The ever changing self

I have felt so much hurt and pain in my lifetime. I’ve been through abandonment, heartbreak, loss, family struggles and so much more.

These have all shaped me and changed me along the way. I mean we can never truly stay the same as everything around us changes from day to day.

Events, people, and experiences all contribute to our growth and our personality. Going to University, getting married, becoming a Christian, leaving home.

All these things helped form another version of myself contributing to who I am today.

That all being said, no change has been as dramatic and fast paced as becoming Mummy to a severely disbaled child with ongoing health needs.

Being a mother and carer to Zachariah has been my biggest change to date. More so the last 12 months.

I struggle to know who I am. I feel slow in the adaptations as I struggle to keep up with my own emotions throughout the change. I have lost more, but gained more over this period of time than ever before in my 29 years of life.

I have extreme highs, where I have so much to give. I feel on top of the world and feel purpose.

This summer has been a particular highlight, as I had my boy home with me,  felt in control.

We had fun together, we did new things, we relaxed together, and we stayed healthy! I felt I had the power to keep Zachariah well as I was his sole carer.

I knew everything and could intervene from just the smallest of symptoms.

I felt purpose of being his Mummy and carer, I knew what my role was and who I was meant to be.

Then came September. Second year of school. My boy, who I had spent so much time with was now going to be away from me 7 hours a day.

The walls literally came crashing into me, making me feel claustrophobic and anxious. I was in my head too much, I felt anxious as I thought about Zachariah at school. I lost my identity.

I began thinking about finding a hobby, finding a job.

As before the summer I had dropped everything due to the struggles of juggling everything, I needed time out as I began to feel traumatised from Zachariah’s recent health scare, which I blamed myself for, as I took my eye of the game and became too busy to keep up with all of his needs.

I was exhausting myself. I still am!

I’m confused as to what I am meant to be doing with myself. Where do I begin? Who is Rochelle besides being Zachariah’s Mummy and Tims Wife.

I feel like I have exhausted my friends with my constant need to feel worthy, I have become a bit too much for those around me, as the need to care for someone whilst Zachariah’s in school is overwhelming.

I can’t get a job. I’d either be fired or I’d experience a huge mental breakdown.

I’m struggling to take up hobbies, as errands tend to get in the way or the walls come crashing again and I panic about leaving the house.

Friendship is all I need right now, and I will never take this for granted.

I know I’ll be OK. I know this is a season. And I know I am not the only one feeling this way. So please reach out to friendly face if you do and talk through it.

Find your identity once again, it’s there, it’s just ever changing.

Learning to Accept Kindness

It was always a plan to go back to work once our baby was in school.

It was always a plan to find my place in the industry and do something I love whilst earning.

With a lot of you in a similar boat, you will know the strong feeling of disappointment and unknown belonging when that time comes but you are restricted by your child’s health to go along with the plan and get back into work.

This has come with many restrictions.

Finance is tight, and there are many boundaries when it comes to enjoying life if something costs.

I often get the stern eye from the husband when I have had a cheeky meal out or spent too much in Debenhams… please tell me I’m not the only one?

A huge barrier has been getting Zachariah exactly what he wants and needs. We just cannot afford it with one wage and the DLA benefits.

We have had to rely on the kindness of others to help us through difficult times.

My in-laws have helped us with donations and our friends and the wider community have pulled together to raise important funds for Zachariah.

Around 4 years ago now, when Zachariah was approaching his 1st Birthday, it became apparent that he would need a Wheelchair.

The pram was not supporting him enough and soon would be too small… Yes, he was a big lad! Due to our area, this was not something that would be funded until he reached Pre School age.

With no hesitations, our close friends and church pulled a huge fundraiser together and raised around £4,000.

Zachariah got the much-needed wheelchair plus other amazing pieces of equipment such as the well-loved GoTo seat!

It was extremely emotional watching everyone come together and bring a little something to create a successful event.

At the end of last year, we were blessed with an adapted property from the council. With a name like ‘adapted,’ you would think this would include the garden…

However no luck, the garden is an absolute shambles with every flag being a different level and angle. After spending so much doing up the house, and myself struggling to do the little work I had been offered, it was financially impossible to pay for the garden to be done up.

