Years ago, when I was a mere 25yrs old, ( a life time ago!)  and working as a civil servant in a huge office, I was summoned to the Directors office one morning.

The director explained that he would like me to step in as his Personal Assistant, for the foreseeable future.  I was thrilled, and also taken aback as I had not been there that long.

It was explained that he needed someone who he could trust implicitly, who was articulate, and he thought I was up to the job!

He spent a lot of his time out of the office, a lot of our communications were via mobile phones (which in those days were the size of a house brick!!) and email was only just starting to be used, diaries were actual books, and it was a very demanding job.

I was only a wee 25yrs old, but I was loving it.  I had my own large swish office, huge responsibility and yes, it was challenging, but at the same time, extremely rewarding. We worked well together for over a year, and it was a shame when it had to come to an end.  Our Government dept was privatized, and I then took over the position as Military Overseas manager, dealing with units that were away on manoeuvres, my boss took redundancy and we parted company.

Fast forward to May this year, when I was fund-raising in Curry’s megastore.  Who should walk through the tills  - but my former boss. I called him by name and asked if he would like to buy a raffle ticket,  I must say he was taken aback that I knew who he was. 

I then reminded him of our time together 15 years previously, and we spent a good while reminiscing and catching up.

He bought some raffle tickets, we wished each other well, and that was that.

Up until yesterday -   yesterday was a very reflective and sad day in our house – I will explain why in a minute, but I got home from work, and quickly checked email before going to pick up Toby from school.

There in my inbox was a mail from my former boss,  he had left me that day in Curry’s and decided he wanted to do something to help Toby.  He had organized an event, and one of his friends had also requested that for his 50^th birthday, he receive donations to Toby physio fund and not receive gifts.

It was a lovely mail to receive.  He fully understood that we had closed Toby’s fund, but also fully appreciated that the ongoing physio costs were huge, and he still wanted to go ahead and donate this money he had raised to my little angel.  What a complete uplifter of an email it was!   There are some truly generous and genuine people out there, and it was a pleasure to work for him all that time ago, to be given the chance and the opportunities  that he gave me, and to come back all these years later and help my little Toby,  demonstrates what a true gentleman he is.

And so to why was yesterday a sad day? – yesterday was the 1^st anniversary that a small part of me died, it was the day that Toby had his first life threatening seizure.

It was the day that I said goodbye to being carefree and worriless.

It was the day that I started to kiss my little boy nighty-nights and hope that he is still with us in the morning.

It was the day that marked the beginning of the time that  – I now have to lay out a set of clothes incase I have to go to A&E in the middle of the night.

I was the day that means I can only ever have a small drink on a evening so that I am always fully aware of what is going on.

It was the beginning of the time that I can never sleep deeply again as I have one ear open listening for warning signs.

It was the day I started carrying emergency medication around with me that is so strong, it is only issued in teaspoon amounts – to save Toby’s life should he have another seizure.

It was the day that I had to plan my life around never being more than a few miles away from him at any time incase it happens again and I cannot get to him in time.

It was the day that I plan our lives around never being far from an A&E unit wherever we are.

It was the day that we started living with monitors around the house, monitoring noise and movements.

Ian lives with the same dark cloud permanently over his head also, the strain and the stress is so buckling and heavy that we amaze each other how we get through it all.

So perhaps you can understand that this,  coupled with the disability that Toby has, is quite a difficult situation to be in.  Nothing can ever take the seizure problem away,  it is a permanent part of our lives that is here to stay.

Hence why the whole decision to take Toby to The USA was so difficult, it meant taking him from the safety that I had worked to establish at home,  to the other side of the world and it just seem so daunting.  It was a “no brainer”,  he had to have the operation, and I had to overcome my fears, do the best I could and make arrangements that every part of the trip was as risk free as possible.

Into all of this was then thrown the fund-raising,  wowee, could we take on much more???!!! 

£36,000 was a huge amount to raise and we needed all the help we could get. 

It was such a traumatic time, coupled with what we were already living with at home,  we were truly living on thin wires. 

How did we cope,  well we didn’t! Especially me,  and as a direct  result of some other things that were also happening at the time,  I was at an all time low.  Vulnerable – you could have pushed me over, emotional – I  was crying all the time, tired! – you do not even want to go there! 

I hope that I am now getting stronger and finding the reserves to try and pull myself from this dark hole I was thrown into.  Where as Toby is working hard to building his muscles, I am working hard to re-build my emotions.

I am eternally grateful for all the marvellous help that we received in getting Toby his operation, I saw some true acts of humbling compassion.  What a truly wonderful amazing lot you have been.

And so to try to make myself stronger and try to recover, I am trying to rest more, take more time out, talk more (and this blog therapy helps lots). Coming off Facebook was a big decision, but one I had to make, and it is nice to have some privacy again, and not be able to see that I am the topic of ill informed nasty “statuses”- I have had a lot of questions as to why I am no longer on there! Maybe I am still a "hot topic" but not being able to see it is good enough for me.

Tonight, I am being taken out to a very sumptuous restaurant by some lovely friends,  it is a chance to dress up, chill out and have some ‘me’ time – with the reassuring knowledge that Ian is at home taking care of our little angels, watching over Toby whilst he sleeps.

And so I am glad to put yesterday behind me, it was a horrible anniversary, and I know that the next one is just around the corner,  the 28^th November, this is the date of his second seizure – I just need to be able to put that one behind me, that will then give us one whole clear year since anything has happened, maybe then I can exhale and relax a little – although knowing myself very well, that will not be the case!