It’s been 6 months this week since Samuel’s aortic stenosis was diagnosed and he had his cardiac catheter. Thinking back to that week I really feel we’ve all come a long way and emerged the other side of the big scary cloud we were stuck under.
There was a time when I felt his heart defect heavily weighed on my mind and I never thought I would be able to ‘forget’ it and get on with my life. It was a very lonely time but I’m genuinely in a much happier place now. Samuel’s health is very good which has helped. The uncertainty of the future is still there but I can put it in perspective and its at the back of my mind. I know his valve replacement will be a difficult time for us but I am able to forget about that anxiety for now and will cross that bridge when we need to.
I’ve met many new people and been very thankful that the heart parent community on the internet is as strong and big as it is. Whatever the anxiety – however big or small – there has always been someone who has been through the same and can offer some help.
I’m now busy making plans for the future and feel clear about the direction I’m going in – and I will get there regardless of what Samuel’s aortic valve decides to throw at us!
So work has started on the jelly roll quilt and already I am converted. After lots of deliberation I chose ‘freebird’ by moda and love the fabric. I’m hoping I can find somewhere that sells it by the metre so I can do a border and binding that matches. The difficulty will be chosing which fabric to have. Such a pity I’ll have to make trips to shops to find this fabric though!
My eyes watered when 202 blocks were mentioned so I’m taking my time with it so I don’t get too fed up. Already I’m worrying about quilting it. Its going to be big and quilting is the bit I enjoy the least. I like putting the top together and then rapidly lose interest. I need to make a new friend with someone who owns a long arm quilter so I can get it done on the cheap. Maybe I’ll start googling that…..
I’m going to try hard to be positive and not descend into moaning! Another week I’m pleased is over – been very busy and feel like I could sleep for several days if given the chance. Samuel is still waking stupidly early and Steven has been very unhelpful in letting me have a lie in one morning. Work is still manic and showing no sign of letting up so I’ve got the feeling of being on a treadmill at the moment.
I went to a meeting about the Safe and Sustainable programme on Tuesday night. The department of health is currently reviewing all children’s cardiac surgery and under the current proposals it looks like Oxford could lose surgery. This would means we could have to travel to Southampton or London for Samuel’s treatment in the future. I went to the meeting open-minded and supportive of the theory behind the suggestions made. Sadly I was left doubting the whole thing and very skeptical about the idea. It seems the suggestions made have no foundation and at no time did the panel back up their arguments. I’m worried the decisions have already been made and the meetings are just an exercise in ticking the right boxes so it looks like correct process has been followed. We will be very very sad if Oxford closes and it is already clear that the people working there are looking for jobs elsewhere. I’m feeling the need to put this energy into a good moaning letter to my MP!
But let’s be positive!
I’ve just bought lots of wool on eBay to make myself a couple of things (please, no-one tell Steven as he may ask how much money I’ve spent)
I’ve got a few days off work next month to escape to Mum and Dad’s caravan with Eloise and Samuel. Steven can’t get the time off work so I’m biting the bullet and going on my own. I’m a little scared of the thought of no adult conversation for nearly three days (hence the large quantity of wool to help me knit my way back to sanity)
I’m really enjoying my book at the moment – The Kite Runner. Despite my tiredness and falling asleep mid-chapter I’ve got a big pile of books to work through.
At the moment I’m thankful the week is over! Had a long week at work and feel like there’s going to be not let up in it. I’ve had to bring work home for the weekend and have a very long clinic on Monday. I will be relieved when Monday is over and I’m hoping I don’t sit and worry about it all weekend.
The week started on a massive high – I found out our tax credits had been recalculated and I was owed a hefty sum of money from last year. This was paid in full into my bank account which was a lovely surprise. It means we’ve been able to buy a new TV as our has been threatening to die for about 18 months. I also went through my 101 list and decided to bite the bullet and buy a Radley bag. It arrived yesterday and I’m thrilled with it (in a really sad way!)
I bought a new dress yesterday. It is so far removed from anything I usually wear but I decided to be brave after hours of agonising over it. I was drawn to the fabric more than anything. Its a lot shorter that I would usually wear but the mini Gok Wan that lives in my head was telling me to go for it. I wore it out last night and had lots of compliments on it so perhaps I should be braver more often. After the inital self-consciousness I was able to forget about the fact I was wearing a short dress! Talking of Gok, this week he put a girl in a maxi dress with a butterfly print. I loved it but sadly it was by Ted Baker and cost £200. When I was out last night there was a girl wearing a smaller dress and another in a skirt both in the same fabric. I am taking this as a sign. I will not though pay that much for an item of clothing so my new mission is to find similar fabric to make a dress myself. Hours of internet trawling lay ahead….
Had a moment with life coaching this week. I have finally admitted that my hoarding and generally household clutter is an issue and needs sorting. I do blitz it every so often but it soon all creeps back again. Steven is adamant we need a new bigger house. I’m just convinced we need to through some of our rubbish out! Paperwork is the project of the week – it’s the one that bothers me the most. I’ve bought a new box file in preparation and that’s my job for this evening (inward groan). In the new spirit of positivity I am determined that this change is going to be a permanent one!
And on a random ending I have attracted loads of new twitter followers this week. It’s all spam related and I have not got a clue what I have done to deserve it!
Right, a mountain of shredding and a powerpoint presentation on catheterisation are calling me.
Despite making a promise to blog at least once a week I’ve failed again! Never mind. I’ll get there eventually. I have been busy though so thats my excuse.
Yesterday I went to Barrys in Birmingham and treated myself to some lovely fabric
The main one at the front is for a dress for myself. My sister accused me of being too lairy but I’m listening closely to Gok Wan who has advised me to step away from my safe zone of jeans and black or white t-shirt. With the world cup coming up I know I won’t be able to get near the tv so I intend doing plenty of sewing. I’ve got enough fabric to make a dress and top for myself and a dress and outfit for Eloise.
I’ve also been working in the garden having a good tidy up. I’ve bought some new plants but I’m also trying to ressurect some old ones as well. Eloise helped me buy the new plants so guess what colour scheme we’re closely following….
Still have lots on the list to do but I’m getting there. Made £20 on ebay last week – not a life changing sum but enough to get some fabric! Braved weight watchers this morning and I’m 2lb below goal so I’m happy that I’m keeping on the right track there. So all in all – life is good!