They got so carried away with the idea of what Zachariah should be, what he should look like and what he should be able to do, that it appeared to reflect that this person didn’t want to celebrate who Zachariah already was.

For a mother to hear these things spoken over her son was the most heartbreaking thing, it saddened me also that they were obviously missing the joy and love Zachariah brings.

Now, being a Christian myself, I value the power of prayer and I know that God can heal, he can change things but I also know that God makes every child in his own image regardless of their disabilities, ‘imperfections’ and looks.

With God there are no limitations and we all have something to make us special and unique.

I believe that we should have hope that Zachariah may one day be healed of his epilepsy and lissencephaly, and I truly believe there is hope that his eyesight will develop, but I also thank God every single day for giving me Zachariah and feel blessed to have such a beautiful son.

It would seem that sometimes people can get so wrapped up in what they believe things should be like that they completely miss what is shining right in front of them.

There is so much time used to try and fix things, try and change things that the whole moment of celebrating each person for who they are is missed.

Something else that really hurt me was they said that another child who they believed to be the same as Zachariah had been healed and is now ‘normal’, and they believed that Zachariah too could be made ‘normal’.

What I would like to know is how can you say two children are the same and what the heck is normal?

Who earns the right to define what normal is when we are all meant to express our own unique selves?

I truly hold on to the fact that every child is made in God’s image, every child is made to be unique and special and every child has their own right to be treasured, celebrated and held up to flourish.

This made me think about how the world views disabilities and I’m not sure those with disabilities are treated with respect and/or taken seriously.

A pastor of another church once said that if they were change anything about their disabilities it would be prejudice against them and all the other people with disabilities.

Let’s stop this stigma, let’s create a world where we celebrate everybody, and although we can have hope for cures and healing we also have to have the balance of acceptance.

Look at the abilities rather than the disabilities and perceptions can be changed. Zachariah has the ability to make a whole room smile just by entering the room, he has the most amazing drumming skills and has a beautiful singing voice.

Zachariah has a cheeky side that makes you laugh, and a loving side that makes you feel warm inside.

He is the most beautiful boy I have laid eyes on and I celebrate him and thank God for him every single day.

I love my son!

Epilepsy doesn’t care that that you just need to sleep.

Epilepsy doesn’t care that it makes us all weep!

As we get closer to Purple day I thought I would share my experiences of the nasty neurological condition, Epilepsy.

It’s true when they say keep your friends close but your enemies closer, or as Sun Tzu said ‘Know your enemy and know yourself and you can fight a hundred battles without disaster’, as I frantically try to get to know everything I can about Epilepsy to try and keep myself one step ahead of the vicious condition.

When Zachariah was just a few days old he started with jerky limb movements, to be honest I didn’t really think anything of it, I just thought he was a jumpy baby.

It was the midwife who spotted it and raised a concern suggesting that I brought it up with a doctor. Following this we had MRI’s, EEG’S and he was monitored closely.

However, after numerous negative results, it wasn’t until he was 18 months old that he was officially diagnosed with Epilepsy and started on his medication. I was devastated!

Although I didn’t know much about it, I knew enough to be scared and worried for my baby boy.

After googling his diagnosis of Lissencephaly I had more insight and found that epilepsy is very common in children with Lissencephaly and is one of the main causes of these children having a shortened life…

Great! One more thing to try and attack my boy.

At this point I’ll be honest, I just got swept away with getting him on his meds, getting the epilepsy under control and not letting it interfere with Zachariah’s enjoyment in life.

I didn’t really look into the type of epilepsy he had or research alternative drugs, I just put my faith into the doctors and hoped that we were on the right path.

Fortunately the meds worked, but as some of you may know from a previous blog, it changed him, Zachariah became more grumpy and restless, but the bonus was there were less seizures!

We are now coming to the limit of his current meds and they need reviewing, I am so worried as I have just about got used to the routine of giving him Epilim twice a day, and now we may be facing new drugs, new dose and new side effects!

But reality is he’s outgrown them.  His seizures have become more aggressive, more frequent and causing more of a disturbance!

Just last week, we had friends over, to set the scene, we had trolls movie on, we were all singing along, having lots of fun and in that moment it was so special.

However this was quickly interrupted by an aggressive seizure which caused him to gag and splutter on his own sick!

Being in the kitchen I didn’t spot it straight away but my friend quickly called me in to attend to Zachariah.

It was probably the scariest, most upsetting seizure I have witnessed and it made me so so angry!

Zachariah was in a happy place, enjoying the company of friends, but epilepsy didn’t care at all, it just came racing in to take that moment away.