I thought about fundraising but didn’t want to be judged as we had already been so blessed as a family.

However as people began to hear about the garden, they automatically wanted to help and yet again another fundraiser formed.

Whilst in planning and advertising, a charity popped up and wanted to help.

They visited us last week and pledged to do our whole garden! I was utterly amazed and overwhelmed at the generosity.

We are having Zachariah’s garden completely transformed to suit his needs and monies raised at the fundraiser will buy a portable hoist to allow Zachariah access to all parts of the garden including the swimming pool/hot tub.

I have learned that people want and love to help. And when people offer it is best to accept with gratitude.

It is not naturally easy for me to receive help, I guess there’s the voice in my head telling me that I should be the one to give my son everything he needs, however, I have had to overcome this pride as there are so many beautiful people out there who love to give and help others.

These people are truly amazing and we owe them everything.

I guess it’s similar to compliments. They can be so difficult to digest.

I was approached recently by a lady at church, who wanted to tell me how much she believes I am doing an incredible job with Zachariah and any doubts I have about this should be thrown away.

I truly did not know what to say. I end up feeling quite embarrassed and anxious.

I haven’t worked out why, but I guess sometimes we can struggle with the attention when we focus so much on our children. It isn’t natural for us to hear kind words about ourselves.

In these situations, we should embrace them and thank the person for being so kind.

As kindness should be celebrated and encouraged. It will overshadow those negatives if we take time to focus on it.

Whether it be words or acts of kindness, learn how to accept them as some people really are for us not against us.

Much love,

My Daily Miracle xx

When the Future Draws In…

Most diagnosis meetings we’ve had have gone a bit like this…

‘We won’t know how it will affect him so we’ll just wait and see…’

Right at the beginning, when I was around 28 weeks pregnant during a scan, Zachariah’s brain was seen to have clearly stopped developing.

There we parts missing and other parts not quite formed properly.

Termination was spoken over us too many times to count as we were told our Baby would not survive or would live a very limited life.

Once we made it very clear we were continuing with our pregnancy they began to tell us they could not tell us what life Zachariah would lead.

It is was unknown and there were lots of unpredictable outcomes. This kind of conversation was one that would continue throughout his life.

When he was born the diagnosis journey began. Every meeting, test, therapy came with something new.

First, it was he was blind.

“We will never know what Zachariah will see”

Then it was Lissencephaly

“We do not know what he will do.”

“We do not know how long he will live.”

Then came the Scoliosis

“His curve may worsen, and surgery is more likely than not, but we will just have to wait and see.”

Then somewhere amongst the chaos came the diagnosis of dislocating Hips!

Despite the early intervention of physiotherapy and equipment, Zachariah’s hips have been gradually dislocating, so much so that over the last few weeks the left hip has completely dislocated and is causing Zachariah so much distress.

After an X-Ray and consultation, it has been decided that an operation may need to happen sooner rather than later if the pain doesn’t ease.

With Zachariah being non-verbal and already a very unhappy boy when being changed, it can be challenging identifying the pain, however, the last week has been incredible pain that cannot be missed, he’s screaming and flinching.

It has been awful to witness such discomfort that I cannot sit around. I’m hoping that with a few more professional opinions we can create a plan moving forward.

I feel like our future has come too quickly. I remember his physio telling me she was concerned and had referred him, and I remember the first consultation with the Orthopaedics too well as it really wasn’t that long ago.

I remember him telling me that surgery may be a thing of the future but that is in the very far future.

why is it that when Zachariah is just short of 5 years old, we are having this conversation. What happened to the waiting the room, the observations.

It all feels like we’ve been fast forwarded… Where’s the pause button!?

Help! I can’t breathe!

It has no doubt become all too much for me, and it’s clearly too much for Zachariah.

We feel unequipped. We feel like we’ve entered such an impossible road. We feel it’s all happened so flipping fast.

One minute it all laid back and what-ifs, the next I’m witnessing my son go through something so painful and cruel.

