From life-changing diagnosis at 2 to today - A young girl's remarkable journey.

This week has been emotional and overwhelming. In a good way.

This is no ordinary 'first?day of school' picture.

This is my daughter Sophia. And here's her awesome?story.

Three years ago, at the age of 2, our daughter was requested to have?an in-depth medical assessment.

As her mum and dad, and the post natal support team (do you call them that?!) we became very concerned at the alarmingly?slow rate of development. In every aspect - physically, emotionally, physiologically and mentally.?

Honestly, it was clear as day to me something wasn't right. She often looked very vacant, like she'd be looking right through you. She was extremely placid and didn't have a 'voice'. Barely responsive. I could've described her as having some qualities of a rag doll cat.

She could spend a worryingly long time just in one place, and you'd barely hear a peep. For any child, this was far from 'normal'.

Across a four-and-a-half-hour session, she was seen by six pediatric?nurse specialists and a Paediatric?Consultant. They assed everything - her speech, language, motor skills, communication, physical interaction, emotional interaction, walking, movement, listening, play, social skills and overall 'engaging'.

Following an agonizing?wait at the Medical Centre, the Pediatric Consultant invited us back in and delivered the news we both dreaded, but were waiting for ??

Sophia was officially diagnosed with Global Developmental Delay (GDD)

The Consultant drew a graph to explain roughly how she was tracking - drawing a line on the graph represented by 'normal' development. Then drew another line showing her as tracking well below 40/45%.?She was two yet was tracking as though she was less than 9 months old ??

She then drew a dotted line and painted a 'most likely' picture - it showed a huge gap between her line and the 'normal' line.

It's likely she may?never catch up and track below 50% all her life.

You must 'expect the worse'.

I know there's the standard cliche 'kids will catch up', but this was different.

So basically, there was no guarantee or certainty as to which areas (if any) would develop. Seemingly her life choices were taken away, we just didn't know which ones.

Our hearts sank. While we barely talked that day, we were almost telepathic when we said to each other

"We'll do everything we can to make sure she gets the support she needs to lead a happy life"

Backdrop

This was an intense period in our lives.

For those who've read about my own personal story will know that there was a lot more going on to compound this development.

It was also around this time that I was still in the early months of having left my high-profile job in the corporate world. At one of my lowest ebbs coming to terms with a mental health breakdown, burnout, and addiction. As well as moving from suicide ideation to being high risk of completing suicide.

This was not the time to feel sorry, but to dig deep to ensure I was there for my family, while at the same time going through therapy and reflections to get my own mental health/life back on track.

Both our lives (and our marriage) had to withstand the most immense pressure.

Take nothing for granted in life

Imagine having most of your life choices taken away at the age of 2.

Things many of us take for granted, in ourselves and our children, were all of a sudden taken away from our little girl. We have a son and so know first-hand what we take for granted as (Subhanallah) thankfully he has no diagnosis as it stands.

After the diagnosis, Covid hit 6 months after ???? ♂????? ♂?

These were crucial weeks, months where she needed all the professional help she could get. This meant additional, ongoing medical support all but disappeared for nearly 2 years, with the exception of the odd online call.

Due to miscommunication and departments not talking to each other, she was 'missed' by one or two departments for certain parts of her development.

She was also in hospital a handful of times, both planned (to have her tonsils/adenoids out and grommets put in) and unplanned (stopped eating and drinking for a few days).

At times it felt like the universe was conspiring against us.

It's been a pretty full on time for us as her parents. Luckily we got a lot of support from her nursery which allowed her to come in throughout Covid.

Our designated Senco (Special Educational Needs Co-ordinator) also helped us and the nursery when it came to funding, channelling resources and additional help.

Then came some green shoots.

Hope

Just under 18 months later, when she was around three and half years old, things slowly began to happen.

She started to 'wake up'.

Motor skills started to show. Her movement started to improve.

She started to walk a little (with the help of weighted shoes). It was a slow process initially, but she persisted.

Social skills,?speech and language began to emerge.

She started to communicate more and started to talk a little. Then a little more.

Words started to flow, and her vocabulary slowly increased. Then came short sentences. And they've kept coming in the last 6 months.

Even the Consultant has been gobsmacked by the rate of her progress.

In just 18 months she has transformed beyond recognition.

She's come alive in front of our own eyes.?

In many ways, it felt miraculous.

To the present day

Fast forward to this week; Monday was her first day of 'normal' school.?

Her uniform only just fits her, but how good does she look ??

Monday was also her 5th birthday ??

But to look at her this week, getting her dressed and taking her to school has had me on the verge of tears. And beaming pride.

The school have been brilliant - taking the time to understand her needs, working with authorities and Senco to put together?a plan?of support to give her every chance possible.

So what's she like now?

Words cannot describe how happy her demeanour and outlook on life is. The amount of joy she brings is off the scale!

She seems to have an 'uncomplicated mind'. She goes about her life and her mind seems to carry no excess 'baggage'. She's in her little world and does her own thing. She does her own thing, and she just gets on with life.*

(I should take a leaf out of her own book!).

She brings so much love and life to everyone who spends time with her.

Her emotional connection to us and everyone else is off the charts. She gives out a disproportionate amount of cuddles, hugs, compliments and affection.?

The determination, resilience and courage to have got to where she is from such a bleak diagnosis just 3 years ago blows my mind.

Her development now is nothing short of a blessing and miracle.

With thanks to Allah (God) that he has answered our wishes and prayers.??

Even our Consultant paediatrician?is astonished and gobsmacked by the rate of her development.?

"It was very unlikely to have happened like this in light of where she was 3 years ago", she said to us last month.

The future for her - who knows?

I still harbour doubts as to whether the education as is will suit her long term. She is a lot more of a free spirit. So we'll see.?

I couldn't give a sh!t . whether she makes it through school, or?if she's not 'successful' in life.?

Providing she is happy......everything else for us is a bonus.

If you've taken time to read this, thank you so so much ????

My final thoughts.?

Never take anything?for granted. Both in your own life and for your children.

Lastly, no matter how bad a place you're in. For whatever reason. Don't give up.

With unconditional love, the right support network, hope, resilience, faith (in Allah/God, or whomever you believe in) and prayer.

Just believe.