Bringing The World To Our Son

At first he just did what other babies did, but then when he got to three months old, we started to notice that he wasn’t developing like other babies were.

It was at his 12 week check when the doctor noticed that Zachariah wasn’t very alert nor was he fixing or following.

Straight away she referred us to the eye specialist team at the hospital.

A few weeks later his appointment came round. I remember it very clearly, they carried him into a very dark room, spun him around then stopped, turned on the light and watched his reaction.

With very few words they then put some solution into his eyes and guided us to the waiting room for a very long, uncomfortable wait until a lady came out and called him into her room.

She had a huge piece of equipment that she used to look through, into his eyes.

The next part of the story was a huge shock and it changed our lives forever!

The result showed that at just four months old, Zachariah was severely visually impaired!

The report read that his eyes were in perfect condition, however there was a technical issue where the nerves don’t get the messages from the eyes to the brain.

Although I didn’t really know what this meant, I was devastated that my little boy may never see mine or his Daddy’s face.

I was confused and lost.

I cried all the way home from the hospital, wondering how my little boy could see the world the way I do.

I would get frustrated that I couldn’t get a reaction from him or that I couldn’t play, ‘Peek-A-Boo!’ with him.

I would get upset that he didn’t follow me round the room and look at me in awe like I had seen other babies do with their mummies.

It wasn’t until we met a lady from Blind Children UK that I really started to understand what this diagnosis meant and that it wasn’t such sad news after all. She showed us a way!

She taught me how to play games with Zachariah, and showed me how to bring the world to him rather than him trying to find the world himself.

Through sensory stimulation and the amazing tool of my own voice, I very quickly became my son’s eyes.

I started to really get to know my boy and see the incredible little genius he was.

We now own every flashing toy, disco ball, and fairy lights in the shops; own various baby sensory DVDs; have the best light parties in town and have the most musical boy in the world!

We don’t really know what Zachariah can see, but we take comfort in how far he has come, and how happy he is.

He is on a journey of finding his world and now attends a group with other little friends who also have visual impairments on a similar journey.

I love my boy and everything he teaches me.

Rochelle, mummy to Zachariah xx

Friendships Are Like Gold

Having Zachariah has only made some of these friendships much more important and special. Not only have they become stronger but my son has adopted some more incredible aunties in addition to his family who absolutely dote on him.

Why are they so incredible?

They will text me before and after appointments, whether they are big or small. Not only this, but they will offer to come along if close family can’t make it.

They want all the details and will pray for anything that is needed, and research anything they don’t understand to ensure they are on this journey alongside us.

They are just as knowledgeable about Zachariah’s condition, therapy and development progress as I am.

They get excited about absolutely everything Zachariah accomplishes, I mean EVERYTHING!

Every smile and giggle, every time he catches your eye, they celebrate.

Having a son with very complex needs and severe visual impairment requires a lot of patience, there can sometimes be a long wait to receive a reaction from him, this patience is something my friends have.

They have such a special bond with him and it’s all because they have invested so much time to get to know and love him.

They teach their children how to communicate and play with Zachariah, inclusion for my son is one of my biggest goals that I aim for daily.

It is so important to me that he is never left behind, my friends children are beautiful little characters who make Zachariah most welcome to their activities and always talk to him so he knows they are there.

Sometimes this means that they push him around in his chair or they help dress him, all simple things to others but so precious to me.

Zachariah loves growing up around his friends, the craziness and the laughter they bring is priceless! I thank my friends for this!

Through all the laughter, tears and worry my friends have stood by me and my little family, they have loved, supported and encouraged me as a special needs mummy.

They plan days out together around Zachariah and ensure there’s something for him to do and somewhere accessible and actively seek places to recommend for him to go.

I do not know where I would be without them!

I love my friends and everything they do for me.

Rochelle, mummy to Zachariah xx

Tube vs Food: Are We Making The Right Decision?

He was weak and tired and needed it to be just a little easier to get milk. After trying everything we had to get him on the bottle for his health, his jaundice was very apparent and he was sleeping a lot.