I remember a similar, less severe panic when Zachariah suddenly declined during meal times and we desperately needed to get a Gastrostomy. I remember the anxiety about surgery and the newness of it all.

Now… Hip surgery is a whole new level, so you can just imagine my overthinking brain right now. It’s just too much!

The future can be an exciting yet scary time.

It can be unpredictable and sometimes too much to think about. I have started to learn how to manage my emotions whilst thinking about the future and tried not to dwell but focus on the possibilities.

I feel Drs have tried to guess one too many times with Zachariah and wanted to predict his future, but in the same breath, they have been quite blasé about it all with their vague explanations.

It’s very confusing and distressing. It’s much more healthy to talk about happy things, please read my next blog to hear the high and the shrieks :).

Much love,

My Daily Miracle xx

What is LOVE?

Love is ‘a great interest and pleasure in something’.

Love is measured by reaction, dedication, and mood.

Love is real.

Love is happiness and joy.

What is LOVE to Zachariah?

Zachariah finds pleasure in many things in life, from hearing my voice first thing in the morning and getting up for the day, to snuggling up in bed in the evening listening to his favourite story and prayers read by Daddy.

Zachariah shows love by smiling, giggling, shrieking and flapping/kicking. His little face cannot get brighter when he is doing something he loves.

Zachariah loves to socialise…

Whilst patiently waiting for the Drs during one of our AnE trips before Christmas, a volunteer peered through the curtain,

‘Can I say hello?’ he asked.

‘Of course’, I replied, ‘he’s just woken up and feeling brighter’.

The gentleman cautiously approached Zachariah and asked his name.

‘Does he understand?’ he later asked.

‘I would never say no, but I am unsure on how much he takes in, nevertheless, he loves meeting new people and socialising’ I responded.

On that cue, Zachariah smiled and began chatting the volunteer, who continued to ask questions around Zachariah’s abilities and interests.

He sang to him, played games and made Zachariah a very happy boy, after what had been a traumatic day.

(A day of 2 failed rescue meds, dramatic time in resus and a 40-minute catheter insertion- not that Zachariah let this knock him down).

A stranger had taken the time to get to know Zachariah and engage with him in a way Zachariah could understand.

Zachariah is definitely a child who knows he’s gorgeous, who flickers his eyelashes when anyone says ‘hello’ to him and gives you a beaming smile when you take time to chat with him.

He accepts anyone into his inner circle, as long as you give him the time to interact with you, and enter his world.

We all have our own world, our safe space, it may only be those closest to us who really see the true foundations of this world, but with a little patience and interest, you can get to know Zachariah’s world.

I feel truly blessed to have a VIP pass into his world, it’s full of joy, strength, humour, and perseverance.

Zachariah loves people

When I come into Zachariah s room in the morning and say hello… He smiles.

When daddy comes home from work in the evenings and asks about his day… He scrunches up his body and face, gets ridiculously excited and smiles.

When hIs PAs arrive, he gets giddy. He loves people surrounding him. He knows he’s loved!

Zachariah loves someone who gives him the time

Patience is a skill, a skill I need to consciously work on. When Zachariah was a very young baby, we went through the heartbreaking diagnosis of Zachariah being Severely Visually Impaired (Blind).

We were told we may never know how much he sees, but it would never improve as it was all linked to his Neurological diagnosis of, Lissencephaly (smooth brain).

It wasn’t until Elaine, from Blind Children UK that we found hope and began a journey of play and communication in a way we had never known.

I began to see that the more time I spent with him, and the longer I waited for his reaction the more interaction we developed and the stronger our relationship became the more I understood Zachariah.

It is now my role as his Mummy, but also his advocate, to teach others this skill, show them that time truly is precious and the more time you give Zachariah the more rewards you will get from him.

Rewards of relationships, special moments, smiles, giggles and conversation.

Who says that communication needs to be words? Not Zachariah!

Zachariah not only wants you to spend time with him, he needs you to. If someone has time for him, he has time for you, he has the time to react. When he gives you this, the relationship can really begin to blossom, a relationship Zachariah loves.

