My daughter was nearly 4 when Nate was born. Larger than life. Inquisitive and hilarious. Nate’s first summer was spent in SCBU and there was always this nagging feeling I needed to claw that time back somehow. My children HAD to bond and we needed to start our journey as a family, making memories along the way. Nate was small and frail for the subsequent summers and we worried about venturing very far away from hospitals who knew him well (as he became ill very quickly), but we were determined to go out and about as much as possible for our daughter, and our own sanity. Around this time Nate continued to spend so much of his life in hospital that we attempted to squeeze in as much family time as possible while he was home and relatively well. Even while on oxygen it was fairly easy at that point to throw Nate in his car seat and be out for the whole day without any issues.
Now, aged 8, and around 30kg, just leaving the house with Nate feels like a huge accomplishment, some sort of cardiac workout in itself moving him to his wheelchair and then clamping it into the car. We need to plan for being able to change/ toilet him therefore must either visit somewhere with a “changing places” facility i.e a bench and hoist, or be home within a few hours. Just like any child my son needs to be fed. The difference being I need to either take a blended meal with us or find some sort of baby food while out, although the low calories in this food make it less than ideal. We need to remember an extension set, meds, syringes and oxygen. A change of clothes. Pads and wipes. So in my head there needs to be an overwhelming benefit (for at least one of us) to justify the trip itself.
This year I decided that unless Nate was feeling tip top it really wasn’t worth all the effort and planning. Nate has slept through expensive trips too many times, and it grates on me to pay entry into places where there’s nothing appropriate for him to do.
The big lad.
Venturing out as a wheelchair user ( or with one in our case) in this country can be pretty shitty. Nate uses all of his DLA mobility money to lease a wheelchair accessible vehicle or WAV ( note to readers- not a free car!). We are lucky in that both myself and Michael drive, but the lack of disabled spaces, and arseholes parking in them can be problematic. Toileting on days out and long drives is a huge issue. Yes the number of changing places toilets is increasing, but it’s doing so slowly and the majority of service stations and visitor attractions remain without one. At least we can get there I suppose... if you need to use public transport the situation can be much much worse. In our experience bus drivers are often unwilling to ask bus wanker passengers to move from disabled seats and will rather not stop than address the issue and let you on. I was very impressed in London a few years ago when a bus driver got off to explain to us he already had a wheelchair on the bus and had no more room, but that he had contacted the bus behind, they definitely had room, and would only be a few minutes. I’d like to think that level of consideration and/ or training is standard, but I know it probably isn’t.
I’m still traumatised from my one return bus journey where I nearly tipped Nate’s chair over getting off the bus as the driver refused to put the ramp down, and that was after me having to ask, and then tell some older people to move a few seats down so I could get his chair where it needed to be. Teacher/ Mam “death stare” (as my daughter calls it) comes in handy.
Railway stations are opening changing places toilets too in a nod to inclusion, but the trains themselves remain a stressful experience requiring a ramp to board only to find wheelchair areas packed full of luggage or passengers refusing to move from allocated seats for those with disabilities. Special assistance ( who are armed with the ramps to get you onto trains) often fail to turn up even when booked well in advance. I can’t log on to twitter without reading on a daily basis the upsetting experiences of people with reduced mobility on our railways. Aeroplanes remain inaccessible to the wheelchairs themselves and to fly you are required to leave your custom chair at the door and hope the baggage handling companies don’t lose or damage it, and remember that you actually need it to disembark. And make sure you don’t need the toilet!
So this summer Nate started the holidays quietly, sleeping most of the day due to the heat. When the rains came my little Nate perked up and had some better days full of cheek, but it’s incredibly tricky to find things to do that suit a stroppy pre teen and a cheeky small boy who happens to have PMLD and can’t see. So some days I didn’t try. It’s not that we did nothing. We did. But I may or may not have been found around lunch time braless and unwashed on occasion. I even wore no make up *gasp* and left the house, which is massive for someone so pale she looks dug up. Seriously there’s healthier looking vampires ( and I don’t mean those sparkly twats from Twilight). “Fuck it” I thought, I’m not in competition with anyone, and with the overnight care situation remaining unresolved finding motivation to do anything was sometimes pretty hard. BUT I/we have managed to do the following:
- binge watched OITNB
- caught up with friends
- met up with a lovely ATRX family
- binge watched Killjoys
- spent time with my nieces
- took Nate swimming
- escaped for a few days with the family
- escaped the family for a night away with Michael
- started running again
- drank wine
- got all of my daughter’s school uniform sorted at the beginning of the holiday ( I deserve a bloody huge parenting award for this, first time ever).
- read a few books ( husband threatened amazon ban, which was met by a suggested Arsenal ban, argument over)
- daughter has swam most days
- seen some lemurs
- haircuts for the kids
- played board games
- annoyed my daughter
- took the daughter to Friendsfest
- new slings for Nate
- watched my daughter in the wettest football tournament ever
That’s in addition to the usual phone calls, meetings, hospital appointments, dog walks, and work work.
And yes I’m probably more tired now than I was in July.
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