Back in November I submitted a rather exciting blog titled ‘Zachariah’s going to be a big brother’, and had it scheduled to be posted after our 20 weeks scan.

However, this was never published, as our 20-week scan didn’t go the way we thought it would.

The worst happened.

There was no heartbeat.

Our baby had died.

As many of us do, I blamed myself.

The questions started.

Did I strain my body lifting Zachariah?

Was it stress?

Was it my diet?

The only thing I could think of that could possibly take my baby away from me was ME!

Why are we so hard on ourselves?

My guilt didn’t stop there.

As once we had received the news that I had contracted the Parvovirus which had resulted in the devastation, and I was clear of being blamed.

I began to punish myself for thinking I could be privileged with another baby when I had Zachariah to take care of.

I felt guilt for losing so much time with Zachariah whilst I was poorly and tired carrying his baby brother.

I felt guilt for needing time out to grieve and rest after the trauma of delivering my sleeping baby. Zachariah had lost his Mummy, who was there, but not present and available in the way I used to be.

The more I punished myself the more distant I got.

I started to forget important things:

• Appointments
• Meetings
• Things that I needed to chase
• Things I needed to pick up
• Paperwork
• Groups
• Playdates

I started to slack with physiotherapy, visual stimulation, play.

I was living in a very dark cloud, I was not only grieving over my baby, but feeling like a rubbish Mother who had also neglected her big boy.

The vicious circle got bigger as I tried to juggle the everyday things and prepare Zachariah for school by working on his EHCP.

I very quickly tired and needed space.

I almost found myself regretting the decision we had made to have another baby, and for believing that we could manage two children.

It was incredibly difficult and I couldn’t see a way out.

People would praise me on how well I was doing, and how well I had continued to keep up with the busyness of life being Zachariah’s Mummy.

But the reality was, I was barely keeping my head above waters.

4 months on, I am just about beginning to find myself again and releasing my advocate, caring role back out and getting my head back in gear.

I am being the Mummy that I have always aspired to be.

I’m getting my drive back, my passion and enjoying precious time with my boy.

Tonight, a friend told me that I haven’t lost time with Zachariah, as I haven’t completely gone anywhere.

And I shouldn’t focus on any time lost, but the time that I have had with Zachariah and how special that time has been, and the time I have to look forward to.

I needed to hear this and feel I can now move forward.

Remembering baby Ezra whilst being the best I can be for Zachariah also.

Grieving a baby whilst being full time mummy and carer for your other child is unbearable, and I pray that anyone else out there going through this finds peace and hope in the darkness.

Ezra will always be a part of our family.

I bet that every single one of you reading this has either said this statement or had it said to you.

It’s an, ‘I don’t know what else to say’ kinda statement isn’t it?

I must admit, I may have said it myself a few times, when I’ve really not understood how I would walk in someone else’s shoes.

Reality is, we all walk in our own boots, we all sometimes need plasters to heal blisters now again, or even need a new pair at times in order to carry on with the struggles that come our way.

Needless to say I’ve chucked a fair few pairs away and started again with a new strut to go with them.

This saying has been said to me a lot lately, which is why I’ve decided to talk about it and give you all a new way of looking at it, and maybe make you think before you say it, and for those who have it said to them, I just hope you can relate and take something from what I’m trying to express.

In life we all reach points where we have to make decisions, we all go through trials and challenges, we all have our ups, our hopes and times to reflect.

A huge decision my husband and I made was to try for a baby back in 2013, so just like millions of other couples we wanted to extend our family.

We knew it was going to be life changing and accepted that whatever the baby needed they would get, and we would go through life a day at a time.

Now, at the time, we didn’t realise how life changing it would be, but who are we to say that our expectation vs our reality was much different to the next set of parents?

What I’m hoping to get across here, is that every single child that enters this world, besides being an utter blessing comes with their own challenges that may determine the way that family live their life.

For us, our reality was a lifetime supply of hospital appointments, therapy, medications and a whole lot of health worry. Our reality was wondering if the next seizure would be life threatening or not.

I could not tell you what the next parents’ reality is, but I know that we all have something in common, and that is that we are parents to a child/children and we all have something to worry about.

We all want the best for them, and get anxious when we feel they are unwell, unhappy or struggling.

In my friendship circle, yes I stand out as the one with a complex child, but I also fit into a crazy bunch of mums trying to do the best by their child.

Each one of us have worries and are pushed to our limits at times as we are tested by the harsh difficulties that we face.

