THE DAY I LOST MY MOJO

Last week started off well.  Middle of the week Jess had started to show signs of wanting to crawl, she had moved tentatively on all fours just a very short way before getting back down and rolling to where she wanted to go, but nevertheless we were quite excited about this.  Went to my physio group as usual and was told that I was progressing really well and would only need one more physio session.  This was music to my ears.

It was during this session that the physiotherapist asked me how my Granddaughter was doing and what was wrong with her.  I started to tell her that she was undiagnosed but her main problem was global developmental delay, I then went on to explain about SWAN and how many children out there are undiagnosed. 

This lady was obviously concerned and said she had never heard of SWAN or that children could be without a diagnosis

 “How old is she?” she asked

 “Nearly two” I replied finding myself faltering a bit,  “But she has just started to try and crawl”.

At this point I started to sob quite uncontrollably.  The poor woman was full of apologies saying she should never have asked, but I want to tell people, I think it is important people are aware.  Eventually I did manage to stop crying and realised that not only was the physiotherapist looking like she wanted to burst into tears, but also another lady in the group was quickly dabbing her eyes with a tissue. 

I don’t know what caused that emotional meltdown, normally I can talk quite happily about Jess and do not mind people asking questions, infact I welcome it as I would rather someone know the facts rather than come to their own conclusions.

I remember Nanny Joan telling me that she had had the same experience some weeks ago in the bank when someone had asked her how Jess was doing.

Sometimes we are caught off guard and raw emotions, which we normally keep well hidden, come flooding to the surface.

Matters seemed to be made worse when that afternoon Emma called me to say that she had received a report from the Educational Psychologist who had been out to assess what needs Jess would require with regards to schooling etc.  This is known as a Statement.  The report basically said that Jess had an average developmental age of between 3 & 6 months.  I imagined how upsetting this must have been for Emma, although we all know that Jess is well behind for her age seeing it written down is hard.  I shed more tears that evening.

Friday evening there was a video posted by Emma on Facebook – you can watch it below.  I watched it in disbelief.  Jess was no longer crawling a tiny way but was going halfway across the room.  The video is especially lovely because if you have the sound on you can hear Jessica’s five year old Sister Natalie shouting encouragement at the end.  Natalie is so good with Jess and I am so proud of her.

This was the tonic we needed.  Once again Jess has given us a timely reminder that despite everyone’s ‘professional’ opinion she is still progressing and she doesn’t care how long it takes.

I have never been quite sure what the term ‘mojo’ actually means, but one thing is for sure I have definitely got it back!

NOW WATCH THE VIDEO BY CLICKING HERE  THEN DOUBLE CLICK PICTURE TO LOAD

A MATTER OF OPINION

Last week I was given two opinions by professional people on how to proceed further with my recovering broken wrist. It had been 5 weeks since my accident and I was feeling fine. Last consultation the week before was good, apparently I was doing very well and could start using my hand again for everyday things slowly at first but gradually building up.  So I was very optimistic.

I asked of the first person if I could learn any specific exercises that would help strengthen my wrist in preparation for being able to pick up Jess again and I also asked about driving as the monthly bus pass I had purchased had only a few days left to run.  I explained what lifting was required.  Unfortunately the advice given was not the optimistic approach I was hoping for.

They were not sure if I should drive due to pulling up the handbrake, perhaps I should leave it a while longer. They did not really want me to think about lifting or even work up to it for another two weeks although they actually preferred three!  I was still supposed to be having plenty of rest during the day in their opinion. I came out feeling very depressed.  I had been doing my physio daily even during the very painful first few weeks and I thought it was paying off.  I have always been in tune with my body, I know that if I try something and it does not feel right it is best to do less for a while, but I really was feeling much stronger.  I started to think it had all been a waste of time but a cup of coffee and a custard tart got me back on track.

By the time I got to the second professional I had already decided what I was going to do as my initial disappointment had now turned to down-right pigheadedness! But I would put the same questions anyway.

