that extra cuddle

I was away at the weekend with my University girlfriends, the 10th time we have had a weekend away together. Once I work out how to put some of my photos from my spangly new camera up here, I'll write some more about remembering how important my friends are. How easy it is in our busy lives to forget that they are there, arms open, and that it's dangerous to isolate yourself as I tend to do.

The boys were a bit unsettled when I came back, despite having had a lovely time with Daddy and Grandparents and all.

Tonight at bedtime however, I got to see a little more of the wobble. We did the usual bedtime routine, with me, as often happens, becoming "mean Mummy" and a bit stern in order to get everyone to calm down. We had our nice stories and cuddles as usual and I went downstairs.

About 5 minutes later J came down the stairs looking heartbroken saying I hadn't lain with him for long enough and that I had with L. Instead of getting impatient as on another more tiring day I might, I gently led him back up the stairs and lay down for a cuddle.

Because I like to talk openly with my kids, especially this big sensitive "wiser than his years" boy, I asked if he'd missed me at the weekend and he nodded and squeezed me tighter. I also asked who he thought got more Mummy time, him or Louis. And for this the thumb popped out and he said immediately and with conviction his brother's name. When I asked him when L got this Mummy time, it took a while to come out but I knew I needed him to feel he could say it. "When you go to the hospital". I said I understood, but that he needed to know that it wasn't fun when we went to the hospital most of the time, although my job was to make it as nice as can be. I said that L got poked and prodded and had to be really patient while we waited around and that we had a nice time, but that it wasn't special. Not that L found it upsetting though, as I gestured to his little brother and we giggled at the fact that as usual he was singing away in a silly voice in his own pre-sleep routine.

I told J I understood how he felt, but that here I was giving him a huge long cuddle because I want him to feel special too. That mummy loves both her boys and tries to share herself, but also that going to the hospital together isn't a choice, it's just part and parcel of his condition. Which is unfair for everyone.

I know I succeeded in letting him be honest and not feel guilty about feeling how he felt, although it hurt my heart a bit for how he wrestled with himself before saying it.

Instead of feeling the burden of how to make sure this sibling of a special brother is ok, I can see that each of my boys needs something different from their Mummy, and I have to work out what that is and listen to my instincts. With L sometimes it comes more easily because he's a child where he's either happy or sad, cross or calm, scared or confident. Also because me and him have our own bubble in how we deal with the hospital and illness stuff and it works and evolves with each visit. With J I have a little boy for whom you have to gently coax up the emotions all the way up from his toes

Tonight all it needed was an extra cuddle, and in the grand scheme of things, that felt really lovely.

Pre-Weekend Thoughts

It's been an interesting week.

I've been a bit fractious, a bit happy, a bit stressed and a bit calm and right now I feel pretty good.

I'm proud that me and D chose to air grievances and sticky things over dinner and manage to get it all said, discussed and end up giggling by the end of the evening.

I'm glad that on Friday I have chosen to take the day off and wind my way in a relaxed fashion to the 10th Annual Girl's Weekend.

I'm glad that I finally decided to buy myself a digital SLR camera as a present and reward for working hard and trying to be all that I can be.

I'm very grateful for some kindness and wisdom found at work this week. I know how lucky I am to have my job and be able to work as I do while my little man is well enough and "typical" enough to cope without me. I want to embrace this while I can.

I've also been doing lots of deep breathing and trying to look inside myself and limit any damage that the stresses of my life might be causing. I am looking forward to getting better at this.

And I had an amazing session with N where I made a comment that was so visual and clear that I said I wished I could draw it. So out came the paper and chalks and that's just what I did. It felt amazing. I can't wait to talk more next week about whatever it is I drew there.

I have been thinking too this week about my virtual life and my real life and how to marry the two, the differences in them and how I present myself. It comes off the back of comments from one of my 18p- buddies and has really set me thinking.

Many of us feel the same confused gratitude for these strangers online who play such a huge role in our lives. But when the promise of a 3D intervention occurs, like the upcoming conferences, or photographs on facebook and blogs like this that look deeper in, it does take a while to level it all out.

Living a virtual life in place of your own is not healthy. Humans are meant to interact, hug, look, see and love. But for me, here on this blog and more so with the 18p- listserve, I am aware of the boundaries that being on email crosses. Race, class, education, income, culture, geography, religion, politics. On there some of that skims by but none of it matters.
Not one bit.
And that's an amazing thing.

Little Bit Low But Need to Break the Blogging Silence

it's hard to write when I'm feeling up against it. To spend time putting the negative thoughts and moods into words and making them real.

I've been home alone this week while D was on yet another business trip. I'm tired and kind of feeling ill and anxious and letting all kinds of things get on top of me. I'm trying not to make the casualties of this busy life always be the nice stuff. Watching the swimming lesson, playing with the kids rather than half focussing while doing chores. But also I want to keep doing my job well and make sure I don't let anyone down. It's the same old cry for any working mum I know.