Someone who has really got to know Zachariah, is his Nana. She has taken all this on, has never said never and really listened to him.

It is not always easy and it can be very challenging, but the rewards are priceless, as his love for his Nana is not to be questioned… It is special.

Zachariah loves School

Zachariah’s school day starts with a ride in Mummy’s car with a bit of Taylor Swift… that’s right, Zachariah is a true Swifty :).

When picking Zachariah up from school today, the teacher began telling me about his day.

‘We have had our feet in the water today… He loved it… But when I tried to put the fake grass under his feet, he very quickly reacted in a way to tell me he disliked it… He definitely knows what he likes and dislikes.’

In addition to this, she went on to tell me Zachariah has absolutely loved listening to her play the flute.

School is a magical place, full of incredible caring staff.

They take time to truly get to know their pupils and treat them as their own. It has a hydro pool, a light room, a dark room, a soft play room and so much more.

All of Zachariah’s favourite activities are available. He loves the choice, the routine and the atmosphere.

Zachariah loves going outside

On Saturday, Zachariah started the day quite grumpy.

Was feeling out of sorts and was very demanding.

Late morning we decided to take a trip to IKEA (more storage furniture!).

The minute we told Zachariah he was going out, his mood changed… And then changed again when we took him to the car. He was excited!

I know he loves these things because of his reactions, his moods, and his concentration.

He has always been very good at communicating this with his close people but has since developed further enabling others to interact more clearly with him.

Take it this way… You know when he doesn’t love something!

Zachariah loves Music, Vibration, Reptiles (much to my disagreement.. haha!) and lots of colourful lights and objects.

Just a nice positive blog to help me I guess through a very dark time, it’s important to remember the JOY. I hope it helps you think about LOVE and JOY.

Much love,

My Daily Miracle xx

Working Carer – Can it be Done?

In the summer I was offered some paid work alongside my voluntary work. I initially said no.

Life was too unpredictable to hold down a job.

I was struggling with everyday life as it was, due to exhaustion, sleepless nights and the demands of the complex medical world, It just didn’t make sense.

However I had wanted to go back to work at some point, to regain independence and also contribute to the family finances.

With the idea that this was just a trial, I changed my mind and decided to give it a go.

My confidence and general faith in myself was visibly low, but the people around me gave me a push and sent some positivity my way to get me started.

I remember feeling so lost, as I tried to remember how to put my working head on.

Separating my home life with work life was pretty much impossible. For a start, Zachariah was, and still is, very demanding, and needs to remain priority.

But also, because my work linked directly to Zachariah, as we are an organisation who advocate for families like mine.

The beauty of this, was I had some understanding coming into it, I had our story, and our experiences.

What I did not have, was admin experience. That would have to be a new journey to dive into it.

With a little helping hand from the technology wizard, aka, my Husband, I managed to do the basics of the job, and my skills are developing nicely.

I’d love to tell you that it’s all going well, but reality is, I’m a crap employee!

I cancel!

I’m late!

I’m scatty!

I miss things!

I get called away in emergencies!

It was only Monday last week (28th Jan) that I had to grab my things and run to my car and head to school to an epilepsy emergency.

In that moment all I can think about is what state Zachariah is going to be in once I arrive.

Will he still be with us? Sounds dramatic to those who do not experience seizures, but when you live alongside such a nasty thief, you really do get to know your enemy.

The job is literally the last thing on my mind, which is what makes me an awful employee, but instead a caring mother.

My son comes first and always will.

This emergency led to a day off on the Tuesday as he couldn’t go into school. The guilt of leaving my boss to do our busiest day of the week was huge, I felt awful.

This then created an anxiety attack this morning (Monday 4th Feb).

Whilst driving Zachariah to school, I felt this huge knot build up in my throat, I began to shake, and my breathing got heavy!

Trying to hold it together as I needed to get us there safely I focused on everything but the huge attack I was experiencing.

I didn’t understand why!

Panic attacks usually are a result of worry, stress or anxiety. I felt OK?

As I arrived at school I saw Zachariah’s VI teacher, we chatted, and it all started to unravel.. I was anxious about leaving Zachariah at school.

