Although it came with peace and quiet where Zachariah would otherwise be distressed it also came with a relay match in the middle of the night.

Whenever it would fall out, I would have to dash out of bed and run to quickly plug the dummy back in. We all get the drift.

I would often discuss this routine with friends and we would compare notes on how to make it easier, a big tip being the glow in the dark dummies to help you find it.

Another being to send the dummy off to the dummy fairy.

This would come with a whole new level of guilt if I took away Zachariah’s comforter!

Then another being just wait until they can hold their own dummy and put it back in themselves, this sounds great, however my son has global developmental delay and a visual impairment, he does not have this option.

So two years on we still have a dummy for comfort and we still have the continuous game of dummy running throughout the night.

Some nights scoring up to 30 dummy runs! Gold Olympic medal please?

The other night I heard him shout for the tenth time, I rolled over and stumbled out of bed and shouted “why can’t he put his own dummy back in”? “Why are we still up so much throughout the night for a dummy”!?

Straight away I had this rush of guilt!

My son who relies on me for everything needed me to go and put his dummy back in, it wasn’t his fault, I should not be pointing my anger and frustration towards him, he is a little boy who has fought so much to get to where he is today.

I felt like such a horrid Mother as I got myself so worked up, the pure exhaustion from the unsettled nights had really took its toll and I had no more room left to be okay with it.

In the space of 2 minutes I had gone from being asleep, to being woken up, to shouting, to feeling utter shame and guilt for feeling frustrated with my son.

It happens too often doesn’t it?

We crack on with our lives, we get run down from all the responsibilities we have being a parent to a child with complex needs and then we have a complete blow out to then be left feeling guilty.

We wonder where we can send our frustrations to, wouldn’t it be great to have a little bin we blow all our frustrations into, seal it up and chuck it away without it affecting our children and without it being sealed with the guilt.

I never want my son to feel like he is a burden, nor to feel responsible for my tiredness and grumpiness as the only thing he is responsible for is bringing utter joy and love into my world.

The day we decided to try for a baby was the day we were ready to give up everything for them, tonight I remember that, remember that we knew it would be tough but it would all be worth it!

I love my boy on tired days and on non tired days all the same!

Rochelle, Mummy to Zachariah xx

None of us really know what this means until we meet our babies for the first time.

We heard what they were saying and we probably believed them but we did not know the extent of how this would be relevant in our experience.

This was more than true in my experience, as Zachariah has also shown me the person I really am.

I have always been a relatively patient person, with my desire to become a teacher it fitted in quite well.

However on the scale, my patience was not as highly scored as I first thought.

When I first started to try and play with Zachariah my patience was well and truly tested, because he is severely visually impaired he would either not see the toy I was presenting or he would take a very long time to see it.

I got frustrated, I began to believe I could not play with my son and because of that I must be a failure.

However over time I began to understand my son more and I was able to present toys in the way he needed and I learnt how to create the correct atmosphere for him to see, and bring to him bold, contrasting colours.

My patience from here had started to develop, it had reached a new level. I thank my boy for that!

I have always struggled to hold my emotions in. When at University studying in the hope to become a teacher, I was told several times that I should consider teaching children with special educational needs and disabilities.

I remember telling those who suggested it that I would become too emotionally involved, I was not cut out for it and that I am not strong enough to be that person.

How wrong could I have been?! As 3 years later God blessed me with a little boy who has severe disabilities.

Now am I going to say that I am not strong enough or good enough to be his mother? Of course not! God gave me Zachariah, who has shown me who I really am.

So to those people who said to me that having a child would change me, I would like to reply by saying my son hasn’t changed me as such, but he has brought out the better in me, he has shown me how to be patient, how to be strong and how to not be afraid nor doubt myself.

He has shown me how to laugh louder, smile brighter and appreciate the little things.

Thank you Zachariah for showing me who I am.

God has blessed me with an incredible husband and an amazing little boy who has brought utter joy to my life.

I have so many things to be thankful for, sometimes they are difficult to see through the tears and frustration, but every one of us has something to smile about.

Don’t get me wrong I have hard days, but that’s okay!

