It feels like a while since I’ve updated. In practice I think it’s just that the weekend draaaaaaaaged with such efficiency that it just feels like weeks have passed.
I’m delighted to say that Mickey Mouse did make an appearance on Friday and even brought Minnie along for the ride. I’m even more pleased that Dominic was so excited at the prospect that his cheese loving hero was coming especially to see him that he leg waggled his way around the ward for at least an hour before they eventually turned up (Mickey, it seems, needs a cup of tea between each visit which seems like a horribly British habit for such an American icon). The meeting of mouse and boy was a success, despite my worries. I managed to ensure that he met them out of his bedroom so he didn’t feel descended upon and Dominic managed to quell his urge for fantasy violence towards anyone who makes him feel uncomfortable or anxious. He instead did a sterling job at pretending to be enormously focused on making Darth Mouse practice his light sabre technique and completely oblivious to the giant mouse stroking his head. He was soon pulled back into the conversation however when I mentioned the Princess Leia Minnie that he had in his toy bag. Dominic got to talk about two of his favourite things (Disney and Star Wars) and showed them some moves. Mickey tried a few, of what I think were meant to be kung fu style moves, but in his defence it’s hard to make giant plastic feet do anything that resembles anything other than a funky chicken dance. So I got told afterwards by an enormous woman with strange glasses, they’ve never spent as long as they did with Dominic and the team were quite captivated with him. She promised to send some pictures to my email, which she dutifully did.
The following two days were less happily spent with tiredness taking its toll on both of us, but only one of us being allowed to cry in public about it. That’s pretty much all he did on Saturday, too tired to ignore the stomach pain, and too exhausted by the crying to play. Thankfully Sunday was a better day although it made me extraordinarily sad to see Elliot so quiet and removed from the world when he came to visit. I received a letter from his school saying a space had become available with a children’s counsellor. I hope it might help in some little way. However happy he looks there is always just an air of great sadness and worry about him. The night time crying and bed wetting suggests that it’s not just my imagination either. 7 (almost 8 ) year old boys are so incredibly difficult to communicate with at the best of times as they teeter between wanting to still be the little boy sat on Mummy’s lap, but being socially conscious enough to be embarrassed by this desire as well. I occasionally see the real Elliot shining through the shell, but for the most part he is locked away, absorbed in distracting himself from whatever troubles reality holds for him.
Lilia, my beautiful Lilia, grinning and happy when I’m whirling her around to music, sad and unsure when standing alone. I think she misses my day to day involvement in her life more than Elliot, being young enough to still want to be within a few inches of me when I’m around. Her personality equips her better for still being able to draw real pleasure out of other activities though, only feeling the sadness when she pauses to dwell on it. I think both of them will take a long time to recover from what only can be thought of as their abandonment by their mother. Before you think it necessary to reassure me that I didn’t abandon them, yes I know in principle I haven’t, as I didn’t choose to leave, but what is the difference to them? They’ve still had their secure world ripped apart having only just got to the stage where they were ready to put it together again after the last time we languished in GOSH. I’ve always been their one constant when I’m around, so my absence leaves a hole.
What is hardest for me, however, is watching that hole closing. It happened the last time Dominic had a long stay. Slowly the phone calls flowed less and less naturally as the children’s desire to talk to me waned rather. I wasn’t involved in their day to day life, only seeing them for brief, tense periods at the weekends, a far cry from them fighting over the phone to tell me their news in the beginning. Now they have returned to school I am barely seeing them. They come up at the weekend for a few hours and then go. It’s awful and it makes me want to scream with frustration, but there is nothing that I can do. Elliot has become monosyllabic on the phone, and spent most of his time visiting on Sunday staring at his computer game. Not that I can blame him, there is nothing to do on the ward and we can’t really go anywhere as things stand. It’s an impossible situation, in protecting one child, it feels like I am loosing the other two.
I try not to think about it while I am here, it serves little purpose other than depressing the hell out of me, but I am conscious that in protecting myself I’m also shutting my ‘other life’ out. As I have mentioned before it can be enormously difficult to not, in protecting myself, hurt those closest to me by emotionally shutting down. Having seen the damage it did before to both myself and those I love, I try my hardest to snap myself out of it when they are around.
For anyone thinking that shutting down when it comes to your own family is abhorrent and an unnatural way for a parent to act, I completely agree. But the level of panic and despair and frustration that come rushing to the surface when I allow it would make staying here for as many weeks as I already have utterly impossible. Because all my emotions, about being away from home, my children’s suffering and Dominic’s health are so tangled up in each other, if I allow too much honesty about the way I feel to come pouring out, there really is no stopping it and I end up hiding in the toilet trying to cry quietly or taking it out on everyone. For the most part I need to be able to think logically and laterally to help find a way out of the medical mess we’re in. I have to be able to sound cheerful on the phone to my children, play happily with Dominic and smile and be friendly to all the staff. I need to not be in a constant state of anxiety as it has nowhere to go, no focus to direct it. I need to dampen my emotions to get to the end of the day with a plan of action in mind, and a positive attitude.
Just having one day with my nerves jangling at the possibility of Dominic’s surgery happening was emotionally so exhausting it was everything I could do not to sob in front of the doctors when they came to tell me that Friday would not be the day and we would have to wait and try again on Monday, which, for the avoidance of doubt, is today. I did in fact let a few tears roll down my cheeks after they had left and I was discussing with Roger if there was something, anything that we could do.
There of course isn’t, as the healthcare system makes you helpless to change such things. It is what it is, there were babies sicker than Dominic and they needed their operations more. The NHS does not allow surgeons to cancel scheduled operations to make way for emergency ones so we were suck waiting for the long weekend to pass. And it did.
My waiting in one sense is however now over. In the emergency operation lottery Dominic’s numbers finally came up and I’ve just taken him down to the theatre. It was with some relief that I saw the same anaesthetist that has been there for all his operations. A gentle and kind man who is happy to talk at length if you want to (which is a rare attribute for someone who has chosen to work with patients who are, for the most part, fast asleep). Dominic felt no reassurance at all however and he was so scared he was screaming. That’s the disadvantage of him being older; he remembers what an operation is and what it involves. Although for Dominic the fear stems from having the anaesthetic medicine only. He remembers that it hurts as it goes in; he’s not worried at all about the pain afterwards or what they’re going to do to him while he’s asleep. Seeing him so distressed makes it so much harder to emotionally justify what I am putting him through, and doing it so many times does not make it easier, it just makes you more numb to the abnormality of your reality. Crying when leaving your baby for the smallest, simplest test is normal. Being able to watch your precious child scream in panic, and then calmly place them on the trolley as their head lolls with unconsciousness, kiss them goodbye, and stop to pick up their beloved toy which fell in the struggle and leave without a tear shed is not. But that does not mean I’m inhuman, it means that the crack deep inside that widened last time I shushed and cradled him when he was terrified by something that I had agreed to, grew a little more. Quietly, painfully, away from public eyes mothers that have done these things a thousand times hurt too however cold we can appear.
I hate kissing his clammy forehead and walking out, seeing the doctors leaning over this tiny boy on a huge table. That’s how I know that my emotions, however deeply buried, are still very much there, as the pull of my need to be with him and protect him makes it almost impossible for me to leave. But as I’ve said, I’ve done this many times now and know my role in all of this. So I have left my darling boy in the hands of people I trust to do the best by him and I will settle down and watch some House episodes, which has become somewhat of an ironic tradition of mine to try and stop myself watching the clock.