I was worried about his quality of life.

I wondered whether work was worth it, should I not just keep my boy at home? Mondays are always the bad news day, the day I receive the phone call, so why bother sending him in?

My day didn’t improve… The more people asked if I was OK, the more I felt not OK!

This affected my work. I told my boss how I really felt about working, I feel unworthy of the role.

I’m unreliable.

Reality is, juggling work with my already chaotic life is extremely overwhelming and quite frankly making me dizzy.

I love the idea of working, earning my own pennies, I enjoy what I do, and have absolute desire to do the job and have the passion to go with it.

I put my all into it (well, I’m not sure this is true, as half of me is asleep most of the time).

Needless to say, I have managed to plod on and stay in the job.

How? Because I am surrounded by people who get it, my boss is full of compassion and knows the demands of my life, as she also experiences similar challenges within her own family.

Patience and time is the biggest gifts within our group. We have to be gracious with one another.

This is not something I believe is common. As I know for a fact, if I worked elsewhere I would have lost my job by now.

So why is it, that it is so difficult for Parent/Carers of children with disabilities to find  jobs? The answer is, there is too much pressure and not enough flexibility.

Now, I know this is not the case everywhere, as I know a few parent/carers who do manage to work, and do so very well, and are given grace.

However there are more families who are financially struggling and parent/carers are becoming mentally unwell as there is just not enough on offer in the world of jobs.

I also understand that some families just cannot juggle it.

I’m getting to that point! I always said that the minute Zachariah suffers from me working, I’ll stop. And right now I’m sitting on a very wobbly fence, as I am not 100% available.

I’m rushing to appointments unprepared, I’m leaving medication orders late, and almost running out!

I’m grumpy and tired a lot of the time, therefore Zachariah must feel this.

I feel too stretched. I feel it’s now time to reevaluate my life and structure it better to suit our family.

As money isn’t everything!

Now, this doesn’t mean I’ll quit, it means I’ll look at my hours, my voluntary work and my other commitments. See what I can do to help me stay in work.

And if it comes to the point where work is causing too much chaos, I can look at leaving.

What I would also like to add to this is; I have found myself getting quite jealous of my husband. He goes to work and pretty much gets left to focus on that.

It’s only been extreme measures that he has had to leave work. Like the time Zachariah needed surgery, and the time he ended up in resus!

Whereas for me, I have to be available 24/7 for Zachariah. It’s me that has to leave work, it’s me that has to cancel hours due to appointments, and leave early to arrange meds.

I know this is the way it needs to be, Tim is the main earner, but sometimes it gets to me that I have nothing else that is just mine, something that I can put 100% into.

Things are harder to digest when you know you can’t change them.

This is the way it needs to be right now.

Much love,


My Daily Miracle xx

Finding Out my Husband Isn’t a Superman!

Tim is Zachariah’s hero. He adores him.

Tim is my rock. I rely on him.

As Zachariah has gotten bigger, the logistics have had to change. We rely on our newly fitted hoisting to shower, change and put him to bed.

We rely on his sensory equipment and music  to soothe him rather than cuddling him and have had to become inventive in our ways of enjoying time with him without having to lift him.

It’s hard, we hate it. But reality is he is just too heavy to throw around.

Tim and I aren’t particularly built for lifting, but Tim has never let this stop him, well neither of us have, we break the rules and continue to pick Zachariah up for a cheeky cuddle.

Tim has never thought about it when he’s needed to lift him in emergency situations, or in non emergency circumstance to be fair, as the house isn’t 100% adapted, we do still have to lift, especially in our living room, as well, we live in there!

But we share this as best we can. However when I’m having a bad back day, Tim would always pick up my slack.

He never moaned. Never really thought too much into it to be honest.

He enjoyed his special Son time and loved a good cuddle.

This setup was recently taken away,

Last week, whilst Tim was at work, I received a text from him.. “I need to show you something tonight”.

Now without giving too much away, I saw this text as a good one.. Wink Wink.

What I did not expect was for Tim to come home and show me a lump!

A very sinister lump!

