Isaac’s journey

I was so ill in hospital the day I was told I was pregnant. Seriosly ill with ovarian hyperstimulation syndrome, hooked up to a drip with a catherter and unable to do much without a lot of pain. But nothing could surpress my delight at finding out I was finally pregnant. The elation and excitement at the news spurred me on to recover and 5 days later I was home and able to enjoy the rest of my pregnancy. 2 weeks and two days after getting home I was back at hospital for an early scan and this was what we saw:
7 week scan
TWINS!
The frst 16 weeks I vomitted so much I lost a stone in weight, despite having two growing babies inside me. But things settled and I continued to work whilst having regular scans and check ups. I actually thought I was busy back then, working full time, keeping house and buying all the beautiful things that babies require. Ha! Try doing those things whilst actually having to look after two children and then you realy know what busy is!
Then on 7th Nov 2008 my world changed as Isaac Gabriel Joshua Gwynne entered the world weighing 6lb, 4 oz followed a minute later by Naomi Miracle Grace Gwynne weighing a petite 4lb 11oz. Beautiful and both so perfect.
9 months pregnant Before.
new family 24 Hours later.

And so the baby years, toddler years and pre-school years began. And this week those wonderful, exhausting, precious years come to an end as my baby boy begins full time education. I get to keep his twin sister at home another year and this time next year I will write a similar post marveling at all that she has achieved and enjoyed in those amazing years before school starts. But this one is in honour of my baby boy as he begins his adventure in full time education. So journey with me through the last 4 years and nine months and see how that tiny baby has grown to become a young boy full of character and energy and how he has faced so many challenges along the way. As I journeyed with this boy my life changed so dramatically that I will honestly never look at anyone the same ever again. He is being seperated from not only his mum and dad but his precious twin sister. But they will always be as close as this:
moses basket
looking
and this.

Isaac was a great eater and such a content baby. But a sicky baby too. He brought up a lot of milk but never cried. Eye contact was an issue even as a tiny baby but did improve a little as he approached his first birthday. Isaac was struggling to keep up with other babies and meet his milestones but I was told it was common with multiple births and not to worry. He was gaining weight and was progressing slowly. Here he is at 6 and a half months with his sister by his side helping to support him:
6 months
By 11 months he was catching up and now crawling and by a year he was sitting up unaided. Within a few months he mastered the art of pulling himself to stand:
1st birthday
pulling up
But then we hit a developmental block. We had no speech, only a few sounds and it was getting more obvious he had a significant eye squint. By 18 months referrals started to get made to a developmental peadiatrician. And everything changed. By the time he saw the paediatrician at 22 months we were still no further forward. He didn’t respond to his name, he had no words, eye contact was very poor and he was entrenched in his own world. Dependent heavily on routine and still not walking. Our house had just been repossessed and our world was turning uside down. We had moved miles away from friends, my mum was about to emigrate and then we heard that word for the first time: autism.
We felt lost. He looked lost.
lost
But things started to happen so quickly. Meetings, more meetings, people coming to the house to see the children, courses, professions I had only ever heard of at university suddenly start getting involved. I suddenly needed a diary, a filing system for paperwork and a crash course in a disability that seemed alien to the delights and cuddles my toddler was giving me daily.
He started nursery. Only a few hours at first. Then a few days. He was fast approaching 3 but still in the baby room at nursery. And still not walking or talking yet. And getting further behind by the day. It was all so scary. I had to trust God so much more, lean on my husband more and keep going when my heart was breaking. We applied for disability money and recieved word back in just 4 weeks. I didn’t want to read the reports that helped them make such a quick decision. I wasn’t ready.
He started scanning objects across his eyeline:
scanning
He cried so much:
crying

