You don’t have to be crazy to live here…………….

I remember being at a friend’s house when I was growing up and seeing this cutesy sign in the kitchen: “You don’t have to be crazy to live here…but it helps.”  As I have aged, (I would use the word matured but I know I’m not kidding anyone) I realise that the adage “many a true word is said in jest” is very true and the above blog title, whilst kitsch, pretty much sums up our family to a tee!

Those of you with kids will have been enduring enjoying the summer holidays for the last few weeks and depending on where you live in the country, or indeed even further afield, you may already be counting down a matter of days till your offspring return to those hallowed portals, also known as SCHOOL – unless of course you are a teacher as well as a parent or work in the educational establishment generally, in which case I salute you and offer up condolences; you have never escaped the  masses of children, even though they may be your own! Nonetheless, in the north, we are only halfway through and my nerves are slightly frayed.

I’m going to confess that despite probable appearances to the contrary, I am not a “natural” at this mothering thing – 4 kids in – yeah right, who’s she trying to kid I can hear you muttering? However, I have days, (many of them!) where I lack confidence in my own abilities to parent and feel like a terrible human being; where I am bored of going to the park, where if I see another junk modelling creation, I might be tempted to gnaw off my own arm, where actually, I just want to be ALONE  – even if it’s for only the precious few minutes I’m allotted a bathroom break – “MUuuuum, what ya doing in there?! is a frequent cry in the milliseconds I’m confined to the sanctity of the loo and yet they still choose that precise moment to fight/need an app/wonder about how to make nuclear fusion ….I’m often tempted to ask what it is they think I’m doing in there but also have to stifle the yell “I’m making nuclear fusion of my own!!”….sorry TMI?

Each day might find me alternately filled with joy and dread, depending on the time, especially if it’s pre first cup of coffee in the morning or too early for a glass of wine in the evening. On the one hand, there is no getting up hideously early, preparing lunch boxes or ironing umpteen shirts for school. There are the genuine belly laughter inducing moments of spending time with the clan, their often hilarious ramblings (would you rather be eaten by a pack of hungry lions or pecked to death by hens being the types of high brow questions I face on a daily basis) and, although I do say it myself, they are in the main, polite, well-mannered and fun to be around.

On the other, there are the regular, mutinous cries of “I’m bored” or the inevitable fighting and having kids ranging from 6 to 15, it can be difficult to find something that everyone enjoys, that doesn’t cost the earth and result in me driving back and forwards to 4 different places (or more!) during the course of the day. Not to mention the washing actually increases ten-fold since child number 3 is generally incapable of making it through a morning without spilling/dropping or breaking something either on him or someone else and children one and two like to go kayaking in the river, leaving in their wake a trail of discarded pj’s, clothes worn for a millisecond, then wet swim things to finally put on yet more clothing because they can’t be bothered to put the first lot away.

I’m sure there are plenty of you reading this who feel ever so slightly miffed at me: Who is she to moan, when I have to juggle a job and child care and holidays and life in general???? She doesn’t know she’s born! Well having done this both ways, i.e. been a working parent and stay at home parent, I can assure you there is no easy answer and it shouldn’t be a competition about who has it harder. Each situation has its own difficulties and merits and I wouldn’t dream of turning this into some kind of competition but I will raise a glass to parents (& grandparents and carers in general) who battle their way through school hols be that in gainful employment or otherwise.

I think this particular summer break is slightly more fraught than most. Since hubby is a pilot working for an airline that largely       depends on short-haul sunshine destinations as their bread and butter, the months between April and September constitute their busiest period and so being still relatively new to the delights of North Yorks, I am often fending for myself. Hubby also works shifts, some of which start hideously early – 4 am get ups are not uncommon and late’s can often see a finish of 2 or 3 in the morning, especially if the French have gone on strike/extended lunch break!! Weekends together are a rare and coveted luxury.

When you add into the mix, a medically complex child and all that that entails, even the best laid plans can go awry. Minx has been experiencing increased episodes of pain in relation to her stomach and bowel again. She’s already on some pretty hard-core medication to try to block pain signals but at least 3 or 4 times a weeks experiences break through episodes of significant pain and discomfort.

