Earlier this week, a good friend of mine over at Complicated Gorgeousness wrote a marvellous blog post about the realities of motherhood and its ability to blow an enormous hole through what you previously recognised as a social life and change your perception of and relations to others unfathomably. Inspired by this popular cartoon that has been doing the rounds on Facebook, many of us SWAN mums have been nodding quietly in agreement that even the relationships you cherish and want to foster can end up a little dusty when you have a child with additional needs.

I’ve wanted to write about this particular subject for a while but every time I sat in front of the keyboard I found myself feeling like I was just making excuses for being a part-time friend and an absent family member, yo-yo-ing in and out of social groups and relationships dependent on what particular new surprise or admin marathon has been on the Orange Agenda. Nobody really wants to know the minutiae of my day, no matter how different it might look to many. The hours of therapy, phone calls chasing tests and appointments, coaxing a small boy to learn how to eat, talk and stand, driving miles in all directions to attend said tests and appointments, and the weeks spent in a mind fog dealing with the emotional fall out of new information or educated speculation about Orange. In truth it just sounds like whining, self-absorbed claptrap. The sort of thing that appears on a Facebook status stealth boast imparting all the details of one’s day thus ensuring nobody can think they could possibly have been as busy as you.

Plenty of people have busy lives and while Orange brings with him an unpredictable pick n’ mix of extra challenges, it didn’t feel right to stick my hand up in the air that bit higher and declare myself the busiest of them all, because it just wouldn’t be true and would have left me looking like a prize twit.

When I saw the frazzled mother cartoon doing the rounds, I realised just what it is that leaves me often unable to reply to a text message within a fortnight of receipt, or look at the mail until it has been sitting, wedged in at jaunty angles in the post rack, for at least a month. Orange, with all his Great Unknowns, is like having a newborn for the first time, every day of your life. If you are a parent of small children, the memory won’t be too fuzzy-edged or rose-tinted just yet, and you will completely get where this is going…

Remember those first eye-blurringly, scared-I-might-break-him, exhausting early weeks when you had your first child? The magnitude of emotion and sudden weight of responsibility? The minute-by-minute challenge of having to learn on the job to care for a tiny, vulnerable person who can’t tell you in a conventional manner what they need? The never ending stream of missed phone calls, unanswered texts and Christmas cards that never quite made it to the post box because you were all consumed with managing a living, breathing human who was entirely dependent on you day and night?

Never mind the sleep-deprivation and wondering if you’d ever be able to pee in peace again without a small person attached to you or screaming relentlessly in the next room, you were so enwrapped in the cocoon of new parenthood that there just wasn’t quite space yet in your brain to accommodate all the other aspects of your life? But then gradually that tiny person began to develop a little independence, you settled in to your new stride in your parenting role and piece by piece, you found there was room in your timetable for your friends, family and pastimes after all, and even a little time to squeeze in some new ones too? You could plan a big night out, read a book, work out, have house guests, paint your nails even. All things that were unthinkable while in the throes of very early parenthood.

Only caring for Orange, as rewarding and entertaining as it often is, feels very much like being stuck permanently in that no man’s land, new parent vacuum where really not much gets done other than making sure the baby is clean and fed. The vacuum has outstayed its welcome, somewhat. Not only is he two now, but he’s also my second child. I should be taking this one in my stride, multi-tasking like a demon, managing to climb ever higher up the career ladder, keeping a perfectly turned out and coordinated home and wardrobe, remembering social niceties like thank you letters, flowers on birthdays and regular phone calls to loved ones, breezing through ever more jam packed schedules of extra-curricular activities and play dates, springing out of bed at 6 to throw out 100 press ups and bake muffins all before the kids wake, right?

Instead we are in permanent survival mode. Every week brings with it a new therapy task, the development of a new and unwelcome sensory issue (eating was the latest one and boy was that dull), an ever changing and complicated list of symptoms and things to be tested. Things that have been ruled out are back on the table, new possible diagnoses floating about in an unpromising manner but necessitating many hours spent researching, learning, understanding and testing out how they might feel when applied to our lives, to Orange.

And as Orange gets older, bigger issues present themselves. Issues that don’t have an answer yet and that bring with them that same vast blanket of responsibility and consciousness of vulnerability that a first newborn imparts. The latest and greatest on my mental worry list are schooling (the statementing process is a Night. Mare. and bureaucracy a source of huge angst), diagnostic testing (there are frightening and degenerative conditions our geneticist needs to rule out), and the will-he/won’t he see-saw of wondering what Orange’s future mobility and cognitive abilities will be that have the potential to entirely change the landscape of our family future.

The constant merry-go-round of appointments also fulfils its part in ensuring we never quite break out of survival mode. This week alone, Orange has six appointments which not only eats up significant amounts of time just attending and getting there and back, but the preparation of questions and information beforehand, and the comedown afterwards means there is often little time, brain space or emotional capacity left to deal with anything else, no matter how welcome a distraction it might be. On top of an unprecedented period of intensity at work for Mr Mavis, and much new and exciting work being hurled in my general direction, we’ve warped into survival mode overload for a while.

I’d like to extend an enormous thank you and a huge hug to the lovely friends and family who continue to make allowances on our behalf by including us and keeping in contact, offering help, support, fun and love even when we’ve failed miserably to do the same in return.

You know when you had been walking a newborn around the house for what seemed like days on end, with no time to shower or cook a meal, and a thoughtful friend shows up with a home-cooked lasagne and takes the baby for half an hour while you wash your hair? And how grateful you were? That’s pretty much it. Right now, there is an ever growing list of fairy godmothers in our lives proving themselves to be lifesavers, taking The Beep of an afternoon while we appointment juggle or hoof it to hospital with Orange, mowing the lawn, making me go for a swim in the sea and relax for half an hour when I was finding excuses not to, pouring wine, and helping out with Orange’s therapies when I’m all out of puff to coax, cheerlead, sing and praise.

It is now ten past midnight and bed is beckoning, so I will leave you with a little picture of the boy himself enjoying some of the glorious sunshine down here on the south coast of Cornwall. Here he is, chilling on the beach this afternoon after being a very good boy at appointment number five this week, visiting the specialist dentist in Truro. He flirted with her, of course

As published: http://orangethisway.co.uk

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