The arrival of a new baby in any house is going to mean an increase of visitors, from well wishers to doting grandparents and we experienced nothing less when Toby came onto the scene, what is different that other families is that the influx of visitors to the house just seems to keep in growing.
This isn’t a whinge or a rant as we’re exceptionally grateful for every minute of time we get to help with Toby however as relatively private people who like our own space it can be difficult to accept that your house is no longer yours.
We’re very fortunate that both my parents and Kim’s mum moved down to be closer to us and Toby over a year ago, they’ve all been incredibly helpful at short notice to help us with emergency dashes into hospital or general ‘looking after’ duties. The downside for them is that they never get to be ‘proper’ grandparents as it’s just not fair to leave them on their own with Toby, the responsibility is too much, especially now that his breathing regularly stops during seizures administering CPR is pushing the boundaries of ‘normal’ babysitting.
This results in one of us always been in the house as well as them just in case something happens, usually this works out fine as I’ll be working in the study and so available but not hands on however there is always the sound of playtime to let you know someone else is in the house.
On top of our parents we have ‘Respite Ruth’ from the Complex Needs team once (or if we’re lucky, twice) a week for a few hours to give us some time off which is great, Ruth is ace with Toby and he loves her to bits so we’re very lucky however it’s the same arrangement, she’s not allowed to administer Toby’s rescue medication so one of us has to be around in the house. Often this means Kim can do some cooking, gardening, have a lie down or relax in a bath which is lovely, but it’s not quite the same as she’s always got an ear out in case Toby has a seizure and Ruth needs support.
Via Social Services we employ ‘Carer Claire’ for three hours a week in a similar capacity to Ruth, again Toby loves spending time with her but we’re in exactly the same situation that we don’t feel we can leave her to deal with all the complexities Toby may present.
We’re potentially getting some more respite care that will mean we can leave the house as there will be two trained nurses here for those ‘what if’ moments, that’s great however it will take us, and them, months to build up the rapport and trust to leave Toby with them. That’s months of more people in the house, possibly overnight as we sleep.
As well as the respite carer’s we also get lots of input for Toby, from ‘Paula Portage’ to ‘Language Louse’ (I’m not making these up, everyone is alliterative) or ‘Social worker Sue’ and occasionally physio’s.
On any one day we can have 3-4 people in the house with us, it can be exhausting just making the tea and coffee but the big thing is the lack of privacy, sometimes it would be lovely to just sit, in peace with no sound in the house at all. With Toby, that’s wishful thinking!