Some of these may be health, education, or behaviour, whatever they are, they are important to that family. We do it because we love and cherish our children.

Now, I’m quick to admit that I need help just like the next family, and I have days that seem too hard to get through, but there is always a gorgeous boy sitting in front of me to kick me up the bum and crack on with it.

So to answer that controversial question…

I do it because I keep open minded and try not to guess the future, Zachariah will lead the way, and Mummy will be there to catch, push, cuddle and praise.

I do it because I chose to be his Mummy and I am not about to give up on that now.

I do it because I love and cherish my son, and he relies on me and his Daddy to guide him through life. I’m pretty sure my friends would have the same answer when they are confronted with this question.

I do it because I wanted to be a Mummy and chose to have my wonderful little boy.

Challenges, worries, grief will always be there for sure, but the key is getting through those and staying on board the parenting/carers train.

So next time you think about asking this question, divert it into words of encouragement and let them know how much of an awesome job they’re doing :).

Lots of love, Rochelle. (My Daily Miracle)

It made me look back to our decision and the fears that came with it.

It’s been a whole year now since he had his surgery and I cannot believe how life changing it really has been.

I almost look back and wonder what all the fuss what about, but the truth is that everything new can seem so huge and unbearable to process.

The biggest reason for deciding on the gastrostomy was his aspiration that was leading to one too many chest infections and making Zachariah’s life too much of a struggle.

Last winter he experienced around 10 chest infections in such a short period of time, whereas this year, bearing in mind we’re nearly entering December, Zachariah has only had 1 infection and has been keeping incredibly healthy.

It’s just so amazing to see such positive results from something I could never imagine for my son.

The hurt I felt over not being able to feed him has almost disappeared as I see him looking so well nourished and able to enjoy his life more easily.

The fear over how I would actually manage the pump and tubes themselves very quickly vanished as it is so much easier than I ever thought.

In fact I would go so far as to say that it’s easier now as we can set him up on feeds and carry on with activities whilst the milk is nicely pumped straight into his tummy.

We are spending less time struggling with food and more time enjoying the things Zachariah loves.

Now, I’m not trying to sell this to you all, as this is a medical urgency that was presented to us through Zachariah’s struggle with oral food, this is a celebration of Zachariah getting everything he needs safely and less traumatically.

It’s almost an anniversary of safe feeding as I look back at how far we have come from our decision to tube feed.

I’m hoping to put all you at ease, who may be starting those very difficult conversations with your child’s consultant.

If this is you, I’d like to just give you some advice.

– Ensure you write a list of questions for your meeting with the consultant/surgeon. No question is a silly question, so make sure you ask everything that is important to you.

– Take someone with you for support and an extra pair of ears, as if you’re anything like me, you’ll forget half of it.

– Make sure you understand the procedure, (ask for diagrams if necessary), the aftermaths of it and the logistics of it all when you get home. There are some great groups out there that can give you advice and support.

– Be comfortable with your decision and have your child at the centre of it.

Really hope this short blog will help at least one family and give them comfort that tube feeding is not a scary, lonely world, but in fact of world to conquer if your child needs to enter it.

(The picture is of Zachariah having stories read to him in the library whilst enjoying his lunch)

Much love, Rochelle (My Daily Miracle).

My view was that it was related to fits and there was medication to control it, I couldn’t have been more wrong as it is a much bigger picture than this, and everyone’s epilepsy is different.

Zachariah was just a few days old when he started with jerky movements and from then it took over a year to get a diagnosis and the correct medication.

It’s a blur to be honest as his seizures weren’t too aggressive it wasn’t the main worry at the time.

The meds seemed to be working and keeping the seizures under control, so I had this idea that as long as we kept up with his meds he would be seizure free.

Whenever we saw him progressing seizures we knew it was time to up the dose and we seemed to be winning.

For many this may be their story, however this was a false representation of Zachariah’s epilepsy as we later found out, the hard way I may add, that he had a type of epilepsy that cannot be controlled completely, which may be a familiar story to many of you too.

Zachariah has type 2 Lissencephaly (smooth brain) which means that his brain hasn’t fully developed, resulting in many disturbances, one being epilepsy.

The type of epilepsy that comes alongside lissencephaly is one that cannot be treated fully by meds and is relentless, resulting in many children losing their lives to it. Knowing this absolutely terrifies me.

