Life seems to be changing a little around the Cox household, or should I say attitudes (not that any of us have attitudes – I am sure you know what I mean!)

We are starting to look forward and be able to smile.  After nearly six years of wondering how we can keep on top of Toby’s Cerebral Palsy, and how we can maintain his mobility, we are now starting to think new and positive thoughts.

It is Toby’s birthday soon, he will be six, and for the first time we are throwing a party for him where other children are invited.  Up until now it has been family parties.

Toby has been to other children’s birthday parties, and had a super time, but up until now I have not felt ready to throw one of our own.  Sometimes just seeing so many other mobile children hurts like anything – but I have learnt to hide my feelings very well and save the tears for when he is in bed.

I am not a mum “close to the edge” - far from it.  It is just the way of dealing with the anguish.  I remember once breaking down at the doctors, this was when Toby was about 2 years old.  The doctor diagnosed Post Natal Depression, (I had gone in with knee pain due to carrying Toby everywhere!!!) 

I was devastated, was this really what I had?  I knew that I felt extremely sad, and had been for a while – but this was all very new for me.  The massive learning curve that I was on -  getting to grips with Toby’s diagnosis, making sure physio was adhered to,  the constant sleepless nights, all the medical appointments, I had no idea that this was what I had.

After long talks with Ian, and a lot of soul searching that I decided that I was not actually depressed, it was just a situation that I had to learn to live with.  I had to accept that life was changing and would not follow its natural path as it had done with Louis.  Things were going to be very different, and it was going to be upsetting.  Life with Toby was a sheer joy, he was and is the most gorgeous little chap, but I was constantly being reminded of how he was so different, how he was not reaching milestones, seeing new babies born, progressing and going on to walk, and Toby was still staying at the same stage – it was simply devastating! But I did not have post natal depression, I was sure of it; it was just a case that I had to learn to accept I was going to cry a lot, I was going to have some really bad days when everything seemed glum, the future seemed dark and grey. 

But this was just how it was now meant to be – it did not mean I was depressed.  I had to resign myself with this new way of life, but thankfully I had so many good friends around me to help.  I was also put in touch with other mums in the same position, and together we all sought comfort and sanctuary on the really bleak days.

Toby was extremely unlucky, he was also extremely lucky; as he could have been so much worse given how poorly he was when born.  

So we spent our days, stretching, exercising, watching, and all the time trying to get used to this new way of life. 

Life was not spent having fun, exploring, toddler groups, music groups,  days out, it was spent assessing how tired Toby was, could he manage physio that day, administering medicines, stretching him, resting him. And appointments, appointments, appointments.

Seeing all the other children reach their expected milestones was another grieving time, it was just another reminder that all was not well with Toby.

I would sit and watch, smile and converse, and inside tears were pouring whilst I watched my little boy struggle to even sit safely.

And this is how life has been, up until last year when we heard about SDR.  I have documented how life has been since we made our decision, and obviously how Toby has changed as a little boy since the operation – so I will not go into that.

What I would like to say is how my visions are changing, about myself.

I had not realised how much of my life I had put on hold.  I did not mind putting myself on hold, when you have children, you cannot order how they will arrive and you must take the rough with the smooth, but it feels nice to be able to start to reclaim some things for myself once again.

I am now starting to be able to look forward and see Toby being more independent in the coming months and years.  This in turn has filled me with a new found happiness that I forgot I could feel. 

In fact it is six years since I felt this sort of happiness and that is a bloody long time to go feeling glum!!!

Do not get me wrong, I do not think all is well and rosy, Toby is obviously quite different from other kids his age, he has a lot of catching up to do, both emotionally and academically, and we still have a massive mountain of physio to climb to get Toby to where he needs to be – but positivity is starting to come back into my life.

The last six years have been spent climbing on and off my portable soap box fighting and voicing my concerns about treatment plans, questioning ideas, and querying results.

 Doctors through out the South West must have quivered in their shoes at the thought of Toby’s name on their waiting list, knowing his mum was about to go in and question and query all they had to say.  Blatantly asking for their email address or that of their secretary to follow up any queries that I might have, asking them to spell out and repeat terms that were being used in order to try and confuse me.  (I would encourage any mum to take notes into consultations, and take notes whilst in the consultation – it is sometimes very interesting to compare their synopsis of the meeting to yours when their letter eventually comes through)

When I look back, this was the only way I could have behaved, as this guaranteed Toby had access to every facility that he needed to ensure his needs were being met. 

 I have always been known as being a strong and forthright person, I did not get to where I am with Toby today being meek and mild, and I am most definitely nobodies “puppet” and not at all naïve.  It has been suggested along the way that he perhaps has got his stubborn streak from me!!!!!  But that is not a bad thing – I do not think! 

Toby has driven all of his own advances; I have merely been there to ensure that these advances can be made.

Today we rec’d some very, very exciting news, this is still in the very early stages of its being, but I am a very proud mummy who is absolutely beaming with pride at the moment!!!!!!

I live and breath for my children, I am like a mother lion when anyone tries to take advantage, and I am like the most annoying proud mummy when I am shouting their achievements.

One such achievement his week is foot/leg raises, last week Toby could only manage 10, this week he can manage 15, and 4 weeks ago he could maintain his balance for 5 seconds, this week he is pushing two minutes – small gains to anyone not fully aware of the enormity of what he has been through, but to us they are massive leaps and worthy of the stout round of applause he so demands!

The good times are ahead, and I am taking the advise of the wise –

Steer clear of all negativity and focus purely on the positive, these positive feelings have been along time in coming, and I am not going to let anyone spoil them flowing back into my life.

So Toby’s 6^th birthday party is taking shape, it is a bowling party,  which is something that Toby loves,  it also places less emphasis on mobility for him and he can quite easily manage with the short walks backwards and forwards to the bowling lane.

He has with great precision gone through the invitation list, with Daisy his darling girlfriend being head of the list!  It will be a fun time and he is so excited, in fact too excited and is starting to pester already as to how much longer he has to wait!!!!