Not everything is simple and not everything plans out the way we imagined.

How can something you cannot see be your comfort?

Well, let me just pitch this idea to you, Zachariah cannot see very well, however he finds happiness in the TV, where some children would find entertainment in watching it, Zachariah enjoys listening to it.

I may not be able to see God as such but I can hear him giving me guidance and reassurance every day.

How can something you cannot see give you positivity?

God gives me hope. When Doctors told my husband and I that Zachariah may not survive, God gave me hope that I would meet my son.

When Doctors told me they did not know what quality of life Zachariah would have, God gave me hope that he would live an abundant life full of love.

When Doctors told me my son was severely visually impaired and they were not sure what he could see, God gave me hope that Zachariah would see beauty.

Zachariah sees beauty through lights and bold objects, he sees beauty by being surrounded by people who love and care for him.

God is love!

Some days I can feel very useless when it comes to caring for Zachariah and giving him what he needs.

He can become very restless and it can be very distressing and heart breaking trying to settle him.

I have sometimes wondered what it would be like for Zachariah to say “I love you mummy”, as I have doubted that he has the ability to love me.

When I hit this dark place God assures me of his love and there’s no greater love than that!

God loves my son, my husband and me. God connects us and brings us all together.

So I can sit here and ponder if Zachariah will ever know what love is and how to love, or I can fill our home with the love I’ve learnt from God and just enjoy each day I’m blessed to have with my boy. 

It is here I find peace, and try to live each day through a positive lens and count my blessings.

I trusted her when she told me he wasn’t in any pain but that he was just not wanting to do it.

She gave us exercises to do at home and decided to see him once a month to keep a check on his progress. She equipped me and gave me the confidence to go away and do the exercises without her there.

Each month we went and each month he was given more challenging tasks, but soon I started to see the benefits – he was progressing so much, the hour every day we did at home was worth it! 

Development was slow but it was there!

I’ve recently learnt an important lesson; Timothy Keller, a well-respected American Pastor and Theologian says that we can’t see someone growing but we can measure that they have grown.

This lesson has been a huge one for me as not that long ago I was getting frustrated that Zachariah wasn’t showing much progression with his therapy.

He was losing interest and struggling with the exercises, more so with his standing frame.

It frustrated me because I blamed myself, if Zachariah couldn’t do something surely it’s because I’m not teaching him properly or pushing him enough?

This is where I was wrong and this is where I needed to change my negative attitude into positive energy.

This is where it was my perspective that was hindering Zachariah’s chances of development.

There’s that saying – if you believe you can, you can; if you believe you can’t, you can’t!

As parents, grandparents, guardians etc. we need to live this motto for our children, if we believe they can walk, talk, sit then we will put everything into making it happen.

My biggest flaw when it comes to doing therapy with Zachariah is making excuses for him, he’s tired, he’s hungry, he’s just eaten he’s had a busy day, he might have a seizure…

The list goes on.

I believe you can all relate to this. However if we continue to make these excuses our children will start to lose their chances in reaching those goals we all have made for them.

Now don’t get me wrong, these excuses are real life barriers that we face daily, but let’s be mindful that we can still find opportunities in the daily to fit in a ten minute exercise, or a five minute unaided sitting session.

I’ve always tried to integrate therapy into play or changing of clothes or nappy in the morning and evening.

Here are a few ideas I’d like to share:

Play their favourite music, sing along, and massage their bodies to get them relaxed.

We like the CBeebies album and nursery rhymes, songs with actions are great as it’s an opportunity to get their bodies moving.

Set the mood.

For us this means going into Zachariah’s sensory room, we make it red and place him near his bubble tube. I understand we don’t all have sensory rooms but make a corner, be creative and have some fun :).

Stimulate them with their favourite toys.

Because Zachariah is visually impaired we need to work extra hard on this one, and this is where his sensory room really comes into play as we distract him with lights and flashing toys. Therapy through play is the best kind as they don’t realise they’re doing it.

Most importantly have fun and believe in yourself and your child!

Now although this is working for my family I understand that all our children are different and face different challenges daily in their lives.

