For many of us we vision them going from babbling to talking, and from crawling to walking.

The men in the family joke about them being the next Wayne Rooney and the ladies dream about them being the next star in The Nutcracker (these are just examples by the way and weren’t ours).

So when that image doesn’t quite pan out, when it doesn’t come so easily for your child to babble or crawl, when your child has to fight so hard to survive what are our goals meant to become?

How far should we push that child to try and succeed in something that many other children do so naturally?

I’m not saying it’s at all easy for all children to crawl and walk, I’ve witnessed many of children take their time doing these things, but they do achieve it in good time.

How much therapy are we to push our child through until we just accept that it’s not going to happen?

Or should we never accept anything?

I’ve recently found myself wondering what I am doing with Zachariah, I’ve become a little confused as to where I want us to go, how far I want to push him and how much I want him to just Be!

Before his Gastrostomy, Zachariah had been quite poorly, therefore having a bath was a struggle let alone therapy and stimulation.

It got me so worried seeing him not eat, get raised temperatures and be totally fed up.

As I was sat there cuddling him and worrying about the way I was holding him and becoming concerned that he hadn’t been in his standing frame for a few days that I realised that I spend so much time consuming these kinds of thoughts.

It was here I realised that does any of that truly matter?

Isn’t it my duty right now to cradle my boy and get him well, isn’t my duty to be chasing up with Doctors and pestering them to get his op date forwarded until they cave.

Why am I here in the midst of a really tough time worrying over his exercises.

Therapy is important of course it is, it’s been very beneficial to Zachariah in many ways, but surely there’s a time and a place and right now it isn’t happening, so why beat myself up over it.

Recently we caught up with a friend, who asked me if I had considered glasses for Zachariah.

I was a little confused by this question and replied saying he’s registered blind and it’s to do with the signals in the brain, how can glasses help that? (she knew this by the way).

She then went on to remind me that eyesight can keep on developing until the age of 7, through brain therapy and stimulation and possibly some glasses, Zachariah’s eyesight could improve.

It was here I sunk and started to feel like a crappy mother, we’ve all been there right?

We get so lost in it all that sometimes we step out of the battle, we lose that determination. I had reached a point of acceptance that Zachariah was blind and that was it.

I didn’t realise I had done it.

We need to find a balance between acceptance, hope and perseverance.

We need to look at what is truly important at that moment in time and not get tied down with masses of guilt, emotion and frustration, yet still have hope that tomorrow is a new day.

Sounds simple right?

But if you are like me, you like to complicate matters by worrying over things that you cannot control.

I’m sorry that there are no answers in my blog as to how we juggle all this, but I hope it helps you to have more peace about your decisions and attitude to your child’s happiness and development.

I hope that you can see that you are doing great!

I guess what I am saying is never accept anything in concrete, have perseverance to change for the better and have hope for new things.

Zachariah never gives up, so neither will I, my policy is to follow his lead! 🙂

Hope I’ve made sense, some things can be difficult to express.

Much love,

Mummy to Zachariah

When I dreamt about this day there were fireworks and celebration, there were tears of relief and a feeling that there was some kind of end to all the madness.

However reality didn’t quite match up to this.

It was all just a bit, ‘Oh okay, that’s it then’.

Tim had taken the day off – whenever we feel it is going to be big news, he takes a day off so he can be there to hear first-hand.

With only having limited holidays, he has to prioritise.

We treated ourselves to a nice breakfast and set off for the 40 minute journey to the hospital an hour and a half before the appointment was to be held (as I’m an early bird) and got ourselves there nice and early.

The clinic was really busy, I think they’ve had a huge revelation in the genetic world and so we were amongst many other families who were too getting their much desired answers.

We weren’t waiting long when we heard Zachariah’s name called out, we walked down to the room with anticipation in our eyes and both sat down to then take a deep breath.

The Dr was lovely, before she started she checked we were ok, asked how our journey was and gave Zachariah the attention he so loves to receive.

She then began to ask about Zachariah and what he enjoys to do.

