Tuesday, 17 November 2009

Shannon says...

Now that Paul has shamed and outed me for my lack of posts and for nagging him, I thought I better put in an appearance. It's true that he's much better at sitting himself down and just writing, always so bloody well, about what's been going on. I keep telling myself that I need to be better about all that - writing this, writing people - but when I sit down to update I start doing that thinking thing and that inevitably leads to the crying thing. And some nights, many nights, I'd do anything to avoid either.

The only exception is ringing the hospital before I go to bed to see how Maggie is, hoping each time that I won't hear her crying in the background because it breaks my heart and makes me feel so guilty and sad. Or that the nurses won't tell me she's been 'unsettled' because that means she's been crying. And the girl has got an unbelievably heartwrenching, tragic cry - it's more of a hoarse wail, where her whole face wrinkles and she just becomes inconsolable. It's only this past week that I've been able to see her cry and not cry myself.

A lot of talk of crying here...this is why Paul does the posts instead of me! But I was telling Paul the other day about how perhaps the blog paints a stronger, more together picture of us than what's actually happening. There aren't as many tears as the first week - I don't think that's possible - but there are still a lot. At the hearing test, reading about other children with cerebral palsy, saying good night to Maggie, looking at the double buggy, and until yesterday, every time I took a shower. Even Will Young's new video where he plays a pregnant man set us off. Quick, scared tears that come from thoughts of the terrifying reality are brushed away and shaken off before they really get to us.

Like now.

So, back to my ticking Paul off...I thought I'd take this occasion to actually tick him off for misquoting and misrepresenting me! (Neither of us can ever let a thing go, even now!) It wasn't that he was unnecessarily negative about the care that Maggie receives, it was that we rarely acknowledged the people that have been good, even great, with Maggie. Nurses that tell me about how they can't help themselves getting Maggie out of her cot for a cuddle, that come by to see Alice too, that encourage Maggie to sort out her breathing/secretions on her own rather than storming in with suction at the first dip, the speech and language therapist for being super positive and encouraging about Maggie's swallowing and suck reflex, the consultant (that Paul thought was half-wanker) who has become my champion in the Room 2/Room 3 saga (Maggie's now in Room 3), my GP who was so lovely that I've decided not to move to a clinic that's closer because I want the girls to have her too. There have been positive people, positive experiences - that's what I was going on about.

And then today happens. Where, despite there being only 3 other babies in Room 3 (making it nearly a 1 to 1 nurse:baby ratio), I had to ask Maggie's nurse on two separate occasions if she was actually going to feed her as it came up for half past on what was meant to be feeds on the hour. And the speech and language therapist told me that the nurses weren't documenting their findings on Maggie's oral stimulation - which makes her job a lot fucking harder. And to top it all off, I came back from getting some water to find Maggie's nurse pushing the plunger down on her formula - which is exactly what sent Maggie back to Room 2 due to a blue episode in the first place. She palmed me off patronisingly when I told her that she wasn't supposed to force it down for Maggie - it's okay, just a little, this is what you have to do to get it down. And sure enough, a few minutes later Maggie's colour goes, her oxygen levels drop and she vomits. I kicked off (in my own way of kicking off) and the nurse was sheepish and apologetic and wrote on Maggie's chart for the next shift nurse not to force her feeds. But will this information be passed on to the nurse after that? As Paul would say, will it fuck.

It's that hit and miss, fall by the wayside stuff that does my head in. So that's why our consultant Dr Roy (another good 'un) is getting a visit from yours truly tomorrow. Time to kick some ass.


  1. They tend to take that patronising "trust me, I know, I've seen this a 1000 times" tone so easily don't they! I have this on occasion at daycare (for ordinary stuff, you know)and it always sends me off feeling that I'm either exaggerating or not caring enough. But you know, at the end of the day I have to convince myself that nobody is ever totally right. And definitely not ALL the time. And we move on.
    But when we're talking about a sick girl like Maggie, djeez, you'd want the very very best all the time. That's only normal. It's alright to call them twats I think (I would, and Bert would tick me off about it ;-)), as long as you say this in anger because you're worried sick and not because you actually doubt their ability to look after Maggie properly. That's definitely not good. Those "forcefeed" nurses for instance, they get no sympathy from me! How horrible! So you go and kick some fucking ass! They deserve it!
    All the other ones that look after our children every day so lovingly and so knowingly: respect!

    All love,

  2. Shannon - I have the ultimate faith in your supreme arse kicking abilities so I know you'll do so & it will make a difference. In the meantime hurrah for all of you & hurrah for having access to arses to kick. Lots of love, Tara xx

  3. dearest shannon,

    when mary comes over next week, please allow her to help you make a fine meal and celebrate Thanksgiving, or as close as you can muster. she will have a luggage full of love from everyone over here, and she carries with her all of the love i can give to you and paul and the girls.

    as i read your words, i have those thoughts of... if only i could take her pain on me and relieve her. if only i could make it all go away. my eyes well up and i think about being there with mary to just give you a hug and wish you all the very best. please forgive me for not being able to go over, but i will do my best to be a big strong texan all alone over here.

    like paul says... music is a great healing tool. listen to some good music.


  4. fucking hell!!! we'll get up there soon, promise. and we'll bring cake. it helps, sometimes. all the best from us all, do not give up the fight. XXX

  5. Hey Sis- Bob of course made a comment before he decided to go and lose a toe on me....seriously 3 damn days before I am supposed to come see you?!? Of course now I am not sure when I will be there, but it will be as soon as possible....and I have the pumpkin pie fixings all ready to go. We're doing okay over here...thanks for the return support. Hope you kicked some good ass yesterday!

    All my love

  6. Shannon, you are amazing! Maggie and Alice will be so proud to have a Mama like you. Even throughout everything you're going through, you still manage to take time to mention the little positive things... which if nothing else, gives those of us who are following your life and sending so much love it surely must be polluting the air, feel a bit of hope - and pride that we know a woman such as you.