That said, I really feel that this can help if you apply it to your own personal journey. You’re all doing great!

I love Zachariah’s Physiotherapist and everything she teaches me xxx

Little do people know that when they ask this question I go home and cry because if only it was that simple to have another child, I want nothing more than to be pregnant again and give Zachariah a brother or sister.

I have absolute desire to make my family bigger as I believe that my calling in life is to be a Mother.

Being brought up in a large family I vision myself also having a large family of my own.

We are still only at the very beginning of our genetics journey, Zachariah is very much a mystery to them and have advised we do not have any more children until they have a clearer view on his condition.

Not knowing the facts behind why Zachariah has so many complex needs and why his brain did not develop the way it should, makes it unknown of how it would affect any other children.

Whilst we adore our son and would not change him for the world, it has been extremely emotional and difficult at times.

Our boy has had to fight so hard on so many levels that personally my husband and I would not like to choose to go through it all again.

When the 28 week scan showed his underdeveloped brain our lives where temporarily crushed and we had to battle worry and anxiety the rest of our pregnancy.

When we were told to consider termination because there were chances of Zachariah not making it, our hearts were smashed into pieces, we prayed every day that we would get to meet our precious son.

This is not something I would not like to revisit.

With all this in mind, we are so truly happy and blessed to have Zachariah, and if it is not the bigger plan to have any more children, then Tim and I will accept that.

The benefits of just having one child are endless and I’m taking them as comfort at the moment.

He gets my undivided attention, which comes in handy where therapy and appointments are involved.

When I think about having another child in the mix I struggle to see it working, having a new born baby as well as a very heavy two year old, who is also completely reliant on me just doesn’t appear doable.

I know many others do it, and I respect them fully, but I’m not sure it’s for me.

You see the constant battle I have with myself? It’s exhausting!

So next time you think about asking someone, anyone, if they are planning another child, pause and think how it will affect them.

I love my boyo and everything he teaches me.

Rochelle, mummy to Zachariah xx

They have so many questions they want answered and so many concerns they are beginning to show.

It can be so hard trying to give them answers without absolutely mind boggling them at the same time or scaring them with the brutal facts.

However, I have always wanted to be open and honest with them.

They are the next generation and it’s important they learn the importance of inclusion and equality.

Young children are so curious!

They will ask quite matter of fact why Zachariah is in a big red chair and they are able to freely roam around.

They ask why Zachariah sleeps a lot and why he doesn’t see the same things they see.

Because we have always been so open from the start they are now really starting to understand, however their questions are getting harder to answer, sometimes because we just don’t know the answer ourselves.

One question was, “Why can’t he walk?”

I’ll be honest, I stuttered and looked to my friend who answered, “his muscles aren’t strong enough at the moment but he has equipment and people to help him”.

By answering their questions and giving them tips on how they can help him, they are learning so much more than if we cover it up or brush it under the carpet. They deserve to be listened to and answered.

Young children want to fix things!

My niece is an absolute sweetie! She is so caring and delicate, recently I received a picture through WhatsApp (shown below) with this written under it:

“I’ve drawn a different heart for Zachariah, because he can’t do the same things as we can.”

She noticed at four years old that Zachariah is different to her and is wanting to help him. I cried! I cried because of how beautiful it was, although Zachariah wasn’t with her she was thinking about him. 

The fact that it isn’t Zachariah’s heart but in fact his brain that has caused Zachariah to be delayed is beside the point, she has digested the information we have given her in her own way.

The same little niece will bring him a million and one toys to play with, taking the time to hold each one right up to his face and say “can you see it Zachy Pants?”, and the same little girl will stand beside him whilst he’s in his standing frame and occupy him as he isn’t too keen.

She’s patient and loving with her cousin.

The more we invest the more they will be aware.

This blog is dedicated to all those loving and caring children who want to better their understanding and help their friends with disabilities, who want to know more and who have passion at such young ages to make a difference!

I just hope that all the other families out there are encouraging them and spending time with them to talk about all kinds of disabilities to ensure we live in a world full of acceptance, understanding and equality.

I love the next generation and everything they teach me!

