I need to say, I am a rubbish blogger, I wait too long between posts, I make promises about writing more regularly than I do, I hide away in my head rather than come here often enough. For that I apologise and thank you for popping in on me every now and then to see if I'm still here.
When I do post it is because I have no choice, I need to come and share, either the fun and silly or the deep and darkish. Tonight it's a little more of the latter...
I've been battling with myself quite a lot in the last couple of months - about stress, work, diet, home life, weight, age, height, you name it - and there are various reasons for this.
Firstly I am about to run head first into a milestone birthday, the dreaded "big four oh", which will come slamming into my life a week on Saturday. I'm fine about it, and all, in that "am I really, stop being ridiculous!?" kind of way, but dead dads and complicated kids and wobbly bellies do come and spoil the party in my head quite often. On the whole though, how lucky I am to be approaching middle age healthy and with two wonderful kids, a lovely husband, a job, a house, a generally positive attitude and some lovely creative projects that keep me hopeful and excited and fulfilled.
Secondly I've just had the 5 year anniversary of my gorgeous little man's first and still most palpable diagnosis. The one where my DNA shifted into a new place and my life altered for good. The difference with June 4th this year is that I've been doing a lot of talking and thinking about when it happened, what's gone on in between and looking at our life as a family. This is because I have been lucky enough to connect with three lovely "special" mums, who at first were coming to me because I could help them to talk and not feel alone. But by chatting about their gorgeous complicated kids, and about how happy I am to be helping and talking to them, my own aching hidden away loneliness has been brought out of hiding. In finding through them three new kindred spirits, one of whom I knew at University when life was so easy, I now feel again how alone I've been. How despite my virtual Chromosome 18 family, nobody in my real life knew what it was like to have an atypical family. It's amazing to have company, although i wouldn't wish it on any of us, so Rachel, Jules and Natalie, thanks. I didn't know I needed to talk but I'm glad I have.
Which brings me to the title of this post and the link below. I am finally able to look back at how far we've all come, from this lovely seat here in "officially off red alert for now" land. I have a five year old boy who has exceeded every expectation I was hoping we could have of him. We live a fairly typical life, and if you don't count the stuff in my head and heart, are just like most of our friends. My boy walks, talks, writes, counts, reads, plays, loves, laughs, performs, expresses himself...he is a million times more than anyone hoped or predicted and full of even more untapped potential.
It didn't look like it would be like this and we may not always have this luck, but I am finally in a place where I truly appreciate it.
In homage to how far we've come and how lucky we are, I want to talk about the man you will see if you click on the link here because that's why I'm writing this post. Browsing iplayer for a drama I needed to catch up on, I saw this clip for Great Ormond Street ,a BBC show about the wonderful hospital that we thankfully don't see too much of nowadays. This man here is the white haired saviour who was the first to listen, care, dig deep and then support us through the horrible days of our very sick baby.
There but by the grace of whoever you believe in, we only know a bit about sleep studies and low sats and blue lips and slumps and operations and worry and it was all a long time ago.
There but by the fortune and love and luck we have, life is sweet and I am glad to be able to see it from a calm and safe chair.
If the last decade is anything to go by, 40 will be a piece of cake, and I am looking forward to finding that out.
