Friday, 4 June 2010

3 Years...

This day, June 4th, is the answer to the question of why this week I can't keep more than one day and a few hours in my head at any time. I keep looking at the diary, trying to engage with what comes next, who I have to think about, what we're doing at the weekend, what work I have to do...yet all I can think about is now...
or more accurately...then,
Because June 4th 2010 is the third anniversary of L's diagnosis.
So bear with me, as I try to think back to then and now and a little of the inbetween.

I remember sitting in that waiting room at the Royal Free Hospital with my little 9 month old rattling wheezing smiling boy, with a calm expression painted on my face. Like a swan, serene outside, paddling furiously underneath, I knew that all I'd suspected for the last 18 months was about to be faced.

My first clue was the woman behind the counter showing recognition when I signed us in.
Now if there's one thing I wasn't used to back then, was anyone remembering who I was and why I was there. I'd spent 9 months of pregnancy repeating myself, 9 months of his little life fighting the label neurotic mother in and out of hospital, repeating myself. So to be recognised and have the imperceptible head tilt and smile from the usually grumpy receptionist, was SO not a good sign.
In fact every doctor or nurse who walked past in those waiting moments seemed to look and smile and rush on through the corridor, noticing us.
Alone in my head I began to feel proud and feisty that I was right, and quite sick about it too. And I became aware of the chant going round and round "please don't let me be right, please don't let this be real"

The kind paediatrician called us in, sat me down and delivered the diagnosis of Monosomy 18p, but then the sting. That it was so rare she couldn't tell me anything about it. That they'd arrange some tests so to watch out for appointments and that we should go to see the geneticists at Great Ormond Street in a few weeks.
A few weeks!!!
A life changing diagnosis and I was supposed to sit still until then. I could barely breathe my way through each second.
So we contacted a private geneticist and went to see him very quickly. He was kind, took blood, wanted to see for himself and told us whatever he could. Eventually we got to our appointment at Great Ormond Street with the very nice geneticist and she talked a little, confessed how little she could tell us, asked if we would let her see L sporadically to keep on top of his progress. And she apologised. Above all she apologised for their having missed finding this during my pregnancy.
And we returned to Dr W, the only medical person we trusted and unbeknown at the time, secured him as shepherd through the first three vital years.
It's all a bit of a blur but some things punch through.

I remember calling my therapist and saying "you know I said I might be back one day...well I think that day is now"
I remember the pain of telling if not the telling itself
I remember the pain of the wrong reactions if not the reactions themselves
I remember the pain of not knowing what my Daddy would have thought.
I remember how exhausted I was by this lonely journey, and the realisation that I now had to shepherd all our families at the start of theirs.
I remember my rage at the denial that 3 years on is still present in some places
I remember sitting at the bottom of the stairs crying and trying not to let J see me
I remember his anger, his rage, soaking up all of our emotions
I remember paying for medical notes, getting them and reading them, contacting lawyers and deciding whether to sue them for the mistakes we found there.
I remember knowing I couldn't do that because that would mean agreeing with the phrase "wrongful birth"
I remember how the rearrangement of my own DNA felt, I still feel it.
I remember all this and yet I remember nothing.
I feel how much has happened in these three years and yet time has no meaning at all.
I miss the comfort of the past, and the naive boundless hope of the future, but I can now embrace the present.
The present as it stands right now. My little man, chuntering away while he sits on the loo, laughing, singing, playing. And his big brother, listening to me talk about the new confusing rash and needing to talk to someone at the suncream manufacturer, and him saying "because nobody knows that our little boy's got 18p deletion"

We are all changed by what was confirmed three years ago. And while the pain is present and sometimes the hope of his good progress feels torturous, with all of that, we still look forward and are thankful for all we have.


  1. Beautiful Sara. Thank you for sharing with us. You are a beautiful warm loving woman and L and your family are blessed you are his Mum!! Big gigantic hug!

  2. Oh...the day.
    I remember mine as well.
    Hope your week is going well.

  3. Thank you for sharing. We all have our story of how we found out, but the emotions are definitely the same.

    If you don't mind my asking. I'd be curious to find out some of the earlier story, before the diagnosis.

    BTW, I still need to email you at some point. I haven't been putting a lot of energy into GH stuff. I am still catching up on other things after returning from vacation.

  4. Wow! That was so sentimental and beautiful, thanks for sharing! I love that we can all read each other's thoughts, and know that we're not alone.

  5. thanks all. "the day" indeed. glad to have got it out of my head and as my brother new to this blog has now seen, I'm nothing if not overemotional and sentimental. I think I always have been but now there's an endless subject matter! Candice, email me whenever you want about whatever you want over on FB. I'm happy to answer any of it. Thanks to all of you and have a great week x