First and foremost, Jack is doing really well.  He’s gained weight thanks to the new additions to his diet and he looks fantastic.  He’s not that well in himself at the time of writing.  His seizures have been causing him problems over the last day or so and he’s off school today, resting in bed.

Since the start of the new school year I have been very busy – hence no blog post!  And in the run up to xmas it’s not getting much quieter.  Paul will be getting more busy at work in the next few weeks that’s for sure, so I will be dealing with everything here by myself – but then that’s the norm for us I suppose!

Those are words I never thought I’d hear myself say. But my beautiful brave boy has showed them all….just as my instinct told me he might well do. The thing is, when you’ve got medical specialists telling you that “the only thing that will come of the pregnancy is a post mortem result”, you don’t dare to hope. But something deep within me (apart from personal belief) made me defiantly believe that they were wrong.

Never mistrust your instinct.

We are on holiday for the week in Bacton, a small seaside village in norfolk. For the first time ever I’ve left Jack in respite while we come away. I really wrestled with guilt over my decision, but I decided that just for once my other children deserved a holiday away from all the complications of daily life. Plus I have to admit I needed a break from it too, as did Paul.  Last night I slept more soundly than I have for years, maybe the sea air has a lot to do with that, or maybe its the miles we’ve walked.

Today we’ve had lunch at a lovely pub in Bacton called The Poachers Pocket. It’s such a gorgeous day that we sat outside and the view was stunning (see photo below).

Bacton itself is not at all commercialized, and is very clean and very VERY quiet. Total bliss.

I probably won’t be able to upload this until I get home….3g and wi-fi here isn’t hugely reliable – but we are having the BEST time.

When I was a child, I hated Sports Day with a passion.  I never won anything and it really wasn’t my thing anyway.  My most vivid memory of Sports Day was when I decided that maybe the best way to win the running race was to run like The Bionic Woman.  She was pretty much my heroine back then, and her running shots were always shown in slow motion.  So that’s what I did.  I ran in slow motion.  Obviously I didn’t win the race, but you can’t blame my train of thought…and I was only 6 at the time.

Sports Days have changed so much now; no more egg and spoon race with a big heavy white china type egg that carried the weight of a brick if it dropped on your toe.  No more wheelbarrow race, or three-legged race…much too much of a headache for health and safety I imagine.  But last year I was delighted to see that Hannah’s class actually did the Sack Race!  Hurrah!  A blast from the past.

Matthew has never really shown a competitive streak (like me), but I am amazed to see that Hannah takes after her Dad, and on the day displayed determination of steel and was adamant that the first place sticker would be hers!  She was as good as her word, and as I was filming the race, you will now get to see not only her victory (she is the one in the yellow sack by the way), but also my reaction.  I was overjoyed as you can tell.  Enjoy…

Jack will be home on Thursday, but in the meantime I’ve been going through some recent photos, and as I feel in a sharing mood, here they are. My beautiful boy…

Basically this should spell the end of me sleeping with one ear open just in case Jack has a seizure, as this nifty gadget should let me know. Obviously it will take some time to set it up to Jacks specifications…as every person is different. And it won’t replace my nightly checks. But this can only be a positive in assisting & alerting me to Jacks needs during the night.

As usual, no one told me about Muir Maxwell. It was down to my own research that alerted me to their very existence. If you know of any child in the UK that would benefit of an epilepsy alarm, please visit http://muirmaxwelltrust.com for more information.

Now whilst we were waiting to be seen, I was asked if I would talk to two medical students who needed practice on taking notes from patients or carers, particularly when they have the colourful medical history that Jack has. Years ago when Jack spent much of his life in & out of hospital I used to be interviewed quite a bit, but as the last few years have seen us not need as much medical assistance, I consider myself a little out of practice.

On to the ward trotted two young men – who were in their early/mid twenties, carrying clipboards (they might have actually been note books, I can’t really remember) and as they approached the ward sister and asked for permission to talk to some parents I thought “oh God, please no med students…I am just too tired”, but as they made a beeline for me (just like the old days), something strange happened.  My spine straightened, I cleared my throat and upon them asking to talk to me I said “yes of course, pull up a chair”.  All the time I was doing this my brain was shouting What ya doing???  What about those five minutes of peace and quiet you were going to use to catch up on your emails and Twitter!!!  We started off by talking about my pregnancy with Jack. It has actually been a long while since I’ve verbally run through what happened, although I do write about it all the time on this blog and on Jacks Website. We also spoke of Jack’s early years and all the diagnoses that have turned out to be incorrect.  We spoke about all his medication, and of medication that he’s taking that was discontinued for whatever reason.  We spoke of my pregnancies with Matthew & Hannah, and what my feelings were during that time.  We spoke about Jack’s general health, his schooling, the adaptations to our home, support that we get (or rather don’t get because of beaurocrocy) and we spoke about my plans for Jack’s future….and then they asked me about my plans.

Now having a child with such profound special needs as Jack, I never really made plans for my future.  I see caring for him for the rest of my life as my future.  I made the decision to bring him into the world, and I made the decision not to terminate his life before it had even begun.  One of the doctors who was trying to persuade me to have an abortion couldn’t put the case across strongly enough that “my life would be over” if I remained determined to continue with my pregnancy.  Yes my life has been compromised to a degree – no more boozy holidays abroad etc, but I wouldn’t say it’s been ruined!  Looking at it from a positive point of view I would have to say that having Jack has enriched my life!