With every seizure comes a new numb feeling of grief that it could be the one that takes his life. His consultant discussed with me the fact that we need to find a comfortable amount of seizures as they are never going to go away.

You can imagine how shocking this conversation was, how can I ever be comfortable with any seizure, let alone trying finding an amount I’m OK to watch him suffer through daily.

I decided that I would like to pursue more meds in the hope of battling less a day than he is currently experiencing.

The issue with this is, the more meds he takes, the more risks there are in other health areas, such as his liver. And the risk of his body getting too used to the meds.

It’s such a cruel bubble to live in, and extremely difficult to find a balance, as I never wanted to be the Mum who just pumped drug after drug into her son.

But I also cannot stand by and do nothing as my son helplessly loses his battle against epilepsy.

Epilepsy is a humongous pain in the backside, comes with a ridiculous amount of worry and fear and is something we could live without.

It is detrimental to my son’s development and takes away the smile from his face. As a mummy, watching his eyes weep, his face turn and his skin colour change, as he fits is the most heart-breaking thing I’ve ever had to do.

It pains me to see my boyo look so helpless as the seizure takes control over his body. I have become the mum who overthinks every activity as the fear of the next seizure takes a hold of me.

But I try daily to rebel against this fear and enjoy the precious moments. Zachariah is a real superhero who keeps on living a happy life, it’s so important to follow his lead and focus on the good times.

Research is so important into tackling this evil disease, so awareness is key.

Please share this blog with your friends and show that epilepsy is still, very much a huge battle that needs to be won.

Lots of love, Rochelle. (My Daily Miracle)

Bringing the world to my son is something I’ve tried to do since he was a baby, I’ve focused so much on it that it slowly left my mind that one day Zachariah may bring the world to himself.

Over the past few weeks, due to illness and epilepsy we’ve struggled with physio, and although this has been a huge concern, in the shadow of this, Zachariah has spent more time in his chair and has been developing lots of other fine skills that need to be celebrated and pushed.

His hands have been very busy getting messy, creative and holding onto various toys.

This is not something that has happened over night, there was a time when we struggled to undo his fists, but reality is he’s really starting to be intrigued in the world around him and learning just how to use his hands to get what he wants.

I’m currently lay on the floor next to him as he punches my nose and wipes my cheeks with his very wet, stinky hands and I couldn’t be more proud.

He’s aware I’m there from the gentle conversation we’re engaging in, therefore starting to try and find me with his hands.

There was a place, and I remember it well where we would have put numerous toys onto his tray, lap and beside him on the floor and he would continue to stay still without an interest at all.

Whether he noticed it or not, I’m not sure, but there would be no investigation on Zachariah’s part, we would need to intervene and do hand over hand technique to stimulate him into the play and exploration.

Coming from that place feels like such a huge step, as now, as soon as I place anything near him, he opens his hands, finds it, investigates it and either plays with it or slings it on the floor!

It’s incredible just how much he’s developed into a curious George!

Much to my delight, Zachariah is getting better, so the physio is being reintroduced, and Zachariah is full steam ahead!

So much so he’s sat up for the first time ever using arm gators, and managed to do 40 minutes in his frame.

Now I need to make sure we keep a good balance between all of his skills and not lose sight of the things he showing interest in.

My boy is flipping incredible, may he start to lead the way a little bit more with his development.

I guess what I’m trying to express here and why I’m sharing this with you is to remind you that there may be new goals being completed where you don’t expect them.

I’ve been so tied up with  getting physio done that I had almost missed the exciting things happening in front of me.

I have reintroduced a baby play gym to help develop these skills and hope that Zachariah will continue to be curious and bring the world around him using his very own hands.

Keep on teaching me Zachariah! X

So as you can imagine it was a shock to hear that he needed a hearing test before he could be referred to the speech and language team.

Even though I had stated that I had no concern with his hearing, I was told there was no harm in having it done and it was part of the process.

Tuesday 4th April comes round, nice early start, arriving at the hospital for 9.30am. I book him in at the reception and start the waiting game.

A lady calls him in and off we go, all confident and smug!

We enter a room within a room within room, which is all dark and a little terrifying actually.

The consultant quickly rushes in to the audiologist and mutters “move the chair, move the chair..He’s in a wheelchair!”

Great start, I feel even less confident about this as they have clearly not read his notes, therefore are not going to know anything about my son.

The consultant asked me for Zachariah’s difficulties and whether or not we had a concern about his hearing, I reply with his long list of diagnosis and confidently tell them that there is nothing wrong with his hearing.