Keeping my practical head on, I told Tim not to panic, but to book a GP appointment first thing in the morning and get it seen to.

After a very long night and morning, Tim’s Dr gave us the information that we were shocked by, he had a Hernia. A Hernia from lifting Zachariah.

With the advice to prevent lifting Zachariah, and await the letter for a referral for surgery, we were left a bit shell shocked.

My image of Tim being some kind of superhuman had been shattered.

He had always been the one to just do it, just lift Zachariah. He had been the one who came home from work and just did what was needed.

With my back issues, and now Tims Hernia I feel sad that we are not strong enough for our son. I feel our bodies prevent us from giving Zachariah everything he needs.

Some may say this sounds dramatic, but a cuddle is everything to us with our boy, he cannot just walk up to us and wrap his arms around us, we need to lift him and position him on our laps for such a precious moments.

There is a need for us to create special moments with Zachariah.

There are so many other situations I could go into that will now need to be re thought out.

Such as lifting him out of his bed/wheelchair when he’s leaked, lifting him onto the mat for physio/ relaxation time, and putting him on the sofa for story time!

Reality is, hoisting doesn’t fix all lifting needs.

We have had a huge reality check over the past few weeks, as we realise in even more detail that our son has severe disabilities, and life isn’t going to get any easier.

Reality will be a little harder for a while, Tim needs to be cautious. Then he will need to take time out for surgery. It’s our time to look after him.

Now my title isn’t completely true, I may have told a little lie, as supermen don’t need to lift, they just need to love and care. They need to be there for their family.

This is Tim.

He is still and will always be our superman.

He loves us unconditionally.

He is selfless.

He will fix anything that needs fixing. He does all those annoying jobs that no one wants to do!

He works hard to support us financially.

He is our Superman!

Much love,


My Daily Miracle xx


I was going to write a blog titled “Please don’t ask me what is wrong with my son”.

But as I thought about it and looked into the situation I encountered this morning, I realised that people aren’t always bad, they don’t set out to upset you, they may just be interested and/or generally care.

I found that I can make a difference by my response and that I shouldn’t get too caught up by words.

Today was a snow day. With school closed, me unable to go to work and a whole day ahead of us, I thought it would be a lovely opportunity to go on a walk!

I have recently moved house, in a new unfamiliar area, and still getting used to it.

I feel like I’m in a new country! I know.. you know.. I’m dramatic!

But reality is, I had lived in my previous village all my life. People knew me, they knew my family, they knew Zachariah.

I could go for walks and people would approach us, chat to Zachariah and ask how we were all doing. I could pop to my friends house.

I could pop down to my Church. Everything was familiar.

So when the snow caused chaos today, I missed being in my old house, I felt lonely and isolated.

The great news was my new friend and her son, a boy in Zachariah’s school were also wanting to get out and enjoy the snow. This lifted my mood as change doesn’t always need to be a bad thing.

We got all wrapped up and headed out.

I hadn’t got far when a friendly neighbour and his kids started a conversation with me.

I had always been too busy to say more than the polite greetings, however today I had time to get to know a neighbour a little more.

The beginning of our conversation went a little like this..

“Whats wrong with him?”


“Whats wrong with him?


Whats wrong with him”?

“Oh.. you mean what disabilities does my son have?”


Of course I had heard him the first time, but maybe didn’t want the use of words to be true.

As I never look at my son and talk about what is wrong with him.

There is nothing wrong with him. He has disabilities, but don’t we all? I kept my cool and took the opportunity to talk about Zachariah, focusing mainly on his cute face and infectious smile of course!

But I did explain that he has epilepsy, needed a wheelchair and a feeding tube.

The gentleman then went on to tell me how he understood and had been through many challenges and heartbreak himself.

He is a lovely man, and appears to have a huge heart, as he told me to never hesitate to ask for help, if ever we needed it.

But his use of words had put me off and had triggered me to have a defensive manner. Especially when he went on to say this..

“I knew something was bad over there as I always see lots of people coming in and out”.

(They would be professionals, and they would be our support network! I wouldn’t have said it was something bad).

