The Guilt of Respite

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For the first time today, I used the 5 hours that GG was in holiday club to go out with my other two children (and not for me to work). We were all excited  – although tried to not show that in front of GG. It was a 5 precious hours that we chose to spend outdoors, exploring the beautiful local countryside and walking the puppies. It was a glorious day and we had a great time.

In all honesty, I did not miss the screeching, the stressing over whether GG will drink and her refusal to use an unfamiliar toilet. Hauling the buggy in and out of the car and not being able to get in and out of the tea shop were welcome upsides.

I absolutely loved being able to dawdle and explore, GG hates being still in her buggy so stopping is never an option. We visited the Birds of Prey Centre where GG would have struggled with the noise. We enjoyed the simple pleasure of being able to run through the woods with the dogs, and for me being able to watch the others on the climbing frame, without having to join in to help GG around.

GG on the other hand had a lovely day out. Along with some of her school friends, she came home full of smiles, an empty lunchbox and keen to go back again tomorrow.

Perfect you would think so why do I feel so guilty. It is because I missed GG’s smile as much as I missed her screeches. I missed her giggles as much as I missed the inevitable tears. I missed the simple pleasure GG takes in a cheese sandwich whilst my others devoured lunch without a thought.

It felt like we were incomplete as much as it felt a relief to have a fun day without the additional challenges. Every photo I took was missing something. Perhaps in time I will come to accept this new phase in our lives. I know how much we all need some time out, GG’s siblings in particular, but I wish with all my heart that it didn’t have to be like this.

2017 GG’s Best Year Yet!

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The past year has been a whirlwind  with significant changes in our lives and for GG it has, without doubt, been her best year yet.

The Big Move…

The big news of course was the house move, 200 miles from all that GG had ever known, to our new life in the country. The move has proven to be the best thing we could have done. We have the space for all that GG benefits from – a ball pool in her Peppa Pig bedroom, enough room to (clumsily) push her baby’s pushchair around the house and space to play away from her noisy younger brother. The outdoor space is even better and the investment in a sunken trampoline that GG can access without support has given her a new level of freedom.

The New School….

With the move has come a new school where GG has settled incredibly well. Described as the ‘mother hen’ in her classroom, GG has developed friendships and has made progress beyond our expectations. Her annual review started with ‘What do we like and admire about GG’ – it was an uplifting and positive experience, no longer fighting for her every need but surrounded by a team who could not be more helpful.

GG’s Busy Social Life….

The social opportunities have expanded as well – we have managed to replicate horse riding, swimming and Brownies and GG has adapted well. The addition of a local boccia group which her siblings join in too represents truly inclusive sports. Holiday club options have also worked well with GG happy to get on the bus with her packed lunch. Our precious girl has such a busy social calendar!

GG’s Love of Animals….

We have extended our repertoire of animals – GG still loves her daily Guinea Pig cuddles and is as excited as the day we first had them. The addition of an outdoor cat has had limited impact, however the 2 puppies we bought home in November have enhanced GG’s life beyond all of our expectations. There is no longer a fight over getting dressed in the morning as she is so keen to make it downstairs to see the ‘woofs’. The smile on her face as they welcome her makes all of the extra work worthwhile.

On the Health Front…

Medically 2017 was a relatively stable year, discharged from cardiology, better results from the eye tests, only a couple of UTIs and a subsequent scan showing no significant issues. Appointments with many other teams but none too worrying. Most of all GG’s epilepsy has improved – it is still there and we continue to sleep with one eye on her video monitor – however we have even removed one of her medications with no impact. We could not be more delighted and we hope we will see an improvement in concentration and behaviours as a result.

GG’s Major Achievements…

In addition to taking major changes in her stride throughout the year, in the last 2 months of 2017, GG had her art work displayed at a local show, coped with going on stage to receive donations on behalf of her holiday club, and most importantly leapt an astonishing 1 year and 4 months forward on the assessment of the level of her understanding. GG has also started to sing which delights her and all those around her. There is no doubt that 2017 was GG’s best year yet.

As we move into 2018….

We are so excited about what GG can achieve. Our focus on improving some of the challenging behaviours will continue. The EHCP transfer will no doubt prove a challenge, and just maybe 2018 will the year of the diagnosis for our gorgeous SWAN as we await results from the 100,000 Genomes study. Let’s hope 2018 will prove to be even better.