All of a sudden one of these handsome young men asked me a question I wasn’t prepared for;

“Have you ever thought of going to medical school?”

I was drinking a cup of tea at the time and he nearly ended up being sprayed with it as I choked and asked him to repeat the question.  He didn’t seem to want to take no for an answer.  I tried every excuse under the sun for saying no; too old, past it, had my chance and missed it, and that old chestnut; “it’s too late for me – or it will be by the time Jack isn’t around any longer”.  He told me all about a lady who was at the same stage of GP training as him – and she’s in her early 40′s.  And although I don’t see me going into that area of medicine, I hope that one day I do get to share the difference and all the things that Jack has taught me.  I see my role as somehow supporting other parents perhaps…who knows.  However, young man remained adamant, and as they got up to leave (after an hour) he turned to me and said “maybe see you in class one day”.  The other chap retorted “no, she’ll be the one at the front teaching us!”.

Now I know that this was all probably lip service – that they were probably trying to boost my confidence, but right at that moment I felt like Kelly Mcgillis in Top Gun. I felt absolutely invincible, and yes for those few moments following that conversation I felt like Yes, I do a bloody good job.  I work hard.  Yes I’m just a carer, but actually there is nobody on this planet that can look after my son as well as I do.  I fight battles for Jack, and just because I don’t always win them…I still fight them…and I fight them damn well.  In fact on reflection, and hearing myself give an honest verbal account of all that we’ve been through in the last 16 years I don’t honestly know how I’ve stayed sane.  But guess what…I have.

So no, I don’t know what the future holds for me, and I’m not going to worry about it…but I’ve realised that sometimes we all need a nudge to remind us that we are intelligent human beings.  I hope my conversation with those students helped them – perhaps in a written assignment, who knows.  But they helped me more than they will ever know.  They gave me the validation that I haven’t had in so long.  They made me see myself as a person and not just a mother/carer/wife….they made me see me.

With this in mind, and given that I now have 16 years experience of motherhood (both with a child with special needs and two healthy children) I’ve often wondered what advice I would give to myself if I could go back in time to 1995;

1. Your life WILL change for ever.  You can ignore what you’re told if you want, but it’s true and you’d best start getting used to the fact!
2. Doctors will always give you “worst case scenario” opinions.  They have to.  It’s their job to make sure you are informed as to any outcomes of what you are dealing with.  It’s nothing personal, they have nothing against you and Jack personally. It also certainly does not mean that there will never be any positives to your situation.  Life has a wonderful habit of surprising you when you least expect it!
3. Following on from no. 2, You will occasionally interact with doctors (especially those who are on the board of any NHS trusts) who believe that a profoundly disabled child that could’ve been aborted really is a waste of NHS resources and nothing more.  They won’t try to prolong Jacks life, and yes they will try to induce a situation where Jack will die.  Note:  And before anyone contacts me about this statement – Yes it’s true, I’ve known it to happen to us and to other families as well.  Be strong.  Fight for what you believe is right where your child is concerned.  Your gut instinct will NEVER be wrong.
4. Have faith in your child.   He will surprise you, and miracles really can happen.
5. Cherish every single day you have with your children because a) they grow up REALLY fast, plus in the case of Jack every good day is one to be celebrated, because you never know when the next hurdle is around the corner!
6. Don’t allow your lives to revolve around medical appointments – especially those that aren’t vital.  Take time out from beaurocrocy and try to smell the roses every now and then.
7. In the words of Flylady, DON’T SWEAT THE SMALL STUFF.  It’s really not that important in the grand scheme of things.
8. Try not to dwell on the future – however bleak it may be looking at the time.  Take care of today and let tomorrow take care of itself.  Nobody really knows how life will or will not pan out for you or your children.
9. Be as organised as you can with paperwork, because with a child with special needs there is LOADS.  Use a diary or calendar to keep track of appointments, conversations, hospital admissions.  Being organised will see you through this.
10. Take time out for yourself.  Utterly vital this one.  I spent the first 3 years of Jacks life looking like a bag lady.  I was overweight and as money was short all of my clothes came from charity shops (and although I still  love charity shops, I always seemed to pick out the comfy stuff that made me look horrific).  When Jack was three, I joined a slimming club, and learned about healthy eating, excercise, and I actually learned how to cook (properly).  The results of this were astounding and I lost 4 and a half stone that year.  However, stressful times still see me hitting the fridge – although in line with my decision at the end of last year (after a horrific 12 months) to prioritize stressful situations, I have once again been focused on what I’m putting into my body and have lost a stone since New Year.  Taking time out for yourself doesn’t just have to be about weight loss, it can be anything; reading a book, taking a walk, even just going outside to sit in the sun.  It’s just time for YOU.

So there you have it.  That’s what I’d say to me all those years ago if I could.  The thing is….I wouldn’t have listened.  Everyone has to make up their own list of do’s/don’ts.  The best lessons in life are those that are earned by experience.