So while I sit here in a bit of a blur, not entirely sure of where my head is or what really the problem is, I am quite sure that I haven't been a very nice or satisfying mummy, or friend, or colleague, or daughter or sister or wife for a few days. I also find that when I feel like this, my virtual life exceeds the expectations and realities of my actual life, and that can't be a good thing...can it?

Which is why I want to say a couple of things.

A "goodbye" to a wonderful old lady called Tilly who welcomed me as if she were my own granny, loved my kids and cared about their happiness, led a long and amazing life and will be sorely missed.

A "phew" that my sister is at home recovering from her operation, and a hope that she clears the infection and gets back to being my happy healthy worry-free big sister again soon

A "thank you" to a friend who tonight sang and entertained a generous group of people in a local methodist church and chose to give the proceedings to the C18 Europe gang.

A "sorry", in fact lots of "sorries". To my boys who've had grumpy mummy strung out a bit more this week than they should. To L who got a bit of frustration from me, partly due to lack of patience with the frequent accidents this weekend, but also as a result of a tough hospital day on Friday catching up on me. To my husband who came in jetlagged tonight, saw me for 10 minutes or so before I ran out to said musical charity evening, and is now snoring in bed with the football blaring. It's nice to have you home, I'm looking forward to a quiet week together.

Some more "thank you's". To my Marble friend, for sharing her excitement and giving me hope, helping me to have something really fulfilling that is rare in how I welcome finding the time to give to it. To my neighbour for cutting the hedge for me and letting my boys clear up all the leaves. It was a gorgeous snatched 45 minutes of neighbourly fun while we waited for my uncle and aunt to pick us up for a lovely dinner at my brother and sis in law's house. To my beautiful blonde friend for the phone call the other night bridging north and south London with a glass of wine and long vent of shared frustrations, for my other gorgeous super stylish friend for drinking and helping to share the stuff that can't be said with just anyone. for my in-laws collectively and a happy meal that cleared my mind and filled my boys' tummies last night. For anyone who's been nice to me that I've forgotten to mention.

A quick medical update - unforgivably lumped at the end here. We were looking again at whether L's spinal curve was progressive, so on Friday went back for an xray and found it looking ok, so another reprieve for half a year or so. But on the back of a good long consultation, I'm now waiting for a neuro-muscular referral to see about the toe-walking, had an ultrasound on a lump on his knee which, surprise surprise, they'd never seen before so could only say was a veinal malformation, but thought it looked fine and we should just keep an eye on it. We have our kidney appointment on 23rd and I'm trying to keep my mind off that until I get there. I am however allowing myself to note down the odd pattern of his wees today (which I know intimately I can tell you!!!!!!!) and which will lead me to do a bit of further searching before I find myself in front of the renal team.

I look forward to a week of feeling calmer and more able to cope.

A Week Full of Progress

After an overly emotional post last time, here's one full of fun and progress.
This week with a lot of hard work and patience, my lovely little boy has taken his first steps towards toilet training and we are confirmed in phase two, training pants.
We smile when there's an accident, we find lots of ways to cajole him to go every hour without making him want to slap us from nagging exhaustion, and as yet have not resorted to treats or star charts.
As parents of these magic little kids, any progress is good and I guess we develop the attitude that instead of planning and worrying how long this phase will be, however long it is, is however long it takes. So I'm ready to have spare clothes in my bag and a patient smile on my face for 2 years, as long as I get to see his pride at his lovely colourful big boy pants and when he manages to get a result where it should be.
The second bit of progress is a big high five for Daddy and his utter stubbornness on something that I was ready to find ways around. Because of a little low muscle tone it's been really hard for L to pedal, and no matter how much J and all of us tried to get that right leg down, it didn't seem to come. So I started to look at balance bikes and a way of having him off his cute but now babyish looking toy motorbike (kindly lent by special friends). I was all ready to remove the pedals and stabilisers from his big cousin's happy hand me down, on the advice of the bike shop, when Daddy got all quietly male about it and muttered how he was sure we were pretty close.
We had one slightly fractious try the other weekend and a reminder that getting frustrated was so not going to do it.
Then this morning while I mindlessly did some domestic tasks and relaxed in a Sunday morning kind of way (ironing, it seems, is not as devilish and awful as I have always thought!) Daddy and boys played in the garden.
I suddenly got called out by big bro saying I "had to come and see this now" and went to the garden to find L pedalling. With both feet. In a continuous motion.
I was so shocked, and so happy to be shocked, I yelped and heaped praise on them all.
I went to find them all in the park after the ironing and I'd finished my chat with my lovely old friend on the phone, and stood at the gate looking for my brood.
My heart plipped a bit as I saw J speeding around on his bike with his helmet, and peddling furiously behind him, with Daddy stooped over pushing him up the incline, was my super boy.
He proudly showed me how he could pull the brakes too (in fact J was the one who showed me) and shoved my hand away when I tried to give him a gentle push, wanting to do it himself.
Awesome and magical and a joy to write about.
I'm smiling as I type and as soon as I'm done, I'm going to watch the video again that I took on my phone.

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.