This is just one moment and just one seizure that I share with you, but in reality Zachariah faces lots more in his daily life, some we catch, some that go unseen, and they range from absences to partial complex seizures.

It is now that I am getting more involved as I am feeling like it is getting out of control and it isn’t as simple as starting him on meds.

Epilepsy is our enemy but we will not let it defeat us!

On 19th March I will be running a 10k, raising funds for the charity, Epilepsy Action and to fund Zachariah an Epilepsy Watch to give us peace of mind!

Epilepsy doesn’t care!

Being a stay at home mum has enabled me to look after my nieces and friends children from time to time.

I have loved every minute, being home with Zachariah and also getting lots of quality time with the other children I treasure.

However some days, I find myself not so welcoming.

There are days I just cannot face seeing other children, but instead I would lock Zachariah and I at home and spend the day hibernating.

I was confused with my own actions but knew that I couldn’t handle it.

One of my closest friends has a little girl who is just 2 days older than Zachariah, they have both been the bestest of friends since they were 3 months old.

Despite my awesome friendship with her parents and despite how much I love this little girl and enjoy her achievements, there were days I couldn’t face them.

I remember when she started walking, my two sided heart was overjoyed but also saddened, trying to imagine Zachariah also walking.

I recall one day her Mummy texting me, asking if I fancied a brew or for me to look after her daughter, and I quite blankly replied “No”.

The factors usually behind me not wanting to see other children are usually during long periods of illness or after big appointments, it was whenever I was feeling low I guess.

Just some days it can be too painful to make your child’s lunch whilst my son has his pumped into him.

It can be too upsetting to see your child play with my sons toys whilst he sleeps off a restless night.

It can be too hard to hear your child tell you they love you or explain to you what they would like whilst my son cries hysterically as I desperately try to find what is causing the discomfort.

Some days I just cannot see your child.

Most of the time however, I love seeing your child, I love how they greet Zachariah by coming up close, touch his hand and say hello.

I love how they bring toys to his tray, and I love how much they care for and love him.

Rather than comparing our children, I need to see how beautiful they’re friendship is and how much my son has taught your child.

Another time I struggled was seeing children significantly younger than Zachariah start reaching milestones.

Out of everything, it was the holding of a sippy cup that hit me the hardest.

I’m not sure if I was feeling extra delicate that day or if witnessing my friends little boy hold a cup was a real big deal for me, but it brought up so many emotions.

Milestones are something we’ve had to adjust, we no longer follow the typical milestones, but instead set small reachable goals within 6 weekly periods for Zachariah.

Since doing this, it has made it slightly better to handle, as I’ve put Zachariah on his own development path rather than sitting him on the graph with all the other children.

I think that is the key right there, I’ve written about comparing before and realised that the minute you put every child on their own development journey the minute you start comparing less and getting upset less too over what your child can and cannot do.

I have also realised that it is best to be honest.

By telling my friends why, it helps them understand me more, helps them see where I struggle, this then makes our friendship even more special and intimate.

I love and celebrate all children, but some days I just cannot see your child.

A miracle is something that happens against the odds, it’s something that cannot be understood, and it’s something we read about in the Bible, where there are lots of what appear to be, impossible events.

For me, miracles are a little bit closer to home.

Miracles happen against all the odds, but also happen when the odds are for them. Miracles happen against all the negativity, but also within positivity.

Miracles bring us joy, love, and something we couldn’t quite picture but once we see that miracle everything falls into place.

Miracles are to be treasured, appreciated and remembered for what or who they are.

When I picture a miracle I picture Zachariah, my nieces, my friends’ children and all the children around the world.

Children who are all so unique, perfect and wonderfully made.

Last year, a very close friend of mine said goodbye to her little miracle, a miracle who fought so hard, fought so brave.

A miracle who spent a very short time with her mummy, daddy and brother giving such precious gifts of love, joy, hope and peace.

Now, although their miracle may not have appeared to be what we all expected and hoped for, their miracle was still a miracle, and still the most perfect gift from God.

As I was grieving and asking God why, I found myself wondering why Zachariah had lived longer than Doctors had said, I found myself wondering why my friend’s baby girl could not have been given longer.

As I comforted my friend I felt guilt, guilt that brought so much pain and confusion, as I couldn’t explain why we had to say goodbye to such a perfect miracle so soon.

During the pregnancy we had spoken about the services that will help my friend’s family, we had discussed how I could help find the best equipment for this precious baby girl, we had this huge hope that she would live long enough for all our plans to fall into place.

Despite all this, there was a bigger plan that we could not comprehend, this miracle was taking a path that we had no control over, and what an amazing miracle she was.

