2 years of breastmilk.

I got my pump out for one last time and stored the last of my milk at the back of the freezer as a keepsake.

I had a small frozen supply that would last us a couple more months so it didn’t feel sad, I was just delighted to pack the breast pump away!

I still carry some grief around not being able to feed Thomas directly. It certainly made meeting his emotional needs significantly harder.

But it is hands down the parenting move I am most proud of. It was a labour of love for my special little boy.

So for World Breastfeeding Week 2019 I want to do a shout out for every mum who gave their baby breastmilk.

Whether it was a few drops or several litres, whether it was directly from the breast or via a supplemental nursing system, whether expressed and given by bottle fed, or tube. I see your pride at the goals you achieved and I see your grief if it didn’t go the way you wanted.

I see your labour of love ❤

It was a little over 7 years ago when I blew out of my office door with a giant belly, proclaiming myself a lady of leisure for the next 12 months.

I sincerely imagined lazy mornings, slow afternoons in coffee shops, baby groups and generally lots of relaxing fun with my baby. Boy was I clueless!

My first baby arrived and I felt like someone had pushed me off a ledge and yelled “fly” in my ear.

There were definitely long mornings at home, and trips to the coffee shop and baby groups, but I was so busy learning how to mother I didn’t really get to appreciate any of it and then my baby was on the move and nothing was relaxing again!

He was two and half when we decided to have another baby.

In the end I never had gone back to work so I imagined our life would carry on much as it had been for the last couple of years. Long play dates, where we drank many cups of tea and days out to the National Trust where we all came home bronzed and sticky fingered from our picnic.

Boy was I clueless!

My second baby sustained a hypoxic injury and our parenting course took a bit of a left turn. It took some adjusting learning how to mother my tube fed baby without breastfeeding, which had played such a big role in mothering my eldest. Learning how to manage his medical needs, the nasal gastric tube, and the suction machine.

Everything I thought I knew had to be unlearned so I could learn again. There were no long playdates, or days out to the National Trust.

There were long days spent with a 3 year old between my legs and my baby screaming on my shoulder.

At the time it felt less like parenting and more like survival. But with time things got better, easier perhaps. He stopped crying so much and we became accustomed to this new life, so we thought we’d have another.

Well this time I’d learned the lessons of the past, this next baby would be whoever they were going to be, I could not control or guess what that might be.

There were no day dreams of what it might be like to mother 3 children, to be honest it was an anxious time.

But he arrived safely, and as third children apparently often do, he slotted in easily and with the 2 oldest at school and nursery finally I was able to enjoy the freedom and ease of a young baby with the confidence of an experienced mum.

I have realised that I am not the mother I thought I would be.

In the last seven years, with my three children, I’ve been on quite the journey. I’m not the authoritative parent I imagined in my first pregnancy, nor am I the earth mother I imagined second time around.

I’ve learned a lot about myself, my 7 year old reflects so much of me! And I realise profoundly that all children are different and require different parts of me and from me.

I have learnt to slip seamlessly back and forth depending on who needs me in that moment.

I think that I am one very lucky mumma indeed to have 3 such awesome boys to love and who love me, and despite taking that alternate route 3 years ago, I strode home from the school gate today very proud of my little family.

I woke up this morning and went to the bathroom to get myself ready for the day.

As I stood at the mirror brushing my teeth and tying my hair up I read the little card that I had jammed into the mirror frame some 3.5 years ago.

“Keep your chin up and never lose hope because you just don’t know what tomorrow might bring”

This card arrived in one of the many care packages we received in the early days while we were still reeling from Thomas’s difficult start in life and poor prognosis.

When I first read it, for a split second I considered binning it with the packaging it came with. I couldn’t imagine that tomorrow could bring anything other than more of the black hole of despair I was already living in.

But I didn’t, I shoved it into the mirror knowing I would see it every day and hoping that its flowery optimism might rub off on me.

In the early days I mostly ignored it,the optimism just made me angry. But at some point I stopped making an effort to ignore it, and on days where it all felt a bit harder I’d make a point of reading it.

This morning I read it and smiled to myself.

I love that, after so long of living in the moment, I can finally look ahead to tomorrow. And that actually never mind tomorrow, I’m quite happy to be right here, right now.

I’ve come a long way. Those first 6-8 months are a blur, I remember only snippets.

I remember Harrison saying “Mummy is never happy anymore”.

And I remember thinking, “No I’m not kid, I don’t think I’ll ever be happy again.”

It seemed impossible to have had your life snatched from in front of you and to possibly learn to live again. I had resigned myself to endure it. But somewhere along the way things started to change.

The sun started to shine, and it burned away the shadows and cobwebs.

Also, Thomas began to settle a little and we started to see glimpses of his little personality.

And finally, I started to feel that feeling they promise you at birth, the overwhelming love.

It didn’t hit me in the way they promise, it snuck up on me when I wasn’t looking.

And now? Now I am the proud mumma of 3 awesome boys.

Now I have started to rebuild our lives, it looks a little different than before, but the main thing is that it still includes love, happiness, laughter, joy, and hope.

I can hear the sound of my three boys downstairs getting ready for the day, music playing, paw patrol blaring, the blender going.

It’s noisy, it’s chaotic, it’s messy and I still have the odd dark day, but it’s my family and I love who we are.