Better

A better day, getting Reuben over the hiccup of this morning of a rising temperature and throw up, or perhaps just a hot flush like his Mama, Jason arriving back from Finland-Oslo-Sydney and grabbing the reigns which I was losing my grip on. The last week has been very trying for me and I'm exhausted at every level. I could feel the slip, gentle at first, then a tug until it had reinvented itself into a full flown haul. At times my best intentions are thrown sky high; I want every day to sit and learn sign and then to teach Reuben yet the mess of life, akin to the unfathomable mess in the playroom, creates such barriers to achieving such a simple thing: teaching my son his first language.

I need to get some energy back to continue on a programme which motivates me, learning more sign and teaching the boys the same, and even once in a while showing them that the kitchen is for cooking.

I find it impossible to think in the midst of disorganisation and I must set myself some goals this week to getting back on top of things. The 18th when Reuben will require a mini cocktail of surgeries and procedures - surgical closure of his trach stoma, gtube change, sedated ABR - draws closer. It took me only recently to discover that all along I could have been paid to look after Reuben since he is institutionally deemed, and that we choose to have him live at home is thus compensated for. I must put this in motion as that financial reward will pay for someone to help me clean the house. It's been 9 years since I've had domestic help beyond nursing which is solely for the purpose of Reuben's medical needs, so I grabbed a Groupon for a bargain maid service in the hope I can get back on track again. It never felt quite right to me that Reuben's medical needs were helped but the support was never given to help the mother spend more bonding time with her child. Instead she'd battle the added domestics that came with having a car load of medical supplies arrive every month, its storage and renewal. My photography has taken little time away from the boys in reality to necessitate a babysitter as beyond a few hours shooting and travelling per month, I work at night when I should be sleeping. I think I'd find the idea of a babysitter a little tough: I just couldn't let go. I don't want to miss a thing of my boys lives. The waiting for it was just too long.

A fab birthday party for Danny, the boys full of energy racing through assault courses and giant slides, spending some time amidst the running around with my friend in CHARGE (Syndrome) CHARGE and Danny's Mum Jackie whom I met through Kristi, then dinner at Paco's (despite the treats, Callum was starving from all the exercise) where Mary and I would often go before she left to live in Boston. Ah, miss her.

Didn't take my camera, so this is it for today. I know, lots to criticize, but it's real life and despite himself, Jason will one day be glad for it. He hates cameras and photography, ironic hey, but I just grabbed the bull by the horn when he arrived back from Sydney.

Had a total night off so am here on Blip and I'm having fun. I'm going to do Reu's nightshift though so Jason can get back on track after so much travelling but he'll do the school run tomorrow for Reu and work there so Callum and I can have some us time together.

Edit: On re-reading my 7th Jan Blip, I failed to mention something huge, that is, the joy of friendships I've made online. I was just in a mindset of not meeting friends daily to socialise, but I've chosen a slightly different route which has been incredible for me, that is, meeting you all here, on ivillage, in blogland, FB and in the wonderful world of CHARGE. I feel very ungrateful for having misrepresented the support I've been given there.