Fair Words Butter No Parsnips

June 29, 2011

Validation…

Filed under: Blogging — jacksmum @ 5:30 pm
Tags: , , ,

A couple of weeks ago we took a trip to hospital. Jack had been in pain with his left hip for quite a few days, so upon advice from his community nurse, off Jack & I trotted to be seen. Upon examination, Jack was diagnosed with constipation and I was told to increase his medication which would hopefully sort things out.

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.

March 10, 2009

Just Another Day In Paradise….

Filed under: Blogging,family life — jacksmum @ 8:15 am
Tags: , ,

Shouldn’t really be writing on here right now – need to be getting Matthew & Hannah ready for school! 

Jack went into respite care yesterday….the first break we have had in a good few weeks.  Trouble is the older Jack gets and the more expressive he is getting about his likes and dislikes…and for some reason he seems to hate being away from home. 

We had marvellous plans for tonight…taking Matty and Hannah to cinema…something we can’t do with Jack as any sort of exposure to cinema screens or tv for too long will set him off with his seizures.  However I had a call from respite last night at 9.30pm…seems Jack has had a bad day with his seizures…..so not sure how the day will pan out.  On average Jack will perhaps have two seizures a fortnight when he is at home, but whenever he goes to respite he has a terrible time…three seizures in one day is not normal for Jack. 

I will ring respite when I get back off school run….and see how he’s doing.  Would just be typical that I have to go and pick him up….and as usual it will be just one of us doing the cinema trip with the other two.  Always ends up like that these days.  As much as I love my son – and believe me I would be desolate without him….I sometimes yearn so much for “normal” family life…

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