She asked about his hobbies and whether or not he was in nursery. She was just so wonderful!

We are so used to going into these clinic rooms and being treated as a statistic or a number, but this lady was showing interest in our boy for who he really is.

I thank her for this!

And then she said it, she went into a different language and told us that Zachariah has a change in the TUBB2B GENE.

And there it was the condition.

But there was no celebration as such, there was just silence then a smile of relief.

For some reason it didn’t really matter so much anymore, with all the worries we were encountering with Zachariah’s health and feeding difficulties, the only thing that mattered was that he was well.

I had told many friends that I would consider adding to our family when we had the answers, however nothing seemed any clearer.

After searching for this answer since before he was born, it’s a little bit like a bursting balloon as it doesn’t seem to have affected our family too much.

I mean it’s great that we have the diagnosis, and I feel very blessed to have such an incredible hospital with an incredible team of Doctors who have worked so hard to find out why Zachariah’s brain didn’t develop.

And I am over the moon that it’s not genetic.

It was, as they described it, “a one-off, a fluke, random”. (I’m not entirely sure how I feel about these ways of describing my son, I could think of better ways, such as unique and exclusive, this somehow makes him sound more like a superstar).

It’s funny how we get so caught up on the language people use when speaking about our children.

We are so blessed to have these answers, and I will never take it for granted as I know it is not as simple for other families.

My message to those families, is don’t get caught up in finding answers, enjoy your children and put your energy into making every moment count.

Much love! xx

He’s had temperatures, seizures, drowsiness and has been unable to do any therapy for the best part of three weeks.

It’s been tough, and the boyo is totally fed up with it all.

After numerous trips to the GP, we were sent to Hospital, straight onto ward to have him checked over there, who in the end sent us away with Suppositories to help manage the temps and sooth his throat.

To make things easier for me I have put together a little Hospital Passport for Zachariah, inside there is all the information the Doctors need to know about his condition, his medications and his needs, likes and dislikes.

The purpose of this document is to relieve stress from me in an upsetting situation and for them to have accurate information (I don’t know about you, but I sometimes forget what Zachariah’s conditions are and I always end up pronouncing them wrong anyway).

His passport is there to make life easier for all.

It frees me up to discuss why we are there at this particular moment. So I handed it straight to the Doctor who walked to her station and began to read.

It wasn’t long until she needed her google app to help her as Zachariah’s conditions are quite rare.

She then came back over and started asking about Zachariah and to my annoyance she asked questions that were quite clearly covered in the booklet like, ‘Can he talk?’ and, ‘What can he do?’

I mean, what was the point in me spending all that time and effort creating a tool to help things go smoothly when at hospital if you don’t read it properly but instead bombard me with questions I struggle to answer?!

So, after going through all the basics, we eventually got to the point of why Zachariah was there and the wait for the Registration began.

A dear friend had driven us up that day so whilst Zachariah slept we enjoyed a little picnic and natter to brighten the mood. The nurses’ station was literally opposite and we could pretty much hear all the on goings as they nicely shouted to one another in conversation.

The next part of the story is what made me write this blog today, it’s surreal and it actually made me and my friend have a little bit of a giggle.

A group of young, smart looking student Doctors came racing in and hovered around a lady at a computer screen.

The lady then began to discuss a patient and told them the patient had an underdeveloped brain, she then started asking questions such as ‘Do you know what Agenesis of the Corpus Callosum means?’ To which one of the students eagerly raised his hand and told her quite confidently it was that the bridge connecting the two sides of the brain was missing.

It was here I was sure they were discussing my son.

I mean I am all for learning, researching etc., but to do it so close to where we are sitting and to do when we are there at such unfortunate circumstances felt a little insensitive.

I explained to my friend that I would have been more comfortable if they came over and spoke to me and my sons condition, I understand that it is vital for Doctors to get as much experience and knowledge as they can, therefore I am happy to help.

It just felt so bizarre to have them so close having a lesson, as they weren’t the professionals that were seeing to him nor did they need the knowledge to help him get better.

