I'd forgotten, until reading the latest collection of the original EC Segar Popeye strips from the 1930s, that there was a character called Alice the Goon. She started out as quite a hideous and frightening zombie-like figure - a henchwoman for the evil Sea Hag - but later became quite loveable and motherly.
So that's what we call Alice now: Alice The Goon.
We don't really.
And did you know, fact fans, that Spike Milligan named The Goons after Alice The Goon?
Anyway, below is a picture of Alice I took this evening. I didn't mean to pose her next to the Popeye book - it was just there. But look at the fantastic cultural paraphernalia she's surrounded herself with: Eric Carle's The Very Hungry Caterpillar, Popeye, The Amazing Spider-Man and The Guardian Guide.
The holiday day after Christmas and as you can see in the pics, the girls are still in a festive mood, thanks to the matching outfits from their Uncle Jim and Aunt Kirsten and cousins Gretchie and Sammy.
When we got to the hospital today it was obvious the peace and quiet of yesterday was the exception rather than the rule - three more little children on Maggie's bay and it was sad and upsetting to hear their crying, see their distress. When we were on NICU the majority of the little babies were actually fine, just too small and needing to catch up with their due date before going home -their tears were easily stopped with food or changing their nappies, job done. They had no idea where they were, or that they shouldn't be there. I keep walking around the ward with Maggie to stimulate her with the bright lights and new environment and at times it's heartbreaking to see glimpses of the other children - a mother helping a girl of eight or so out of her wheelchair and into her bed, a teenage girl lying in her bed alone after her family left on Christmas, a baby boy that we met in NICU who has a twin at home too. It's just not right, children being ill.
Of course, the wanker consultant guy who had us booted out of NICU also had to point out that given Maggie's condition we would often be in the hospital so it would be good to meet the nurses on the children's ward and get to know them. Cheers.
But, you know, I think it's been good for Maggie, the move. And the change of reflux treatment too, it's made a world of difference and is something I owe the wanker consultant for suggesting - the nurses on the children's ward keep telling me about her little vomits during her feeds, that she arched her back a few times and I point out that not even a week ago she was crying through each one, arching her back the entire time, gripping her little blanket in pain. And now, by and large, it's fine, she even sleeps through some of them.
And apart from the first night, she hasn't had sedation since she got there - cuddles rather than drugs and it seems to be doing the trick. She still has unsettled periods at night and is sleeping too much during the day so her body clock is all out of whack but the plan is to work on it, not just to let her continue as she is.
Alice is still just smashing - always bright-eyed, smiling, cooing, mesmerised by nearly everything and so alert. She's a real daddy's girl too - she's constantly watching Paul and what he's up to. And last night she slept from 10pm until 4am - result!
Xmas Day at the hospital. Not as miserable as we thought it would be. Not great, just not wrist-slashingly depressing. And this was due, for the most part, to Maggie being alert and sweet and lovely. It made it all seem a little better.
One of the oddest things about spending the day at the hospital was that we were hungry by early afternoon. I mean, who gets hungry on Xmas Day? So I nipped downstairs to the canteen and got a small takeaway box of turkey, stuffing and roast potatoes. Not much - just enough to keep us going until our proper Xmas dinner later in the evening.
So we spent the day at the hospital with our girls, opening presents and trying to make the best of it. As you’ll see from the photographs, they had some nice things between them. The majority of them courtesy of Auntie Mary and Uncle Bob, all the way from Texas.
A big thank you, by the way, to those of you who got gifts and cards for the girls.
In the evening, we left Maggie for the rest of our Xmas Day at home. Of course, it was dark by then and tinged with the sadness of her not being there. But with all that, I was greatly looking forward to our Xmas dinner. Not just because I like a good roast but because having turkey with all the trimmings was our attempt to have at least a bit of Xmas Day that was normal.
So you can imagine how upset I was when we discovered that our crappy frozen turkey thing couldn’t be cooked from frozen – that it had to be defrosted for 24 hours. Honestly, I almost cried. Just another little thing that didn’t go right.
But salvation of sorts came in the form of a crappy frozen gammon roast thing. And Shannon did an excellent job of putting together a very nice alternative Xmas dinner. Which we ate around 9pm while watching Celebrity Mr & Mrs and necking Buck’s Fizz.
All in all, not a great Xmas. But it’ll be different next year.
See the Xmas Day gallery by clicking the pic (now fixed):
We’ve not been looking forward to Xmas this year. But we decided to make the best of it. Which is why we went out yesterday to buy gifts, fetch a tree and get some food. And it was all going quite nicely until the hospital called (see below).
I keep having dreams about Maggie as an older girl. She’s always sort of okay, although with something not quite right. Last night she was a relatively normal teenager. And the underlining story was that she’d defied all expectations to become as she was. Good for her.
