Hello there.
You could be forgiven for thinking I had fallen off the face of the planet since blog silence has been epic (fail) since my last whimsing’s about undiagnosed children’s day. A roaring success by the way, which not only raised much-needed cash but as importantly, awareness of just how many children in the UK alone are born every year and don’t have/may never get a medical diagnosis (6000 approx, just in case you needed a cheeky reminder 😉 )
Since then lots seems to have happened. We had a fabulous day at Flamingo Land (Yorkshire’s answer to Alton towers complete with zoo) meeting up with other SWAN families from near and far. Pictures galore, cuddles a plenty and despite the persistent drizzle, freezing temperatures and someone being completely inappropriately dressed for the day (I’m not saying who but in my defence, I’m still a southerner at heart and since it was vaguely sunny when I left home, I saw no reason not to wear open-toed sandals, cropped jeans and a lightweight pac-a-mac thingy instead of sk jacket, thermals and Uggs – it was almost the end of April in my defence!!)
This outing was for all the family, not just our SWANS, which was very welcome since all too often siblings of special needs children get relegated to the bottom of the pile. To be able to do something that catered for the entire family, (largely the feedback we received was of a very positive day out and I think even those with limited/no mobility enjoyed being able to see the animals if nothing else) was extra special.
Our second eldest absolutely loves theme parks and is a bit of a thrill-seeker (understatement on the word bit) – he has to climb the highest, push himself the furthest and conquer the most extreme rides. Guess who gets to accompany him on these death-defying feats? Yep, yours truly. Since Hubby has a bad back, I am generally the go to woman of choice for the vomit-inducing-space-catapaulting “fun.”
Where as once I would have been first in the queue too, I now have my sensible head on and my mental checklist runs something like this:
1) How can I back out of this without looking like a complete wuss?
2) Will my shoes/sunglasses/accessories fall of and can I back out on those grounds?….(dang it, having smaller kiddos means there’s always a handy place to store bits and bobs, especially on the wheelchair.
3) When did I last check my life insurance?
4) How long has the operator of this ride been out of school, or worse still, is this his/her weekend job???
5) When did they last check the boltey-bits/tracks/cars and if the seats themselves have ever been cleaned….I’m pretty sure that’s something unmentionable by my shoe……
6) Will I be able to walk/talk/cook dinner and function in a quasi normal fashion once I (assuming I make it off alive) get off the ride…
Pre-“flight” checks commenced, I know I won’t have the heart to back out and disappoint my son. Truth be told, I have a reputation to uphold – I am COOL – yes me, I know right?!! I am the Mum that’s ridden The Manta in SeaWorld, upside down, skimming over water with inverse G, on my own no less since my partner in crime didn’t measure up to the height requirements and he was desperate for a blow-by-blow account of the ride…I wasn’t much help actually since I largely kept my eyes shut and screamed…a lot.
I am the Mum whose ridden The Smiler with him despite his good friend and their parent backing out at the very last minute….and the theme park announcing just before we got on that they had to stop the ride as someone had “smiled too much”…..There isn’t a spinning tea-cup I haven’t conquered or a ride I have backed out of…yet.
So Flamingo Land saw much of the same and found me climbing unceremoniously on to a ride called Hero, into a moving ladder contraption which I then clung on to for dear life before a frame squashed over me and I assumed a horizontal position, about to fly. Before you get to experience this “joy” you venture up and around repeatedly, corkscrew like until you then plunge forward to the point of no return. Clinging to the handle bars, soaked to the bone and colder than a popsicle, I tried my best to convince not only myself but my dear, now 12-year-old, that I really was having FUN – after all, if you are the COOL mummy, you have a lot to live up too….I’m not sure I fooled either of us but I still retain my status and he’s already plotting for potential further visits in the future…yey.
We have had numerous hospital appointments and therapies and even a trip down to Great Ormond Street for a few days. As well as the matter of the appointments we had to attend, I got to meet up with some fellow undiagnosed parents and their children for coffee and a natter which was rather special. It’s rewarding meeting people I have gelled with in the land of Facebook and finding they are just as fabulous in real life.
The Minx in characteristic style was very brave, undergoing an MRI scan for almost 40 minutes without any sedation. Of course I got fleeced again in Disney and Build a Bear but it was a small price to pay considering there is many an adult who can’t face such noisy, claustrophobia inducing contraptions and she managed incredibly, despite shaking like a leaf.
