The summer holidays have really derailed my commitment to writing blogs. Despite Ben still going to nursery for two days a week though the school holidays a combination of my husband being away in June, our nanny being away for most of July, me trying to do some work, then us going on holiday for two weeks meant I was struggling to keep on top of basic tasks. And my house was a tip.
I had good intentions of writing when we were on holiday – wouldn’t it be the perfect opportunity, with all that spare time? But Ben developed a fever on Day 1 of our stay in Devon and spent a considerable amount of time vomiting (in a carpeted holiday home, hard to tell sometimes whether I was more stressed about Ben or the soft furnishings). Then his gastrostomy site got infected so he was really sore. Then we went on to Cornwall where we stayed with good friends and loads of kids so I was too busy sipping Aperol Spritz in the hot tub to be writing.
Talking of which, if Ben could talk I’m certain he would tell us the hot tub was the highlight of his holiday. He is at his calmest, stillest, most relaxed in the very hot water. I spent 45 minutes in there with him one morning. He would happily have stayed longer but I was concerned about whether he was actually being cooked and whether his fingertips would ever rehydrate.
I had purposefully reduced the amount of Ben-admin I did on holiday – which meant I spent only one morning making calls and answering emails. On our return to London, I caught up with everything and we had embarked upon all the appointments we had postponed while we were away…
We returned to London on Friday and then (these are only the Ben-based bits):
Saturday – 1hr physio at home
Sunday – 1hr physio at home
Monday – 1hr physio at home and checking fit of a new chair. Cooked, blended and froze a week’s worth of food for Ben (approx 1.5 hrs). Confirmed Ben can attend a hospital appointment for some tests. Rearranged Ben’s specialist dentist appointment so he can go to a picnic with friends from nursery later in the week. Ordered repeat prescriptions from pharmacy.
Tuesday – Opthalmology appointment at hospital. Waited in for collection of Wheelchair Accessible Vehicle we had borrowed for holiday. 1hr physio at home. Tracked down spare part for Ben’s chair which had been delivered to the wrong house.
Wednesday – new chair for Ben delivered. Met with Assistive Technology team to start loan of eyegaze computer which wouldn’t work. Met with council transport co-ordinator to complete application for Ben to get the bus to school. Packed bags and made food so Ben could stay with my parents overnight. Dropped Ben off, then deliver medications that I forgot to pack originally. Called company to arrange fitting of spare part to Ben’s chair.
Thursday – picnic at Ben’s nursery to say goodbye to other kids/parents on his penultimate day. Spoke to community nurses about Ben’s sore gastrostomy site. Rearranged some hospital tests. Caught up with Ben’s speech and language therapist and arranged to meet next week. Met with Assistive Technology team to get eyegaze computer.
Friday – Ben’s last day at nursery. Traded voicemails with Community Dietician. Collected medicines from pharmacy.
We are constantly trying to think about the balance between Ben being a small boy and being a disabled child. Other 4 year olds get to spend summer holidays playing in parks, going swimming, making cakes. Ben rarely has a day without an appointment. In this instance, he had just had two weeks of illness/recuperation/relaxation, and most of these appointments were important to ensure his ongoing comfort, development and nutrition, so I think it was okay. But it’s not fair. As his parents we have to keep reviewing whether the things we make Ben do are right, and that he isn’t missing out on too much of the fun stuff.
I often talk with friends/acquaintances about why I am not working as an architect, why I’m not employed on a permanent basis; weeks like this are why I’m based at home for now.
(P.S. In that last photo of Ben doing physio exercises, he’s watching a video on the iPad to encourage him to keep his head up. His favourite thing at the moment is an old BBC Jackanory film of Rik Mayall reading Charlie and the Chocolate Factory by Roald Dahl. He has watched it tens of times and thinks it is HILARIOUS.)