WHAT TO WRITE ? WHAT TO WRITE ?

When Oliver was born, at 29 weeks gestation, he was ventilated, on minimum pressure with air, no extra oxygen, for three days. Dreadful days really. I'm still not able to write freely about them. On the third day he struggled to rip the tube from his airway, despite being sedated. In hindsight he probably would have managed without being ventilated. The Registrar wouldn't take the decision to take him off the ventilator, because of his prematurity, and the consultants were at a neonatology conference. When they did remove the tube it was "starting to block", whatever that means. The struggle to pull it out would have raised his blood pressure enough to rupture the very delicate, at that stage of development, blood vessels in his brain.
These things happened. I doubt we'd be able to prove it. Nothing changes the now we live with.
We were told that he'd had a grade four [the worst grade of 1-4] bleed. That he'd never relate to us or move independantly.
How did we respond ? Well, I should put this in context. I had refused all testing. I wasn't prepared to abort an ''imperfect'' child. I am far from perfect. What right do I have to expect that of our child. As it happens we think Oliver is perfect !
We wept hot and desperate tears. Not so much for us, but for our much wanted and beloved chick. Tears for a lost future. Unfullfilled hopes and dreams.Then we talked. By the next morning we were past the shock and pain we initially felt. Oliver was our son and we resolved to give him the best life we could. We hit the ground running ! We'd already bonded with him before his arrival, partly as a result of regular scans, and simply completed the process. We held him, gave kangaroo care, sang to him, talked to him and fed him exclusively on breast milk. And read books on neuroplasticty ! When in doubt read a book.
Oliver is disabled. Much more so than he looks. More than that, though, Oliver is a joy. Even when naughty and cheeky. Maybe more so then. He is able to be those things ! He has such a strong personality and character that his difficulties and problems seem to fade.
But still...life is hard. The constant pushing to get what he needs and make sure he is treated well. Even with the support and help of his therapists [we've been so lucky there] and the education authority, particularly the SEN department, it is a slog. A never ending job. Getting what he needs and being on top of every aspect of his care, dealing with so many people, not all of whom are pleasant or helpful. Being a pain in the ass on his behalf. I find it all so hard sometimes. I have reclusive tendancies [no, really !], and would never fight so hard on my own behalf. It is hard to feel embattled. To know that people hate me because I stand up for my son.
So, disability, for me, represents struggle. That includes my own !
It's the hassle of having to deal with the floor to floor lift engineers over and over again. They never give a time, just a day, when they'll turn up, to stomp about the house in a surly and patronising manner. And why is it they always have to use the loo ? Even when they're only here for ten minutes. Do they have a score chart on the office wall ? Then there's the new bathroom hoist, unusable until we get the sling, that has distorted the joists in the loft in the installation.
It's the cost of the pull-up pants I buy for Oliver's dignity and self esteem. The health authority would provide huge, green plastic covered nappies. NAPPIES ! I couldn't do that to him. We're lucky that we are able to budget for the £130.00 a month for those [that's with tax relief !].
The fact that I've just renewed his speech aid insurance, £300.00 for the year, and now have to pay £370.00 for a year's extended warranty.
The difficulty of finding clothes with a relaxed enough fit for sitting in a wheelchair and dressing a child with stiff arms and legs, who does his best to help. Boden sell fantastic shorts for summer, for those who need to know. We have to buy the 11 year size to get the depth in seat and baggy waist fit needed for wheelchair comfort. They protect the vulnerable knees, yet are airy and baggy. And cotton. And not cheap ! Their tops are nice and loose too. Long sleeves have to stretch wide enough to get our hands in as well, for ease of dressing.
We can't use most public transport. Can't get into so many places. Get stuck on the opposite side of the road from school, waiting for one of the many thoughtless parents to move their car from a crossing point or unblock a pavement. And then tstruggle to get the wheelchair over the broken paviours they leave behind.
Do you get the picture ?
It's the daily struggle with the small details of everyday life. The obstacles and restrictions you have to by-pass or struggle over. Just to live day to day. Add to that the ignorance and lack of empathy of the vast majority of people. Disability is hard work.
I'm going to selfishly add here that disability, for me, also means restricted movement and screamingly painful joints. Spending most of the day in pain, which occassionally quietens to discomfort. The lack of seating everywhere ! Shops, streets, parks, museums, galleries, just about everywhere. Some of us need to rest our weary joints, you know !

Yet, life is full of laughter, love and fun. The pleasure of seeing our boy growing fast, full of life and vitality.
I worry about his future, our long term ability to carry the load, both real and metaphorical. About his ability to deal with the ''work'' of being disabled when he's older.
Mostly, I think we're very lucky.