He refused to wear socks and showed no interest in toys. His only interest was food and sensory play:
space blanket
He started a specialist nursery and enjoyed going for a few hours 5 days a week. But progress was still incredibly slow. Just weeks before starting the specialist placement he took his first steps. But he was still very shaky and unbalanced and a few months later we recieved a mobility buggy. He was sent for more checks after having seizures. In July 2012 he was formally diagnosed as having classic autism, global developmental delay, severe learning difficulties and pica. Before we even had chance to digest this he was called a few months later for a 24 hour EEG to find out more about his seizures:
eeg
In the Decemeber of that same year we found out he has neurofibromatosis type 1. He has tumours on his brain causing his seizures. Tumours that could grow anywhere and at any time on any nerves in his body. But God has his hand on this boy and his story is touching so many people.
That month we moved house again and sadly he had to cope with yet another change of nursery. But this time he got to go with his twin sister even if they didn’t get to play in the same rooms. He had mastered the walking by now but still no speech and still behind in so many ways. Still in nappies. But growing, smiling, laughing and loving life.
As the nursery bus would pull up outside the house he would flap, almost fall out of the front steps in his hurry to get there and grab his beloved toy or book from us as he went. Never once a wave, not even a look at us..but happy in his own routine, doing what he loves.
But now he has finished and a new adventure awaits. Yesterday was the last time my babies got on that nursery bus together. He had no idea why I wanted to take his picture but I had to:
nursery bus
This was his last journey to nursery. The end of his pre-school years. The end of his stay-at-home-with-mum years.
This Wednesday he starts a new journey. A new season. He has came so far, been through so much, and even though he does not understand it, he hasn’t done any of that journey alone. I have went with him, dad has went with him and his twin sister has been to every appointment, been at every home visit and held his hand every day.
Now he has to journey alone…except he will never be alone as God is going with him. And so will mummy’s prayers.
Isaac’s journey just got more exciting…
please keep journeying with him as he starts his school for the first time this coming week.

The preparation begins…

I think I blinked and missed some years somewhere! Because today I took the children to visit Isaac’s new school for the first time. School? Surely not! It hardly seems like anytime at all that I was breast feeding this boy, putting him down to sleep in a Moses basket, cradling him in my arms and promising him mummy would always be there for him. 

It didn’t feel like it at the time but looking back I can see that even those tender moments holding my newborn baby in my arms were times of preparation. Filling him full of nutrition, strength, adoration and a firm knowledge that he was loved, wanted and special. Those were precious times. Times when he was perfect and secure in my arms and I was there to protect him and hold him close and be there whenever he wanted. Times of preparing him for an uncertain future. Time of preparing him for a world way bigger than he could ever imagine. Times of preparing his heart with a tight bond of love that whatever he had to go through in life he would never forget that mum adored him and treasured him dearly. 

We have always been close. I pray we always will be.

4 and a half years have passed. Life hasn’t been easy for this precious baby of mine but we have faced it all together. He has faced house moves, hospital appointments, changes to nurseries, two EEG’s, lots of infections and illnesses and so many people working with him. We went through his diagnosis together. We go to every hospital appointment together. It is my hand he takes when he wants something. It was my hair he ruffles when he needs to calm down. It is ‘mum’ he cries when it all gets too much for him. It it mum he wants first thing every morning and last thing every night. Only mum can give him his warm milk bottle. Mum knows what he wants when noone else does.

But now all of a sudden mum can not be there any more.

All of a sudden we have school on the horizon.

And mum can not even walk him to school. Or pick him up when school is over. Or even be there on his first day. Mum won’t be there at lunchtime. Won’t be able to change his nappy during the day or hold him when he gets tired. Mum can only think about him, pray for him and wonder how he is doing over 10 miles away at home. 

The school that Isaac is starting in August is just perfect for him. God could not have prepared a better school for him in any way. It has a hydrotherapy pool, a soft play room, light room, and multi-sensory room. The classes are very small and the staff ratio is very high. There are onsite specialists to help and support him. It is an answer to prayer. 

But Isaac must do this journey alone. He will have to get used to being transported by taxi by strangers. He will have to get used to a much longer school day and having a meal without his twin sister and parents there. He will have to adapt to so many changes. His entire world and all that he knows will be changing so much. He will once again have to get used to not having his twin sister around. Or mum or dad. 

And we will all need to get used to not having Isaac around too.

So the preparation begins for us all. More visits to the school, buying uniform, lots of talking and reading books to Naomi, lots of tears for mum and lots of special hugs for Isaac.

How did he ever get from that baby in a Moses basket to this handsome energetic 4 year old? I must have blinked and missed it!