The dastardly Disney store….

I’ll come clean straight off here – I’m not entirely sure why I am sat on the lap top here blogging or quite what will spill forth once I have started writing because at this very moment, I’m fudging, filling, procrastinating…call it what you will but anything right now to take my mind off the morning.

The husband and I are in London and we have left most of the tribe at home with my long-suffering mother in law to endure enjoy half term. I take my hat off to her for stepping up (being coerced) into helping us out. After all, It’s no mean feat to take care of 3 strapping boys who between them have been hatching all sorts of wily plans which no doubt involve copious amounts of cellotape, farting and junk modelling. To confess, the junk modelling is largely my fault having saved up all our recycling over the last 10 days but many a happy holiday has been spent gluing and sticking cereal boxes and kitchen towel rolls together a la Blue Peter stylee and many a wonderous creation/sculpture/robot has ensued.

I am not totally evil. In recognition of my MIL’s needs and sanity, I have left her a bottle of sherry chilling in the fridge and 2 bottles of wine plus the extra special coffee, such is my admiration for her at this most difficult of times. If the house is still standing when we return and no trips to A&E have been involved, you know she’s a keeper.

Anyway, I must get to the point of the wittering. You see tomorrow is D-Day or rather OPERATION DAY.  Minx’s surgery has not so much crept up on us but stolen stealthily from the shadows over the last few weeks. I’m sure you know the feeling: you wake up in the morning and for the first 3 seconds or so, you are oblivious; then something slowly dawns on you that all is not quite right and before you know it, reality has kicked in and given you a healthy dose of not rose-tinted glasses but decidedly shady ones.

I’m torn. We have already binned surgery off twice before. Once because on discussion with the surgeon, we felt we had more time to play with and the second time because it coincided with leaving Jersey and starting new plans “oop north.” The surgeon agreed back in May that we could stretch things out and Minx would go on the list as and when required.

Minx has had her gastrostomy (feeding tube for fluids, high calorie milk and medications) for coming up 4 years. It’s now very high on her ribs and has been causing pain and discomfort which has become steadily worse over the last 18 months. Now we have extra complications because her stomach/bowel have for some reason decided to jump in on the act and for the last couple of months she has been in more and more pain.  Added to that, the surgery can’t be done laparoscopically so will involve an open procedure as well as endoscopy and biopsy, it’s not quite so run of the mill.

So now, I’m second guessing myself. Would it have been better to have just got it done originally as planned? Would she be in less pain, less tired, less troublesome or would we still have ended up at the point we are now where there are tears and tummy aches every day and leaving myself and hubby as parents feeling very helpless and out of our depths?

I can’t help but think I’m a Mum, I’m supposed to know all the answers, dispel the hurts away with magic kisses and make everything OK but I can’t, so here we are. Like many of my special need parent friends,I have to trust someone else to look out for our littlest and find the answers; to do their best to “fix her” as much as they can and pray with all that I have  that all goes well.

The Minx is fairly stoic it has to be said. Over the last 5 1/2 years she has been through tests and procedures that would have many an adult snuffling into their corn flakes and putting the do not disturb sign firmly on the door. Nonetheless, it’s very hard to hear your child ask “When will they hurt me? Will there be needles? I’m a bit worried” etc as the conversation has largely gone since we started pre-operative procedures on Friday.

She is wise beyond her years in many ways. Perhaps most adorably in her powers of persuasion and bribery. Rightly or wrongly over the years, it has become tradition to coincide trips to hospital for procedures/tests and ops with a trip to the Disney store. Not just the piddly one in Covent Garden you understand. Oh no, this girl, knows where it’s at and only the one on Oxford Street will do. She is most determined on this point.

So despite having made a mad dash across to York in post school run/work traffic and trained it down on Friday to London, having to be on the ward for tests at 2pm, plus squeeze in medications, pit stops and lunch, I found myself hot footing it out of Kings Cross station towards the Underground, Oyster card at the ready in my sticky mits. Of course best laid plans and all that, there was nothing left on the card so frantic queuing to load more dosh and small, persistent child, imploring me to “come on Mummy!” we hustled sub platform and crammed ourselves sardine like on to the tube.

Oh Londoners, how do you love me with my special needs push-chair, backpack of medications, handbag and dithering sense of I sort of know where I’m going and have enough knowledge to be dangerous but not quite secure enough in my decision to adopt the eyes down, knee crashing, feet running over devastation of the truly London initiated. To be fair, some poor man did take pity on me at Oxford St, Victoria line and help me lift goods, chattels, Minx et al up the steps but I largely think that was to stop me causing further chaos and backing up of traffic than for any good Samaritan reasons. Whatever his motive, I was very glad for the help – mental note to self – never tackle the underground on a Friday…or at least only use stations with disabled access – no matter that they do not go anywhere near where I actually want to go!!

We arrived at The Disney Store to be greeted by the very happy, bubbly “Guest Relations” crew and I could feel the quiver of my credit card in its little plastic wallet wondering about the hammering it was about to receive. Thank goodness for signs all over the store informing us that a mere 2 pieces of Frozen merchandise could be purchased per guest. Nevertheless, Minx was faced with a smorgasbord of delights at every foot step and only by some hearty negotiating and me tugging anxiously at her coat tails did we leave the store in time to catch the bus, hospital bound, one (over priced) Elsa doll in hand and beaming face of Minx making it all worthwhile.

Fast forward through nasty blood tests involving 3 needle jabs, much wailing and feet flailing (the nurse was heard to mutter that for a child with a neuromuscular condition and after having received a patent shod foot in the head, that she was surprisingly strong) Minx blubbed that as she had been extra-specially brave, she felt another trip to the Disney store was in order! I kid you not – the child is a genius – she knows how to hit a mum when she’s down.  I was saved from dealing with this request only because time was marching on and we had a train to catch back home again.

But now Sunday has rolled around and we have a date with Puffin ward at 7am. She’s had her bath, we have plaited her hair neatly for the morning and she, her special comforter “Bobbins” and Elsa doll are tucked up peacefully in bed, sleeping the sleep of the innocent and dreaming the dreams of the little girls.

If I could make it all better with a trip to the Disney store, I know I would be banging on their doors at 9am tomorrow but instead I will be holding my little girl tightly and putting on my brave face. I figure it’s the least I can do because if she can get through this and have spent most of this evening, laughing and giggling, then tomorrow I get to be the strong one who does the reassuring and smiling.  She’s excited about the chocolate flavour sleepy gas (I kid you not) and talking about what films she will watch, what magazines she will colour when she’s back on the ward. She’s amazing and I’m just more than a bit in awe. You know what? I probably will get talked into another trip to *that* shop.

See you on the other side of surgery…


Jelly tot consuming Mother of 4 kids, 1 cat, 2 dogs. Wife/leader in chief of our tribe. Autistic & medically complex kids keeping us entertained, on our toes & never bored...lover of all things sparkly, handbags & shoes. Proud to be a “difficult parent” in the world of SEND

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