Miracles have a way of taking us by surprise, they are not always what we expect them to be, but I truly believe that every child created is a miracle and they should all be appreciated in such way.

Beautiful. Perfect. Wonderfully made.

To all of you who ask why, just like I did, look at your children as unique miracles who are so magnificent in every way.

However long you are given with your miracles, treasure it and remember them for what they brought to your lives.

Although I didn’t meet my friend’s baby girl, I have been blessed by her life and left amazed by her strength and beauty.

Enjoy your time with your miracles and learn from them, as I believe every miracle has a gift to be received.

In memory of Matilda Rose x

It was just a regular Sunday afternoon, we were returning home from Church.

Like always we parked up round the back of the house and proceeded to walk up the steps into the yard.

Only this time Tim fell up the steps carrying Zachariah, leaving Zachariah to fly out of his arms and hit his head on the stone floor!

The noise this made will stay with me.

I dropped everything I was holding and ran so fast to scoop him up into my arms.

In an absolute state of panic I just cradled him and kissed him telling him everything was OK, yet I forgot to check Tim was OK.

I rushed inside to take a seat and check Zachariah over who was hysterically crying!

Tim followed us in.

With no visible markings, we decided it was still best to get him checked over.

Given the all clear from the doctors we looked on the incident as a miracle, I mean how could he crack his little head on the concrete floor and come away with no damage?

Our little boy was so blessed to have no bruise, bump, scratch or graze.

His Daddy wasn’t too bad either, coming away with just a few marks.

Needless to say, I am utterly traumatised from the whole thing.

I keep experiencing it over and over again in my head and get very anxious when it comes to us carrying Zachariah to and from the car.

Seeing my boy look so helpless has made me see his disabilities more clearly.

By this I mean, I have learnt to look past Zachariah’s disabilities and just see him for who he is, however seeing him fall like that and have no reflex or anything broke my heart.

It highlighted just how much he relies on his mummy and daddy to do everything for him.

At that moment of time, Tim couldn’t have done anymore for him than he did, he had tripped up the step, grabbed onto a rail which broke and he fell, it was just one of those really unfortunate things.

An unfortunate thing that has screamed so loudly how much we need a more accessible home.

After chasing up the housing situation, and getting no further with it, we are all left feeling a little frustrated and out of our depths with it all.

Until recently, we have been more than grateful with the house we have, but the reality is as Zachariah grows, his needs grow also, this demands the need of a more accessible house and appropriate equipment.

I’m trusting that a house comes up soon and this horrible event can be a forgotten memory.

Once Zachariah had come round and felt less groggy, he started to show his little cheeky side again.

He started drumming and singing, and just being so darn cute!

I felt another sigh of relief, he was happy and he was delighted to have his Mummy and Daddy by his side, which helped our guilt as Zachariah wasn’t holding any grudges against us for what he had just been through.

Sounds silly, I know, but it’s always good to still be the good cop!

The nurses kept close eye on the little sausage and agreed to start him on slow pump feed to give his tummy time to adapt and then start the bolus feeds the following day.

The training went really well and although I was a little scatty to begin with I soon picked it up.

What was I worried about?

This was so simple and Zachariah was not bothered by it all.

We can quickly get ourselves in such a state over the things just because they are not familiar with them, or because we feel worried and out of control.

Now that we are on the other side I can visualise it all, and you know what, it’s really not that scary after all.

I no longer feel upset that he won’t be eating my meals, but reassured that he’s getting all his nutrients without the hazards of choking and aspiration.

Bringing him home was such a proud moment.

The way he has just accepted it all and got on with things has just been so amazing and taught me a good few lessons about what is important.

It’s incredible how even post-op Zachariah is teaching me new things.

Children are so resilient aren’t they, they don’t have the fears that we seem to get caught up in, their innocence can be quite refreshing and calming in some ways.

Taking his lead with it all has definitely been the best way, he’s been the one who has called the shots, therefore we have found it much easier to handle as we’ve seen him cope with it all so well.

Before the op I was telling everyone that we’re not sure we’ll make set plans as we don’t know how Zachariah will be.

In hindsight I think I was worrying about how I would be and whether or not I would be comfortable doing his feeds outside the comfort of my home.

Needless to say, there was no questions about it once we were home, it came so naturally to us that we have been out more than usual.

With Tim having time off work we were able to get out and about, Zachariah even attended his first Christmas party of the year!

I guess what I am trying to say is the grass can be greener on the other side.

Our new normal is a wonderful normal, it has made me even more accepting of things I am unfamiliar with.

I now have this new knowledge and new skill to add to my ‘Mummy’ CV.

It’s given Zachariah a better way of life, made him healthier and will hopefully allow him to become more awake and alert throughout the day.