I felt very low this morning. Not just down in the dumps but also quite angry and helpless. Shannon had earlier told me that when she was in the process of re-locating Maggie out of NICU, the doctor who had ordered the move – who she’d only the day before poured her heart out to – walked into the room. And ignored her.
What a horrible cunt.
I think I’ve had enough of expecting things from other people. I think this is why I felt so low this morning: because it’s Xmas and we’ve had this terrible thing happen to us and, to be honest, I just wanted someone to come along and make it all better. Or to just look after us for a bit.
Pathetic, right? But then I always tend to get a bit maudlin this time of year.
When we first walked into the ward where Maggie is now, the sadness was overwhelming. Because there she was, all alone in a room full of empty beds. All alone at Xmas with no other children to keep her company. It was so sad that it made me think that it would make for a truly heartbreaking Xmas story for kids: about the little girl that Santa forgot. Something like that. I may write it one day. But I’ll make it funny.
Things picked up a lot when Maggie’s nurse introduced herself. She seemed to be very competent and friendly and, best of all, sympathetic to our needs. I liked that she sat with Shannon and wrote a plan for Maggie that included all the things that have to be done: the physiotherapy, the speech therapy, the feeding etc. We were then visited by the girl who’ll be doing Maggie’s play exercises with her. She was a bit soppy but very nice and obviously very keen to do what’s right for Maggie.
So by the middle of the afternoon I started to get a sense that perhaps things might start improving. And as a result of that I cheered up a bit.
Of course, it was sad to leave Maggie alone like that. But we’d decided that we deserved to have some kind of Xmas eve. Besides, we still had a tree to decorate and presents to wrap. And a quick drink with the lovely Ben and Julia who came with gifts for the girls.
The plan tomorrow is that we go to the hospital first thing to open presents as a family. Then back home to have our crappy Xmas dinner (we’ve gone frozen this year because we couldn’t be arsed). And then to the hospital again to see out the day with Maggie.
Despite the assurances of three consultants over the past three weeks (including the head of the neonatal unit) that Maggie wouldn't be moved to the children's ward until a) our consultant, Dr Roy, returned in the new year and could hand her over to the pediatric consultant properly, b) we were ready and happy and it wouldn't be rushed at all and c) well, maybe not at all if her surgery was done in the near future and there would be no reason for such upheaval...we received a phone call yesterday at 12pm telling us that this week's consultant had decided that Maggie would be moved between 3-5pm that day.
The reason for such contradictory haste? A bed had come available in the children's ward (which often happens). And there's an expected (not definite) staff shortage over the Christmas holidays. And there's an expected (not definite) influx of intensive care babies (which would have an impact on Room 3 in perhaps a week or two's time). And Maggie's needs are moving beyond what the neonatal nurses can provide (needs which, given her current distress and agitation and sedation amount to feeding her, changing her and cuddling her).
I felt completely blindsided and really, really upset - three fucking days before Christmas, which is already going to be hard enough, and they have to do this to us? We had our sad little plan of going up on Christmas morning with Alice and all going into one of the rooms to have our first little family Christmas together on our own. Sofas, chairs, tea making facilities, even a telly - we could almost pretend it was home. And we could do the same when Isaac and Louie come down. On the children's ward? Huddle round her cotbed and try to find a spare chair to squeeze into your allocated little space because there are no additional rooms.
But beyond this was the sudden change - I know where I'm at in the neonatal unit. Seventy five days there and I'm pretty much autonomous when I go up there to look after Maggie. I know the nurses that look after her, a handful of whom look after her every time they're working and I have come to trust them and I trust their care of her. And now the idea was that I meet 50 more shift nurses, who don't specialise in babies but children up to the age of 16, who don't know Maggie and her likes and dislikes and quirks. I won't have the same easy access to (contradictory) consultants who pretty much come when you call. I won't have as much space and leeway when it comes to accommodating Alice. And I never imagined leaving in this way - booted out after 75 days not to go home happy but to go downstairs to another ward, scared and frustrated.
So we kicked off - first to the staff nurse who told us the news, then to the neonatal nurse manager and then to this week's consultant. A meeting was called right away and after an emotional, desperate, two-hour conversation - with us pointing out the contradictions in this consultant's handling of our care compared to his colleagues, challenging their reasons for the move and the need for it to be so sudden - they agreed that although their preference was to move Maggie that day, they would do everything they could to keep her on the neonatal over the holiday period.
I felt so much better to have that reprieve, to know that although it would no doubt happen and quickly when it did, at least we could go ahead with our Christmas plan and I could have a little more time to get used to the idea of the move and have some more time to meet the children's ward staff and learn their practices.
Then the neonatal unit rang today at 4pm to say that due to critical staff shortages (two nurses calling in sick for the next three day period) Maggie would have to be moved before the 7.30pm shift handover, nothing else could be done for it.