I tried to explain that Zachariah lives a great life, he has struggles, but is always smiling and enjoying the things he loves like family, school, music and of course his walks! I tried to ignore the pity eyes, as I knew this gentleman meant well.

Sometimes we can get so caught up with words. Whether it be words to describe someone/something, words to create questions or words to start a conversation.

Words have to be learnt. So if we meet someone who may have a completely different vocabulary we are bound to find differences in the way we speak, however it doesn’t necessarily mean that we are right.

We all have preferences and different use of language which may differ to the next person.

The lesson I guess I have taken from this is to seek the heart first. It is then we can educate people on disabilities and speak back how we would prefer to be spoken to. With us all wanting different wording, and having our likes and dislikes from the dictionary, we cannot expect everyone to know exactly what to say.

I read an article recently about how people with Cancer would like to be spoken to, and how they wish to be addressed.

Each person had their own preference. Some like to be seen as a fighter, others don’t.

It is similar I guess with families who have disabilities, so I guess it can be difficult knowing how to talk to us.

I guess our mood/emotion that day may provoke more upset too!

If we’re grumpy from a bad night, there’s little chance that we will tolerate someone asking us a question we believe to be wrongly worded.

Needless to say I will continue to talk to my neighbour and hope that over time they will begin to pick up on my words and use them 🙂

If not I will continue to focus on the heart behind the words! 🙂

Much love,


My Daily Miracle xx

Who Is That in My Home?

Accepting you need help is never going to be easy.

You don’t want to come across like a bad parent, you are terrified of the social services and you are conscious of what others may think about you.

Well I was anyway. I saw it as a sign of weakness that I couldn’t care for my own son.

But the truth is, I could care for my son, but not care for myself at the same time.

There was no weakness, but pure exhaustion, as my mind and my body began to tell me over and over again that I could not keep going the way I was.

And there was the reality that my son was too complex for me to care for alone in the week when his Daddy was working.

For the time being anyway, whilst we waited for a more suitable home, and for Zachariah to start school.

The strains of an unadapted house were affecting my physical health.

The increase in seizures meant I could not leave Zachariah unattended, not even for a toilet run some days, (you soon learn how to hold it in).

The therapy was too much for just one carer as he has grown so much.

Things were changing, but I was not able to keep up with it.

Just putting Zachariah in his standing frame is a huge job, which leaves me feeling rather tired afterwards.

For Zachariah to continue having all his needs met, and for me to not run myself to the ground, I needed to get some help in the home.

Summer holiday were approaching, and I just knew it was the time to request PA hours.

He would be leaving nursery and would be at home with me for around 8 weeks.

So, I had the assessment done and was delighted to be awarded weekly PA hours.

It was so strange, but I knew only good could come from it. I selected 3 close people who know Zachariah really well and started in July.

It was overwhelming and extremely hard to accept that it was happening.

Having someone in my home is definitely going to take some getting used to.

Not to mention the training!

Trying the teach someone how to care for your child is harder than I thought it would be.

But I guess that’s because we don’t necessarily think about what we are doing, we just do it!

Then there’s the trust you put in others.

Every time you leave your child with a new person or at a new place, it will more than likely come with more worries and concerns.

When we first left him at nursery and at Derian House, I had similar worries, and anxieties.

As you don’t truly believe that anyone else can care for your child the way you do.

But I’ve been proven wrong a few times now, and seen the rewards of Zachariah spending time with other so it has gotten easier for sure.

And not forgetting the confidence you need to help others gain when looking after your child. I know our PAs struggle with this.

They do not have the confidence in themselves in particular areas to truly be the best carer for Zachariah.

But hopefully with mine and Tim’s help they will develop this.

Which can be a challenge where you also doubt yourself.

Even after 4 years of dealing with seizures, I still get anxieties now.

I worry about the next seizure and if he’ll need rescue meds.

So, to try get his PAs not to worry too much is quite hypocritical.

But the main thing is, the beginning of this new chapter has been a great one.

Zachariah is really enjoying his time with some of his favourite people, and I am starting to see how I can get some respite and do some work with him being looked after properly.