Change is an opportunity, it’s new, it’s exciting, try not to look at change in a negative way but celebrate it and embrace it.

Really hope this helps people who are worrying about the unknown and change.

Sitting face to face with the surgeon who was about to perform surgery on my son and sign a piece paper acknowledging what can go wrong just felt so unreal.

It was the 25th November, 2016, the day that we would take Zachariah to have his Gastrostomy.

After finding myself really struggling emotionally leading up to the date, I was actually pretty calm and collected on the day.

We arrived early and got all settled with colouring books for Tim and I and tinsel for the boyo.

We had nurses, doctors and surgeons all come over one by one to do their bit, it all started to feel more real.

A little bit of me was hoping they would say he’s not well enough to have it, so I could grab him and run away!

But deep down I still had the peace about it all, and knew it was the most beneficial way for Zachariah.

It wasn’t long until we had to put him in his gown and say goodbye to our sweet, sweet son.

It was here that my emotions started to lose control, I could feel myself getting hot and could feel the tears about to burst.

I gave him a huge sloppy kiss and watched him go off with his Daddy into the distance.

I broke down into tears.

But then I had one of those moments, you know the slideshow kind of moment where lots of images popped up in your mind, it was filled with memories of Zachariah smiling, laughing and having a good time.

It gave me comfort and in that moment I felt a peace over me.

Zachariah is going to be OK, whenever I worry or fret, Zachariah always shows me that he is OK by making me smile.

I prayed for protection one more time and prayed for the surgeons then made the decision to switch off from it all.

Whilst waiting for Tim to return a nurse took me to the ward where I set up camp, and got his comforter and blanket ready, then as soon as he arrived back we went on the hunt for some lunch.

Surprisingly, time didn’t drag too much and before we knew it he was in recovery waiting for us to go collect him.

My feelings were odd as I looked down on him all hot and cranky, he had lots of wires around him and he was attached to a drip.

He looked so fragile and vulnerable, I felt relieved that the surgery went well, yet guilty too that he was in so much distress over something he never actually agreed to.

It made me think about the fact that Tim and I are always going to have to make decisions for him, he won’t be able to have his say verbally.

I mean, he can let us know in his own way what he needs etc, however it will be us that make those really hard, serious decisions.

I just had to have hope and trust that we had made the right decision at this time.

I hope this account of Zachariah’s surgery day can help some of you understand your feelings from similar experiences, and help those who are due to take their child for surgery too.

Well, one of mine is the fact that Zachariah is a monkey with his meals and makes a huge mess as he spits and dribbles it out, smears it across his face and hair and rubs it across his chest.

This started off as very cute, seeing his little cheeks full of tomato based food, somehow made us all look at him and say, “Arrwhh!”

It was new, exciting and a little bit fun.

He was, “exploring”, I would say!

He’s learning how to eat and I’m also learning how to feed the spoon into his mouth rather than his eyes, nose and neck.

So I guess I’m saying it was totally acceptable, at 6 months old to have more food covering him than in his tummy.

However two years down the line, should it still be quite as funny, and cute?

When he has poor tongue control due to tiredness or something I don’t think twice, the food comes straight back out and I re spoon it back in.

However when he is splattering a spoonful of Italian Tuna Mash in my face and then laughing, it’s a whole new level.

Where I would usually laugh it off, and put it down to learning and development, recently I have been getting a little bit frustrated.

And here’s why.

Zachariah doesn’t really get enough fluid some days due to aspirations and coughing.

He can struggle with meals because he’s too tired or just doesn’t have the energy to eat.

Therefore when he’s awake and alert it’s a great opportunity to get something in him.(however Zachariah has other ideas).

Zachariah cannot just be filled up on snacks in between, he is limited to what he can have, and even then it has to be smooth, thick liquid form.

At the moment, if he refuses the spoon there is no other way to feed him.

Now he’s not losing too much weight yet, but my worry is that if he continues the way he is, his weight may well become an issue.

With all this over my head I struggle to see the funny side anymore, I would love to enjoy the messy feeding because that’s just the type of person I am, but not at the cost of my son’s health.

My other angle to this is that how long do I ignore Zachariah’s cheeky behavior?

I only have Zachariah therefore not really sure of the age that you stop them being silly at the dinner table?

We all find it funny when Zachariah does it because, for him, it’s development.

However for a child of the same age without disabilities when is it time to stop messing with their food?

I just wonder if I’m too soft with my boy and make excuses for him, is he capable of understanding the word no?

He will soon be tube fed, so a huge part of me just really wants to enjoy this time, watching Zachariah enjoy messy play with his food, as I don’t want to look back and regret being so hard on him.