We have had family visiting us which has been lovely as I very much miss my Jersey family and friends. It’s been especially fantastic to see my little niece who is growing bigger and cuter by the day. Face time is great but it doesn’t compare with the real thing, sticky little kisses and real high fives. Rising 2, she is a delight with her singing, dancing, bossiness (clearly a family trait….) and eating – well I have never seen a child with an appetite like it. I *may* have moved the Minx’s chair slightly further away at the table just in case my niece was tempted to take a chunk out of her too…
The ‘rents have been over and spoiled us with meals out and the several odd bottle of wine. We discovered a local gourmet pub restaurant that has us all chomping at the bit to go back and we celebrated a milestone birthday for my mother-in-law, travelling convoy style down to the Midlands to p-a-r-t-y. A good time was had by all and life generally has been rather smiley.
Sometimes I have to remind myself that with 4 kids, and 3 of those with extra needs we are not your typical family. Of course, by virtue of the fact that we have more than the 2.4 requisite children, we have accumulated more than our fair share of stares over the years. Having 3 boys and then a girl, we always get the comments “Oh you got your girl in the end then” or even from a particularly initially charming, then irritating couple in a restaurant repeatedly over the course of a meal “are all those children yours?!” (shocked and horrified in equal measure). It was amusing the first time, by the twenty-first, it had worn thin.
So when we are out and about and you factor in my little Minx in her bright pink wheelchair with flashing front castors and daisy trim wheel-covers, and then the rest of the tribe in various stages of their love/hate relationship, teenage angst clothing or army soldier get up (the 8-year-old) we can be a bit of a spectacle, hard to miss (no matter how hard you might try!) I imagine. I am *almost* immune to the odd looks.
Never is it more entertaining than when the Minx decides that she has recouped her energy, no longer needs the chair and then promptly jumps out and runs off, much to the amazement of anyone around us. I think largely society – and to be fair prior to living in the SEN world, I would have been the same – expects those in wheelchairs to be permanently so. Certainly less than able to run, jump and do kick style leg lunges at ones irritating siblings. Of course now I am one of the “initiated” and understand there are lots of children, (and therefore likely adults as well,) who need their wheelchairs some of the time and will no doubt need to have it with them just in case BUT that they could also launch out ninja style at any given moment. Nonetheless, the temptation to shout out as one set of friends did (no names mentioned but if you are reading this, you know who you are) when their son jumped up to the amazement and veritable parting of the masses “it’s a miracle!” has been strong and fought down on many an occasion. I do spend large parts of my life feeling like I am living the Lou and Andy Little Britain sketch.
One recent family outing, strolling down our beautiful lane for ice-cream brought us stares a plenty when after debating for the best part of an hour with the 12-year-old why we could not add another pet to the family menagerie, I shouted in a much louder voice than intended “Look, you can debate all the reasons why from here on to eternity but we are NOT getting a Capuchin monkey and THAT’S FINAL!!”….. This seemed to cause much merriment and chuckling from all in the vicinity and probably weeping of relief from the neighbours.
We have talked on and off for a while about getting a dog but the timing is just not quite right yet and it is certainly not something I want to enter into lightly for both the sake of the dog and the children. Despite much pleading and begging (read whining and wailing) we have resisted so far but as you can probably see from the photo accompanying this piece, (and it wasn’t my idea I hasten to add!) we do have a new addition….a little ginger and white tom cat, currently 13 weeks old, named Monty, also known as the Ginger Ninja, such are his peccadilloes for doing vertical take offs and attack manoeuvres at all hours of the day and night.
Monty has been well received by everyone in the family, apart from our already resident 4-year-old cat Tilly who treats him with apathy and disdain in equal measure. She is outraged with us for having demonstrated such weakness and shabby morals as to bring in another whipper snapper to the fold and I’m trying hard to win back into her good graces. with plenty of love, affection and treats. Matters are not helped by the fact that despite his diminutive size, Monty has the appetite of a Shire Horse and is constantly trying to steal her food so we have taken to putting her bowl on a window ledge where she has to precariously balance whilst he jumps plaintively beneath her, hoping for scraps.
In a bid to save myself from the national debt of a small country over the summer (& living in Yorkshire, I really do use that in its loosest term, it was hailing yesterday and it’s almost June!!) and living down one end of a lane that has no less than 4 difference ice-cream venues, all with an astonishingly vast array of (largely hideous) flavours, I invested in some lollipop moulds from a well-known retail establishment. In a semi smug manner I envisaged the wondrously healthy, nutritious treats I would whip up and freeze for my off-spring during these warmer months as well as saving the pounds and pence in the process.
However, judging by the utter disgust and whole-hearted rejection of us all by Tilly, I have some bridges to mend and will probably be found cramming the lolli-moulds into fishy fancies of salmon and cream slush and trout and hake creamy swirls…..I’m not sure I’ll ever convince the children to eat anything home-made on the ice-cream/slushy front again but if it secures the affections of my now slightly less flabby Tilly, then I will be a happy momma.
Until next time…..
Definitely Not The Walton's.... 