She grabs hold of the severely visually impaired diagnosis and quickly finds a toy with flashing lights.

I look at Tim and just know that he is thinking exactly the same as me..’why is she getting out eye stimulant toys when we are here about his hearing?..It’s only going to distract him.

Anyway, the test begins!

The audiologist makes noises with different instruments behind him and the consultant sits in front to wait for reaction.

As soon as I realised this was how they were doing the test I interfered by explaining to them that with Zachariahs development delay he can be very slow to react, therefore to be patient with him.

As the audiologist continues to make sounds, the consultant starts to pull faces of uncertainty.

I’ve got to see.. So I interfere again by standing behind the consultant to give me a clear visual on Zachariah.

The next sound is made and instantly Zachariah stills and has his usual curious look upon his face… He heard it and he reacted!

The consultant shakes her head in an, “iffy”, way as if to say she’s not sure.

Once again interfering, mummy gets a little mad and stresses that he’s hearing all these noises and although he’s not smiling he’s reacting through stillness.

After what felt like a very long time, we are advised to get Zachariah to sleep in the waiting room and come back when he’s asleep to do a different type of test which does not rely on reaction.

I had to do this on my lap as they wouldn’t be able to get the device in his ear whilst in his buggy with the head supports. My arms begin to burn, my legs begin to twitch..

My son is not the small baby he once was and was becoming very difficult to hold.

The audiologist takes us into another room and begins the test. To try and cut this story short, the test failed!

A 6 minute test that takes 30 minutes fails due to too much noise and a fidgety boy, the device is unable to get a correct reading, therefore they have to fail him and refer him.

This is beyond frustrating as we know Zachariah has great hearing and with everything else going on we could do with one less thing to be worrying about.

I am writing this blog to share a day in the world of Zachariah and show the frustrations some of these days bring.

And I am not writing to call the NHS or the staff, as they are just doing their job! xx

As you can imagine… I cried!

There was lots of talk about hopefully having Zachariah walk up to the front using the Upsee, but they stressed that they wouldn’t be upset if for whatever reason this wasn’t feasible.

The special part was just having their nephew there at the church being part of the celebration.

My husband and I gave the Upsee a good go, but reality was Zachariah had so much going on that he just wasn’t managing the standing frame, let alone the Upsee.

We told my Brother that he would have to be in the buggy, we would clean it up, and the ring cushion could be placed nicely on his tray.

Little did we know, this was the least of our worries and we would face new challenges of actually getting Zachariah to the wedding.

The day before the wedding, Good Friday we set off to Church and planned to get last minute preparations sorted that afternoon and have an early night. Although, Zachariah had other ideas.

Recently his epilepsy has been out of control and after 1 trip to A&E he had been given a new drug, but nothing was changing, the seizures just kept on coming, one large one occurring during the church service which led to an Ambulance ride to the Hospital!

The consultants came and advised an overnight stay and the prescription of rescue meds to be sorted the morning after.

I pleaded with the nurses to do everything they could to get Zachariah discharged before the wedding but knew in my heart that Zachariah would come first and if it wasn’t advised to leave, we wouldn’t.

Fortunately, Zachariah was discharged at 11am, 2 hours before he had to be at the church, so Daddy did a super job of getting him bathed, suited and booted just in time!

And what a handsome page boy he was! He looked so dapper in his suit.

We arrived and found our place at the front of the church to be confronted with huge, nasty Tonic-Clonic Seizure lasting around 4 minutes. My heart sank!

The pure pain I was feeling was nothing compared to the discomfort my son was feeling but it was painful enough to make myself unable to hold back the tears!

Epilepsy! Could you not stay away for 1 day, and allow my son to be a page boy for his uncle’s wedding?!

Wiping away the tears I had to brave it and walk back up to my seat and wait for the Brides arrival, leaving Tim to comfort Zachariah at the back of the church, who had yet again another seizure, this time lasting 13 minutes.

But he appeared very happy when coming round and gave lots of smiles.

When it was time for Zachariah’s job, Tim wheeled him up and I took him to his place, allowing the Vicar to take the rings from his tray, and then Tim took him back to the back where it was much quieter, leaving me to enjoy the wedding ceremony.

Yes I felt guilt, guilt that I was being selfish, but I also knew that Zachariah was with his Daddy, who could take him home if he felt necessary.