As a parent, seeing your child in pain and unhappy is one of the hardest things not to be able to “fix.” I’m used to being able to dole out over the counter medications and some gentle hugs and TLC; reassured in the knowledge that whatever ails my typical kids, will be over in the short-term and forgotten in the near future. But with the Minx, Calpol and kisses don’t cut it and we know from numerous conversations with her gastro team, that we are at best firefighting her issues, not really getting to the bottom of them, no pun intended.

Fast forwarding through the never-ending cycle of phone calls with registrars, repeating myself over and over, trialling this, tweaking that and the other with no respite from the pain, Amelia’s Great Ormond Street consultant decided that she needed an emergency appointment….on the second day of the summer hols with less than a weeks notice…..

With hubby already rostered to work and no one in the immediate vicinity to call on for a helping hand (my lovely neighbour was away and our respite lady was already booked up) I was out on a limb.  It’s hard enough to find cover for one other child in similar circumstances, but 3? Particularly at different ages and stages….hmmnn….

The situation was further complicated by having to take a 9:15am train out of Knaresborough and not being able to return until late evening due to appointment times, connections and avoiding the eye watering train fares that comes with being within a 2 hour commute of London. Martin being on a late airport standby shift meant he would only be home with the children till 12 noon and then not scheduled to finish till 8pm – and that was assuming he didn’t get called out and sent to Timbuctoo or similar. In that scenario, it was anyone’s guess what time he could be home!

Not knowing what to do for the best, I decided to throw myself on the mercy of a newly made friend who had, after a few vinos, been coerced offered to help out if ever she could. Little did she know I would be calling on her quite so soon!!. This lovely lady has had more than her fair share of trials and tribulations since the year began so I was anxious not to intrude more than necessary but she gallantly stepped up to the plate offering to have our youngest son to sleep over night and keep an eye out on the older 2 and even to have them too if it became necessary.

Fortunately this didn’t prove necessary as Martin made it back without issue and the oldest boys actually enjoyed being allowed to travel into Leeds by train for the afternoon and spend some time gadding about as teenage boys do. Nonetheless it didn’t stop me having a “mum-worry” and I insisted on hourly texts to let me know they were ok. Receiving “we are still alive”, whilst not particularly detailed was relatively reassuring!

Upon returning home and to save cooking (& let’s be honest, my kitchen) they happily stabbed a ready-made microwave meal with a fork and were left with only the plates to pop in the dishwasher. They now think that adults have it made and that I in particular make far too much of this parenting malarkey but that’s another story!

The day down in London was a long one. As I guess I should be used to by now with our little Minx, whilst the registrar and consultant were fantastic, going through a detailed history from birth to present day and reviewing what we do know so far, the appointment threw up far more questions than it answered. Suffice it so say, we have no particular plan in place at this time to cope with the pain, other than for the time being to keep on doing what we are but it has led to more tests being organised, more discussions to be had with other specialists in her team and more referrals to be made.  I am both grateful and resigned in equal measures.

On a positive note, my parents had asked us earlier in the summer if we would like to come back to Jersey for a few weeks and then generously stumped up the not inconsiderable fare for us to take the ferry back. We were entertained royally  and my waist line bares testament to the feasts we enjoyed and the free-flowing alcohol. In fact, my mother was so horrified that I had left half a glass of prosecco one night that I joked I would put it in the fridge and have it with breakfast…she thought I was serious and duly proffered it over the pain chocolat and fruit platter fit for royalty the next day.

We had a fantastic, unheard of, almost 2 weeks together, although I must confess that sleeping in my child-hood bedroom was a bizarre experience. Thank goodness it’s been redecorated since I left and now has a double bed in or that could have been interesting….and awkward.

Mum and Dad had bought inflatable mattresses for the ungrateful youngest off-spring who despite this proceeded to sleep on the floor at regular intervals and also for the elder boys who slept in a tent on Dad’s beloved lawn. I’m hoping he recovers from the trauma of seeing the remaining unsightly day-glo green patches soon, despite our best efforts to move said tent every 3 days to prevent damage to his precious (think father with his first-born) vista.

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My mother needed regular reassurance that off loading the boys to the great outdoors really wasn’t something that they are going to need years of therapy to get over and that actually this was something FUN that they would quite happily have paid to do!! Their tent was fabulous, air beds with all-weather sleeping bags, power in the garden thanks to an outdoor supply so the all important gadgets could be played with and charged over night, an arc light that could have lit up Wembley stadium and access to indoor plumbing as well as the fridge as and when required…even though I was tempted to lock the back door……

We were largely blessed with good weather and embraced our status of tourists, even visiting the beach when it was dull, over cast and threatening to rain (although very warm) something I definitely would not have entertained if we were still living back on the rock (affectionate term for Jersey before anyone thinks I’m being insulting.)