We just need to adjust a little, and allow the PAs to settle in nicely to our family.

I am now not ashamed to talk about it. My four-year-old son has 3 PAs and that’s OK!

Because my son also has disabilities, complex medical needs, plenty of appointments to keep us busy, daily therapy routine, feeding issues, and sensory needs.

If you are struggling, and are worried what others may think, I really hope this gives you the courage to step out and ask for help.

I have no regrets.

Much love,

Rochelle (My Daily Miracle) xx

Room For Seconds?

“He’s never going to do that!”

“We won’t be able to achieve that.”

“You can’t stop that!”

“There’s nothing else we can do for you.”

So much negativity.

I can really see the difference when we’re attending a community-based appointment compared to the hospital clinic appointments which are always so negative and unhopeful.

For years now, I have literally just listened to this and let it take over my way of thinking.

I’ve let it doubt my hopes and dreams for Zachariah and possibly let it lead our journey.

I’ve accepted things too easily too.

You put so much trust into these Doctors, and sometimes feel they have more valid opinions than you do.

In one sentence they tell you that you no one knows your child like you do, then in another tell you your child’s future.

This is so confusing for parent/carers.

As I have ended up feeling unqualified of being the person who knows Zachariah the best, as Doctors have already written his life story and not been too shy to share it with me.

My head hurts just typing it out!

I also feel Doctors can be set in their way of thinking, and not allow room for other possibilities for a patient.

As Zachariah has grown, developed and changed, I don’t feel much has progressed in particular areas.

Epilepsy is just accepted!

The fact that Zachariah continues to suffer with seizures day and night has somehow become the norm.

The way Zachariah is fed had also become the norm.

With many other things also becoming part of the furniture.

It’s not until fresh eyes examine that new ideas can be suggested.

With this in mind, I’ve been speaking out and asking for new Doctors to take a look at Zachariah and give him a full MOT service so to speak.

I know he’s not a car, but for my brain to process things, I sometimes look at his areas of needs in this way and look at how we can work on them.

With all the talk of Cannabis Oil in the news, seeing how people’s lives had been changed, I had to question our epilepsy journey.

For a year now, we have been told nothing else can be done. I could not accept this.

Last week I met with a new Doctor.

And I could not be more pleased!

To quote my Auntie, ‘He was just so caring, and knew exactly what he was talking about, he really wanted to help’.

He told Zachariah that there was hope to reduce his seizures and only a few avenues had been explored.

We sat and listened to all the information and have come away with a lot to consider.

This Doctor will not know what he has done here, but he has regained our hope, he has given us new opportunities to make Zachariah healthier and happier.

We will be looking into new diets and surgery.

There was a time when the word surgery would terrify me.

I wrote about spinal surgery the other month (which we are still waiting for), and the emotions and anxieties that came with it.

But being Zachariah’s mummy means that I have to quickly adapt to things, and process them in order to keep up.

Zachariah’s needs are always changing, even from minute to minute, therefore an open mind is absolutely vital.

It’s like having another me on the outside, monitoring and questioning everything in Zachariah’s life.

This other me needs confidence to speak up, and own her role as Zachariah’s mummy, and the energy to start a fight when necessary.

This other me had to really put her big boots on recently.

A service was neglecting Zachariah’s needs and things had gotten out of control.

No aims were being met, no goals were being set and things were being left.

With a young boy suffering at the midst of it all.

I had to act and remove him and refer him to another service.

I have no idea if the grass is greener, as we now sit in limbo, waiting for the referral to be accepted.

But sometimes risks need to be made.

I can’t keep worrying about upsetting people, and feeling awkward when speaking up, as at the end of the day, there’s a boy who needs me to advocate for him and ensure he is getting the best out of his life!

Be confident in your role, as your role is the most important one to your child.

And your child is your main priority.

Yes, professionals and Doctors have tremendous knowledge and expertise but they do not live your life, see your pain and struggles and they do not have the love for your child to the level you do.

I could write so much more, but for now…

(P.S. I absolutely love the NHS, and have a lot of respect for all those who form it.)