The blessing in all this is that after a huge sleep, Zachariah had a great afternoon at the wedding reception and went on to sleep really well at Nana and Grandads.

Another blessing was that my brother and sister-in-law had an amazing day, I pray that they have a blessed married life together.

This day, however made me realise just how much we are having to cater for Zachariah’s needs much more and it is clear that we cannot just fit into the crowds anymore, but we need to make changes to daily life to help Zachariah.

The biggest change being that we need to protect Zachariah from loud noise and music.

Whatever we need to do, we shall do for our Son. Xx

I feel so armature and far too close to Zachariah to be making such huge decisions regarding his care when he becomes close to the end of his life.

I mean, what Mother and Father want to speak about such things when their son is only 2 years old, let alone write actual answers down on paper.

It’s a heart-breaking and almost impossible task to do.

Despite this I feel it would be a wise thing to start talking about and get our thoughts and feelings on the table now to try and avoid Tim and me finding out how differently we both feel when it’s too late.

In addition to this, I feel it may be good to get it over and done with, lock it up and only get out when the time comes and leave the professionals to follow the plan leaving Tim and I to be with our Son 100%.

As I write this I hear how bonkers it all sounds, my son is upstairs asleep in bed, (well when I say asleep I mean shouting himself to sleep!) and I am downstairs planning what to do when the worst happens.

But is there ever a right time?

My mind is telling me to plan ahead with a straight head and think logically whereas my heart is telling me to make no plan and just fight in every which way you can to keep him alive when that time comes, and then my Motherly instincts are telling me to allow my son to go when he is ready and hope that it’s as peaceful as possible.

You can see how torn apart I am, my heart is breaking that this is even something we need to be doing.

I just hope that as my husband and I sit down to discuss tonight we naturally sync and make the plan as easily as possible and we can find peace with our decisions, as nothing is ever set in stone anyway, things can always be altered.

One of the things to discuss are the funeral wishes we have, and this is definitely something I want to plan now, close the book and forget about.

As this is something we don’t need to make life or death decisions about.

It is, out of it everything, something we can make positive and special, we can take Zachariah’s personality and make an absolutely heart-breaking day into a day to remember Zachariah for the cheeky, smiley, bubbly boy he is.

Now I really do sound bonkers!

For some of you, this may sound ridiculous, but for families like mine, this is reality, the reality that our sweet, precious boy has a life limiting condition that cannot be taken lightly, but is also something we learn not to dwell on.

Thank You for reading this, it wasn’t easy to write, as I sit here with tears streaming down my face, and I imagine it wasn’t easy to read either.

Please feel free to contact me if you are also going through this process, there may be comfort found speaking with someone who understands.

Much Love xx

However I was confronted with the dilemma that they are only available in the America so it was an £18 delivery charge.

This was quickly resolved with having friends who were visiting America who kindly offered to bring them back for us, winner!

I originally wanted them to assist Zachariah with using drumsticks to try and develop on from his usual banging and kicking to drumming using sticks, but I was pleasantly surprised with the opportunities they create, from holding a toothbrush to using a paintbrush.

With disabilities and a visual impairment it is very difficult for Zachariah to grab and hold onto things, and although he has done amazingly well learning to hold onto particular toys, there is still a need for assistance with others, more so with the smaller objects.

Before the Eazyholds we would do hand over hand technique when it came to painting, colouring and writing, and this would leave a feeling that it was never quite Zachariah’s own design, whereas now he can completely get ownership of his masterpieces.

The Eazyholds have opened up a whole new world of opportunities and it is beyond exciting for everyone involved, Zachariah is now signing birthday cards and painting his own pictures.

The biggest change for him has been at nursery, where he can now get even more involved in the activities with all his friends.

Inclusion is just so important to me, and with these Eazyholds it is made more accessible.

Zachariah gets such a huge sensory feedback from using the Eazyholds as it allows him to hold items of different sizes and textures and allows him to feel what it is like to use a felt tip and brush paint against the paper.

His face lights up when he uses them and this makes me incredibly happy.

So now I can give a legitimate review of the Eazyhold grips after using them with Zachariah for a few months, and I can honestly say they are incredible.

Simple, yet so effective and they bring so many opportunities.

Highly recommend them and look forward to seeing what other adventures are ahead of Zachariah, and look forward to pinning up many more Zachariah masterpieces onto my fridge.

It is such a proud moment seeing his creativity all hanging together in the kitchen.

It’s the big things, the small things and all those wonderful things in between.