We caught up with family and friends, rock-pooled, went in the sea (ok I confess to only making it to my knees but that’s pretty good for me) played in the fountains (kids, not me, although I was sorely tempted!) went to an adventure park and even had a family day trip to France.

All the while, the Minx’s pain issues cast their shadow but despite and in spite of this, she did her level best to enjoy herself and so did we. I think what I did realise however and quite starkly on this trip, is that as she gets older, her difficulties highlight the differences between her and her typically developing peers of the same age.

The adventure park was a particular case in point. As I have said in previous posts, my blog is not a pity party and we are incredibly lucky that the Minx can walk and jump and swing and do all sorts of things that many of our other special need children’s friends cannot. But all these things come at a price: increased pain, increased fatigue, epic emotional meltdowns, reduced gut/bowel function, shaking and the need to sleep like a toddler in the middle of the day.

We rocked up to one particular attraction with an assault-course style park – climbing nets, rope swings, tires, monkey bars and such likes. All around us were children of her age group, even younger, tackling each obstacle with confidence, speed and agility, no second thought for how they would navigate between each piece of kit or cares as to whether they even could.

Amelia arrived in her wheel-chair. We have learnt that conserving energy where she can is the best way to ensure she gets to join in to the best of her abilities and to preserve her precious stamina levels for all things fun. Of course this raised the odd eye-brow or two – watch the cute little girl roll up in a chair….witness said girl jump out and run to the nearest climbing frame!!  We have grown used to the stares over the last year or so but it’s still quite fun to watch at times 🙂

However, if you looked closer and watched her determinedly trying to find a safe, foothold or hand-hold. Watched her stretching her limbs to her utmost, the shaking and jittering of her muscles with the effort and repeated actions diminishing her ability to continue. Watched her being unable to hold her balance any longer through the sheer effort of holding herself upright. At that point, everyone could see that this was a feat of courage and endurance on her part.

Over and over she attempted to use the rope swing to propel herself from one side of a raised platform to the other. Other children patiently queuing behind her would hurtle effortlessly during their turn and she watched, absorbed and drank it all in, trying her best to emulate them. I think we must have stood there for about 30 minutes with her trying on and off and each time it came to her turn, she would drop like a stone on the floor below, neither her arm muscles or core body seeming strong enough to support her. But persevere she did and inelegant and precarious through it was, she eventually achieved her goal and reached the other side. Her smile was palpable and we too beamed and clapped and did a happy jig to celebrate.  IMG_6667

Bit moments like that are bittersweet because later in the day she conked out exhausted and her pain levels left her crying and miserable. How do you explain to a 6-year-old who wants to be just like her peers that every action has a knock on effect? Every achievement a potential downside later? Generally we don’t. We try to talk about choices and use key phrases – anyone who has ever said “are you tired?” to a whiny child knows the answer you will get and the futility of such a conversation. Minx has been known to be muttering “I’m not tired and I don’t need to go to bed” as her head hits the pillows. So we ask if her muscles are tired or need a break and sometimes, just sometimes, she will admit to this.

Anyway, not to continue on a downer, we had a fabulous, much-needed break and were largely blessed with glorious sunshine that reminded us all why Jersey is such a beautiful place to live. I would say that it re-charged the batteries but we rushed around so much and tried our hardest to catch up with so many people, it feels like we would do with a holiday to get over the holiday!

I have to confess to having some worries how the children would cope when we came to leave, having only moved to the UK a year ago. To their credit, whilst there were some tears shed (and plenty of them were mine) they were all pragmatic in their approach to returning home – a year on and it still feels funny to now say home is in Knaresborough.

On the subject of home, I haven’t yet mentioned our BIG news: We move house!!! In 2 weeks!!!! and yes hubby is working every single day and yes I am packing AGAIN……with 4 kids….2 cats…school holidays…..Like I said at the start, you don’t have to be crazy to live here…..

So praying to all the deities/moomins/magic runes/insert appropriate lucky charm that you believe in, wish us luck with the move and hopefully the next blog will be written from our new house……

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