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What is LOVE?

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

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Rochelle Followes

Meet Our Blogger

I am parent to a gorgeous little blue eyed boy who has complex needs. I have a Facebook page, 'my daily miracle' where I share our life with others. I am an active parent who's working hard to make Zachariah's world more inclusive for him. I like to look at the positives and celebrate everything, but I'm also not afraid to show it how it really is when life gets tough.

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