Once he got the knack of drinking from a bottle, there was no stopping him, he was a greedy boy, nothing pleased me more than giving him a bottle and having to up the ounces so quickly.

Very soon it was the next stage! FOOD! And didn’t he just love it!

There was nothing Zachariah didn’t like, he would eat and eat and eat. I was so pleased to see him enjoy the adventures of food.

But then there was the drink, I tried to give him bits of water from his bottle, but he would struggle so much, he would gag and cough and almost choke from little bits of water.

I put it down to it being a different texture to milk, it was fast flowing and he would get used to it.

At seven months old he was referred to a Speech and Language Therapist. Who knew that they specialised in feeding as well as communication?

I remember feeling rather confident attending this meeting, as this was Zachariah’s strong point, he was good with his grub, and this was time for him to go to an appointment and show off his skills.

However when she watched him eat she was concerned, she started to talk about aspiration and a videofluoroscopy. What is she talking about?

This was the start of something else, another issue to to worry about, someone else to come to our home monthly. I was gutted.

The therapist started her visits and taught me how to feed Zachariah the safest way, he was introduced to thickener to allow him to have fluids and had to stick to a blended food diet, he tried little bits of toast and soft snacks, but it was just not worth it, it was such a hazard as he would gag and struggle.

He had a videofluoroscopy which showed he was aspirating and that concluded that it would be much safer for Zachariah to be tube fed. I was devastated. 

I didn’t really believe it, my little boy who loved food so much would have it taken away and have it pumped straight into his tummy instead.

His favourite part of the day was being ripped away!

At first we refused, said no to his consultant and no to the surgeon, we couldn’t give up on him yet.

A few months passed and it was clear that Zachariah was only struggling more and more, it wasn’t worth the risk anymore. I just wanted him to be safe.

I started to look at the positives, that he would have stress free days fighting with food when he wasn’t feeling great, he would get all of his medication as he wouldn’t be able to spit it out, and he would have more time for fun and therapy.

So now it’s the waiting game for his date to go and have a gastrostomy, and all I can question is whether or not we’re making the right decision!

I love my Boy!

Rochelle, Mummy to Zachariah. Xx

Is My Little Boy Becoming A Toddler Or Is Medication Changing Him?

Everyone who met Zachariah would tell me just how lucky I am to have such a beautiful, happy content boy, a boy who will smile at every little thing you do. They were indeed correct.

What concerns me about this lovely compliment is how do they see my son now when he’s having a bad day, when he’s tired and sleepy from seizures or  fed up from the constant therapy, do they still see what I see, an amazing, beautiful and determined little boy?

In November Zachariah was diagnosed with Epilepsy and pretty much started the medication straight away, they warned me that there are side effects, such as hair loss, tiredness and change in behavior.

This absolutely devastated me, I didn’t want to lose my happy little chappy, I wanted to keep him the way he was.

But then the protective side of me needed to do this as the epilepsy was no fun at all and it needed to be tamed.

I went with a friend to this meeting, who was the most supportive person I could have asked for, she comforted me and told me that it is for Zachariah’s best interest to have the medication. She was right! But so was the consultant!

Zachariah has become very temperamental and can cry at any little trigger, to sum it up he’s becoming a 2 year old! I’m not sure I can explain how this has made me feel, at first I was freaking out, I started to grieve over my happy, all smiling baby.

I was beginning to feel very drained and frustrated, sending a lot of hatred towards epilepsy for taking my son away.

But the more I pondered on this and spoke to friends the more I started to feel that maybe Zachariah was just developing, he was entering the world of, ‘being a toddler’.

This conclusion whether it be right or wrong comforted me like I never thought it would, my boy was choosing what emotion to express and he was expressing it so amazingly, he was telling me ‘no’ in his own way, he was communicating with me!

And guess what? I haven’t lost my son, as he’s very much still here, he is still lighting up every room with his gorgeous grin and his contagious smile, however he now comes with a little attitude!:)

I love my Son and everything he teaches me!

Rochelle, Mummy to Zachariah.