I’ve written this just to speak about my experience at hospital, it’s a diary account, it is not at all a rant to the hospital or the NHS, but simply an insight into the eventful life as Zachariah’s Mummy.

Much love xx

Now that I’m a mummy, I want to start our own traditions.

I want the magic of Christmas in our own home and want to do lots of fun activities leading up to the big day.

This week we visited a garden centre, they had done it all up with beautiful displays, and delicately decorated trees, it was just so lovely.

Zachariah loved it, all the lights and tinsel was just the cheer up he needed that day.

But then I found myself getting tears in my eyes as I looked at all the props they had to create the magic I had encountered as a child.

There were stencils to spray Santa’s boot on the carpet, lots of different wish list packs for children to write to Santa with, reindeer droppings and so much more. I found myself getting upset as Zachariah would not be aware of all these things, I felt myself grieving once again over something my son would be missing out on.

It got me thinking about what I could do to give Christmas that sparkle and fantasy for Zachariah to enjoy.

Now it’s really important to me to remember the true essence of Christmas, celebrating Jesus, new life, joy and hope, but it’s also important to me to have family traditions and excitement.

I then started thinking about what Christmas meant to Zachariah, looking through his eyes made me see that Christmas was bright, it was full of flashing colours, it was about singing carols, and it was a time to play with fake snow, bells and exciting tinsel.

By looking through his eyes I could see that Christmas was already magical and I did not need all the props and letters to Santa as he had everything he needed.

All of a sudden I wasn’t feeling so upset anymore but wanting to be more appreciative of what we have.

Zachariah loves Christmas, last year he was so content just enjoying all the lights, glitter and noise.

Why do I get so caught up on the things he will not encounter but instead just focus on the fact that he is so easily pleased just to be part of the fun?

He is happy, he’s fortunate to live in a safe place, he is blessed to have lots of family and friends surrounding him who fuss over him.

He is unaware of the things I am so concerned he is missing out on.

Those emotions in the garden centre will most probably not disappear, but I can make a choice to look above them by cherishing everything Zachariah does have this Christmas which is love, and lots of it.

Focus on what matters this Christmas.

I admired Sally for stepping out and filming this documentary as the things she had to listen to would have been so heart-breaking to hear.

Now, my son doesn’t have Down Syndrome so I cannot speak as though I have much insight, but I have had the honour of meeting a few people who do have Down Syndrome.

And my son has disabilities, and we were also told to terminate our beloved son.

Let me tell you a little bit of our story.

It was the day of my growth scan and I would have been around 30 weeks’ gestation, my parents took me as Tim had no holiday’s left to take.

We weren’t waiting too long before we had our turn, I was so excited to be seeing my boy again, and for my parents to meet him too. The sonographer squirted the jelly on my belly and began to scan.

All of a sudden, she went quiet.

My Dad started questioning her as to what she was looking at, then she dashed out of the room to find another member of staff.

It’s all a bit of a blur but I remember feeling very anxious by this point – I wanted to know what was wrong.

We were told to wait in the waiting area to be seen by a consultant who told us the fluid in his Ventricles were too large.

Fast forwarding on a little bit, we came back to the hospital with Tim a few days later to be seen by a specialist midwife who talked us through what they had found, the word termination popped up a few times, and the possibility of Zachariah having a chromosome defect was also mentioned.

We were given a few options, but in hindsight I don’t feel like we had much positive information, it was all negative and all led to them pushing a termination.

We were told he may not live a long life.

I had the Amniocentesis test which came back negative.

It was here I was really worried, I’ll be completely honest here and say that I found such comfort in the possibility of my son having Down Syndrome, that way I would know for sure what was happening, and that way I knew there was so much support and I would have the confidence that we could get through this!

This wasn’t the case, therefore, we went on for further scans and an MRI which gave us so much more information, but also invited the Doctors to mention the T-word once again.

It scares me so much the way that professionals handle these situations, the word termination isn’t a rare word, but yet a word that is shouted out left, right and centre.