Rochelle, mummy to Zachariah xx

He’s moulded me into a new better person who now has an incredible amount of love to share and a lot of empathy for others.

I literally cannot remember my life before him.

We have a routine, we have places to go on certain days and people we invite over, taking each day in our own pace.

We have become best friends and have a real connection that’s so special.

Being attached at the hips for so long has now brought a lot of emotion as we begin to sort out his nursery for September.

I am feeling slightly overwhelmed that my son will be totally reliant on a complete stranger for a whole day, that I will be leaving him in an unknown place.

Even though he’s been out with family and friends without me, they know him and they know me and most importantly they know how I do things when it comes to Zachariah.

Whereas nursery nurses don’t have that extra knowledge, don’t get me wrong I have utter faith in them and I have chosen a nursery I feel is best for him, but us mummies just can’t help but worry over something!

Despite all this, I’m very excited!

Seeing how Zachariah is when surrounded by his friends I just know he’s going to love being part of a group.

He’ll get giddy on the fun atmosphere and the other children playing with him, and I’m sure he’ll pick up on a few things too.

We have chosen a mainstream nursery, firstly because it’s equipped and educated for children with disabilities and learning difficulties.

Secondly because I want him to experience mainstream before he goes to a school for children with special needs.

It’s now time for me to find myself again.

Look for hobbies, a career or maybe some voluntary work. Spend some time just being Rochelle!

Please leave comments on your experiences of your little ones starting nursery /school! 🙂

I love my boy and everything he teaches me.

Rochelle, mummy to Zachariah xxx

Fast forwarding past the wedding we decided to try for a baby, here is where our personalities really started to show, I was very quick to start stressing over another month passing but still not pregnant and Tim kept reassuring me that I needed to pretend we weren’t trying and just enjoy life.

It worked! We were having a baby boy!

It was at 28 weeks that things started to get rocky and we found out that Zachariah’s brain wasn’t developing the way it should be.

This was an absolute scare to us both.

I barely remember being in the meeting where we were told it was just so surreal!

I froze. I wept. I didn’t understand!

On the other hand Tim stepped up and asked questions, he cuddled me and told me that nothing the doctors had said would affect his love for our little boy, whether we had one day with him or many more it didn’t change the fact that Zachariah was our amazing little boy.

He was so calm and so strong. He held us all together.

Following this came a lot more meetings, scans and even an MRI, and throughout them all Tim would hold me and comfort me until our son was born 3 weeks early in 2014.

Now Zachariah has been in our lives for two years, and how amazing this time has been!

He’s such an incredible little boy full of love and giggles.

Tim is his best friend, they have a connection so strong that even I (who he spends most of his time with) can’t compete with.

This bond is so special.

Tim takes advantage of every minute he spends with Zachariah, he is enthusiastic, he’s fun, he’s positive.

Whenever I begin to question things, doubt myself as a Mother or worry about the future, Tim is there to lift my spirits and find the good in the situation.

Nothing seems too big or scary for Tim, he just embraces what we have and loves his son unconditionally.

We’ve recently found out that Zachariah’s condition is life shortening due to the way his brain has developed. Where we have a bumpy cauliflower-like brain, Zachariah has a smooth brain.

This has led to Zachariah having epilepsy, difficulties feeding and possible respiratory issues.

This information absolutely broke me!

I started to grieve that my little boy may not reach high school or become a teenager.

My eyes were red raw from the constant crying, the thoughts that went through my mind were shocking.

I started to lose enthusiasm to do his therapy and just wrap him in bubble wrap!

My husband on the other hand reminded me that Zachariah is still very much here in the present and that is what we should be focusing on.

We should cherish every moment and enjoy him! He said, and I quote ‘He is my son, and I love him, this doesn’t change that’.

No crying, No self pity, No grieving. Just pure and unconditional love for his Boy!

I’m not saying that I’m not going to shed another tear over my son, I most likely will, but I have made the decision to be more like my husband and try to enjoy every single moment we have with Zachariah, and not miss precious moments in grief or wondering what the future holds.

I love my Husband and everything he teaches me.

Rochelle,
Mummy to Zachariah.xx