This person said I was doing really well.  I decided to mention about driving and was honest and asked if there would be a problem with the handbrake.

 ‘Squeeze my hand with your left one as hard as you can’ they said.  I did.  Once I had released it was declared that my grip was strong so I should have no problem with the hand brake and they could not see any reason not to drive as I had the full range of required movements. ONE BOX TICKED!! 

Now onto the question of lifting.  Again I explained about Jess and how and when I had to lift her and also gave the opinion of the other person.  ‘Don’t try lifting her straight away or anything’ they said ‘or you may experience soft tissue damage’ (first person had mentioned this),

‘ But you can start building up gradually over the next couple of weeks and

 your body will tell you how far to go, you will soon know if you are not ready for certain things yet’. 

How? I asked

‘It will hurt’ was the reply.  ENOUGH SAID.

I came out with a smile. 

Upon reflection both had given me the same sort of advice, i.e. not to rush into things and build up slowly (which I fully intend to do), but the second piece of advice was given in a ‘no nonsense/no frills’ way which is the way I like to deal with things.  It gave me light at the end of the tunnel rather than leaving me thinking this was never going to end and my life would be forever changed.

I suppose I have always had this stubborn streak, once I have made up my mind about something you will find it very hard to persuade me otherwise.  I have never been one to dwell on things for long, perhaps if I had a motto it would be ‘just deal with it’. 

My Mother was just the same.  She was proud of her stubbornness and would often boast about it. 

‘The Grimshaws have always been renowned for their stubborn streak’ she used to say, proud of her Lancashire roots. 

She was also a very strong lady that did not believe in self-pity or dwelling on bad times.  She had a difficult childhood (she would tell me stories when I was young), her Father died when she was 3years old and her Mother was left with four children to bring up on her own. No social services to fall back on then, so they did not have a lot of money.  Her Mother took on two jobs to make ends meet, leaving the eldest Sister in charge of the younger ones.  My Mum said that her Mum would often go without food herself so there would be enough for her children.  She did re-marry years later to the man who I knew as Granddad and things got a little better as he was a miner and was able to bring in a wage, but unfortunately by then the damage caused by overworking and under-eating had been done and my Grandmother died when my Mum was barely out of her teens.  The war years followed which brought hardship of a different kind.  My parents loved each other very much and were not afraid to show it, so when my Dad passed away it was very difficult for my Mum.

Despite all of this she never seemed to complain about life.  She knew exactly what she wanted, was not afraid to go for it and was never afraid to speak her mind.

On my way back I began to think about my Mum and realised that the Grimshaw stubbornness has been handed down.  Not just to me but to my Daughters too.  My Mum passed away some years ago and although she never got to see her second Great-Grandchild, she did get to see her first when she was a baby.  I sometimes tell Natalie about her Great Nanny Irene and she has seen photos of her.

Having a child with a disability is never easy.  Having a child with an undiagnosed disability also brings a new set of problems to overcome as there is nothing to compare with, no guidelines.  There is no blueprint for the future; every day has to be taken as it comes.

I have never heard Emma complaining about how things are with regards to Jess or feeling sorry for herself.  I am sure there are days when she feels like it and who could blame her?  On the other hand I have been there when she has stood her ground with the medical profession, especially in the early days when these people refused to take her seriously.  I have stood by proudly knowing that if the chips are down she is a force to be reckoned with when it comes to the welfare of her family.

In my mind on such occasions I can see my Mum with a knowing smile, the stubbornness of the Grimshaws strikes again!

TEARS OF HAPPINESS WHEN MEETING HER GREAT GRANDDAUGHTER FOR THE FIRST TIME

A FEW MONTHS LATER SHARING A PRIVATE JOKE TOGETHER!

I am writing this post as part of the Define Normal blog challenge  http://www.justbringthechocolate.com/define-normal/