It’s devastating how little chance some of these babies have because parents aren’t given a more positive approach, but instead are made to believe that they cannot give their baby the best life.

If parents were given all the information instead of the negatives and the statistics I believe we would have a more beautiful world with babies who were given a chance.

A, “choice”, should be made with all the facts.

Children with Down Syndrome are Children, they are beautiful, they have personalities and they go on to live adventurous lives just like everyone else.

They deserve to be viewed this way.

And this goes for the rest of our absolutely gorgeous and unique children.

The Doctors knew so little about my son when they spoke negatively about him, but his Mummy and Daddy knew that he would fight for his life.

God knew him and He would determine his future.

I know so many miracle babies who have proven that they deserve a life, no matter how short or long that may be, who have been true blessings to many.

I haven’t written this to upset anyone, it’s just my view.

I just believe that professionals need to be more positive, more fair and more delicate and supportive.

Every Life is worth fighting for.

Today I’m sat here writing this blog with a hot cup of coffee whilst Zachariah is at nursery for his third settling in session and to be honest I’m feeling rather excited about the whole thing.

I have some precious time to just be me and reflect.

All those things I thought I would experience when leaving him at nursery are pretty much non-existent.

Instead of feeling guilty about leaving him I am feeling excited to hear about his day and see what fun he has participated in.

Instead of feeling worried I am feeling complete peace over it all, I have nothing but warm, positive vibes when I drop him off at nursery, it is such a wonderful place with lots of passionate staff.

Instead of wondering what I will do with my time and watching the clock to pick him up I am embracing the time out and enjoying things I love to do, yes I know I’m sat here writing about Zachariah, but we can’t forget about him completely hey!

Overall I have felt very proud of my son, and his achievements.

He has had no trouble at all settling in and appears to be loving the atmosphere.

Already he is making new friends and sharing his beautiful, contagious smile with everyone around him.

I have felt proud dropping off and picking him up, it feels so good to be part of such a usual, everyday routine.

By this I mean that hospital visits, therapy sessions and testing have been our norm for the past two years, but now we are involved in something that the rest of the world is involved in and it feels so good!

Sending Zachariah to nursery has definitely been one of the best decisions Tim and I have made, it’s a decision that has proved to be positive and beneficial for us all, especially Zachariah.

I now look forward to watching Zachariah blossom, learn new skills and bring home lots of pictures that I can stick up on the fridge!

I look forward to photo day, joining in dressing up days and parent evenings.

And I look forward to witnessing what Zachariah teaches the other children and staff at the nursery, and seeing how he too can be an educator.

The small things and the big things will all be celebrated!

I’ve always struggled with spelling and grammar, plus I’ve always found it hard to get down on paper what I really want to say.

Because of this I have avoided blogging for a long time, I have ignored the nudges to start putting my feelings onto paper and doubted that I have something worth saying.

Who wants to hear about my life?

How can I make my life sound interesting?

How do I put on paper what I really mean?

How honest should I be?

These are all the barriers I was fighting against.

And then I starting reading the firefly blogs. I enjoyed hearing about other families like mine, and soon understood that everyone has something to say, and everyone has something that can move somebody else.

I was touched by the other families’ journeys so I was sure I could touch others too.

I wanted to bring honesty, and yet positivity.

I wanted to show Zachariah in his true light, and show the world that he may have an underdeveloped brain but he has a joyful life!

And I wanted to prove that in every struggle, each bad day and dark cloud there is a blessing to be thankful for.

Once it was all approved, I started writing! From the very start I felt this huge sigh of relief, I felt barriers knocking down and had a huge peace about it all. I was now an open book and people were about to jump on the ride and follow my journey as Zachariah’s Mummy.

Blogging has changed my life for a number of reasons.

The first being that it has given me such pleasure to hear that I have helped someone because of what I have written.

I have had messages to thank me for being honest and open as they really needed to hear what I had said. Being honest about the way I’m feeling and hearing that someone else has had similar feelings makes you feel less alien and less lonely.

