Its a long, long time since I last put pen to paper, or fingers to keys…
There’s been a lot happened in the world of Isaac, and a lot has happened in my world as ‘dad’. The rest of the tribe that share the house have also been noticeable by their presence, as always..
I’ve been away from blogging for a few reasons. Predominantly its been because i’ve been trying, with variable success, to recover from the depression that affected me so significantly the latter half of 2014. Nomatter what you write about depression some people will think you’re melodramatic or attention seeking or just can’t pull yourself together. If I say that I came very close on a few occasions to being unable to carry on, I’m only saying it to hopefully be brutally honest about how it can affect you and hopefully to maybe just show one other person that there is a way back from even the darkest, scariest moments. However, in January both Lynsey and I made a big pledge to make a new year a new start. It’s been very hard with setbacks sometimes that cause a bit of a ‘factory reset’ moment where you have to shut down and restart but overall i’m almost there. One thing that has massively helped is that I invested in a mountain bike at Christmas time and have put some miles through my legs up and down the Leeds-Liverpool canal every week since December ; the clear head space that comes from the lack of oxygen and floaty shapes in my vision is truly escapism..
Anyways, Isaac has continued to recover brilliantly from his broken leg and had the pins removed last week. Aside from an anaesthetist who whilst assessing Isaac a few minutes after arrival said ‘why the trachy? its unusual to see a trachy in a CP kid’ (reminder given that he’s called Isaac, he’s not a ‘CP kid’ by first definition, he’s a little boy. His disability does NOT define him), the day went great. Nicky and Abby the two nurses who looked after Isaac in the day case unit recovery ward were so positive, happy, enthusiastic and attentive to Isaac they should be cloned and sent to every paediatric ward!
The current time with Isaac’s care is very stressful ; combining two ‘extra’ things on top of everything else….
1. House adaptation planning (hopefully almost at the stage of confirming and starting work). There has been so much to think about, from types of bath, types of bed, how best to mount doors, where the ceiling hoist system will go, where to relocate a boiler, where the window will go, what sort of toilet and hand basin etc etc etbloodycetera. It’s been a few months of feeling like we are trying to coordinate the building of The Shard let alone converting an integral garage but hopefully nearing an end. For Isaac to have his own room after 4 and a half years of being in a cot bed in our bedroom will be brilliant for him and it matters to me because he’ll have his own space with his identity in it – like his brothers do.
2. School transition – Isaac and Ethan will start school in September. I don’t think there’s enough words to explain how stressful this has been and still is. The fact that the new Education Health Care Plan system is brand new and nobody in a professional capacity seems to know how this system works exactly complicates it immensely. The grand plan to bring together health and education planning into one place relies on good inter-agency communication and that, as some of you reading will know, is not a given. Nearly 26 years on from the first publication of ‘Working Together’ there’s still big gaps between how different professionals think about Isaac’s needs. With in effect 4 months to go there are huge problems to resolve. Sleepless nights are the norm unfortunately.
Anyhow, that’s about where things are at the moment. Still doing work in schools and universities through Izzysbusy (www.izzysbusy.org.uk) alongside everything else. Next major project is around mens mental health, especially for male carers