I have had people contact me for a further discussions on particular topics, and let’s not forget the fact that I have made some new friends along the way! This alone is just marvellous!

I have had the pleasure of meeting a mummy and her son which has been such a blessing. Introducing our sons was beautiful as they both connected so quickly and us Mummies found such warmth from our new found friendship.

Secondly it has been therapeutic.

Seeing my feelings and thoughts on the laptop screen have helped in the process of understanding myself, and helping me through hard times along the way.

It’s given me perspective and time to focus on what is important in life.

Lastly, blogging has helped me show my son to the world and led us into a new world full of amazing families just like us! I thank Zachariah for this new adventure!

The Hospice was absolutely stunning, I was overwhelmed at the beauty of it and the staff that are so dedicated to making it such a magical place.

The visit however, came with lots of emotions and thoughts.

My emotions were a mixture of excitement, joy and sadness.

And let’s not forget confusion, as I was confused about the way I was feeling and I why I had such negative emotions in such an incredible place.

The excitement came in because Zachariah was able to access things he could not access elsewhere, he was able to have hydrotherapy sessions with a physio which is so beneficial to him as he has low muscle tone.

I was excited for Zachariah and the prospects he was facing!

The joy came in because an amazing place had accepted Zachariah into their family and greeted him such huge open arms, they looked at my son for his achievements and his capabilities rather than his condition.

The staff seemed fearless but yet soft and warm, they had such love for the children who accessed the hospice.

I felt joy because there was this absolutely incredible place that was catered completely for my son with hoists, roomy corridors, wide doors, adjustable beds, soft and safe play areas, a fully accessible park and lots more.

It was literally the most perfect place for him!

I felt joy because our family was so blessed to have free access to the magical place because they have hard working staff who fight for funding, and because they have lots of dedicated investors who believe it is a worthy place for their money.

And then came the sadness as I looked at the Hospice as a place where my son may not only spend poorly days, but also somewhere he may spend his final days.

Too honest? Too hard to hear?

I’m afraid to say it but this is how my brain has been digesting it all.

I have to prepare myself when visiting as I do not want to feel this devastation, I do not want to be thinking of such times, I want to be enjoying every moment in the present, not grieving over the future.

I want to be 100% positive when I enter this place, I want it to be magical like I had described earlier.

So I’ll end my blog on a high and celebrate this lovely place, these amazing staff and what they bless my family with.

I’ll celebrate my son, and what he has achieved so far and look forward to the future, a future where there are no limits, but an opportunity in every moment!

We wonder how much information is too much for children, we ask ourselves, ‘Will they be able to take in what we are saying’ etc.

But the fact is, children want the truth and if they don’t quite understand they will either take what they do understand and move on or ask more questions.

This is all fine. Take their lead with it.

It got me thinking about an answer we could all use to try and explain why children are all so different and here is what I came up with…

Just like butterflies fly at different paces and in different directions, children learn at different paces and reach different goals.

This doesn’t make any child better, more clever or more intelligent than any other child.

It makes them all special and all different with their own uniquely designed wings!

We should never compare children against one another but measure their own progress and see how they’ve achieved their own personal goals.

Would you race a cheetah with a snail? No we wouldn’t so we shouldn’t compare children with other children.

I know that this answer wouldn’t be appropriate for all children but it’s a base.

We never know when children are going to put you on the spot and start asking questions, so I believe it is best to have done some thinking about it.

Likewise I believe it important to teach children that intelligence is not everything, and it certainly doesn’t define us as a person.

We all have characteristics that make us stand out and we have our own methods of learning and our own obstacles to overcome.

A child with a visual impairment may not learn to talk as quickly as a child without, as more often than not we learn to speak by watching the lips of others and copying the movement.

For a child with a visual impairment this will not come easy. 

They need more time as they learn by listening and feeling your lips movements instead.

I wrote this blog to make us all think about what we are telling the children around our little ones and encouraging you to be honest with them as they are more alert than we give them credit for at times.

I love my Son and everything he teaches the children around him.

Rochelle, Mummy to Zachariah xx