And so she's moved - fucking rollercoaster again. I went downstairs ahead of her to get her cot ready with all of her things so they'd be there for her but I couldn't face actually going with her out of the unit and down the corridors, seeing her wheeled about the hospital. I went for a cry and a cup of tea while they did their handover and went back to her new place and tried to settle in with her.
The saving grace of all this today has been Maggie herself - a change in her reflux treatment yesterday had made a real change in her today. Her physiotherapist noticed it, the staff nurse noticed it - both saying she was like another baby. A relaxed, alert one that barely cried during her feeds, seemed to enjoy the physiotherapy and had a really, really lovely day and start to the evening. It eased my upset a lot to see her so...well, normal. I left her just before 11pm and she was sound asleep after another successful, pretty much stress-free feed.
Only I've just rung now to see how she's been and the nurse told me in a rather off-hand manner that she'd been unsettled since midnight and had to have sedation, only it hadn't really worked that well and I could hear her crying in the background.
I'm sorry that I've gotten behind on the blog in the past few weeks - I was feeling overwhelmed by it all for awhile there. Each day starting and ending with a phone call where I learn that Maggie's been very distressed and needed sedation and in between are the emotional hours with her, laughing at her smiles when she's bicycle kicking, hoping a little crying doesn't turn into a lot, discussing tube feeding and surgery and physio and changing wards, feeling guilty at not spending enough fun, individual time with Alice, feeling guilty at leaving Maggie, staying up late with Alice, getting up early to be with Maggie... it all got a bit much and got on top of me.
But I'm manning up and getting back on top of it now - ready with an update on our girls.
Alice's health visitor is coming to see us tomorrow - a routine appointment we've missed a number of times due to being up at the hospital. I think it's mainly to see exactly how much weight she's put on - with Maggie now coming in at nine and a half pounds I'm thinking Alice will tip the scales at around eleven. Big girl! She also had her first jabs a few weeks ago - we both cried, me slightly longer than Alice - and we discovered that her 'sticky outy' is a bit too sticky outy and is actually a herniated belly button which she would have had from birth - nothing to worry about though and it'll probably resolve itself in time. Now that I know it's actually a thing it seems bigger and more worrying than before!
But she's blossoming, our Alice - smiling loads, cooing, getting chubby legs and arms to match her cheeks, sleeping right now in her big girl cot bed for the first time (so if this is all a bit disjointed, that's why - me popping upstairs to check on her!) and, so the nurses tell us, looking more and more like her dad, who she is completely smitten with. I'm trying to find a balance of doing 'normal' mum and baby things with her - a little trip into town before going to the hospital, etc.
Poor Maggie's been having a tough time of it - because of her distress she's needed a sedative every day for the past two or more weeks and sometimes it's stretched into her days as well as her nights. Her latest EEG revealed much of the same thing as before - that there is abnormal brain activity going on but no out-and-out seizures were noted during the time, even when she was crying during the monitoring. But it probably wouldn't pick up cerebral irritation, which they still believe she's suffering from. She's also suffering from reflux and following an X-ray at the end of last week, we now know that her reflux is coming all the way back up to her upper esophagus, which is quite bad.
The biggest issue right now is her feeding - as she's getting bigger, she's getting better at pulling out her tube. On average she's having it out 4 or 5 times a day, which means the nurses putting it back down 4 or 5 times and that upsets her, understandably, each time. It also makes it more difficult for us to take Maggie home, as each time she pulls the tube out we'd have to bring her back to hospital before the next feed to put it back in.
So the talk is about Maggie having a gastrostomy, where she would be fed directly into her stomach. Obviously our hope was that she would be feeding from a bottle by now but although she's slowly improving with her suck reflex, the speech and language therapist thinks that it would most likely be a matter of months before she could be feeding orally (if she can do it at all). And continuing with the tube feeding for that amount of time isn't really recommended.
It's really, really sad and scary to think about but it doesn't mean we're giving up on getting to oral feeding. If anything, the hope is that the gastrostomy might help Maggie get there more quickly because she'll no longer have this tube down the back of her throat every time she swallows - and because her reflux has measured so badly, they'll also tighten the top of her stomach while they're doing the gastrostomy, which should really help her. And hopefully it will help the doctors be able to pinpoint more definitely when she's suffering from cerebral irritation. It also means that we should be able to take Maggie home sooner, as this method of feeding is much more stable than the tube.
And home's where we're really longing for her to be - to play with her, dance with her, have her all to ourselves. And to be a little freaked out, no doubt. She's been more stable with her oxygen levels and we've been allowed to take her around the ward for little trips in a pushchair, and also just carrying her so she can get stimulation from new environments. The next step is a trip off the ward with a nurse accompanying us and if that goes well we'll be able to do it on our own. Slow progress but progress all the same.
And then Alice can give Maggie a tour, as she knows the sights and sounds like the back of her hand now.
It's been a while since our last post. That's because we've been very busy - what with two babies to look after and work and life and the hospital and Xmas and all sorts of shit.
There'll be a new post soon. In the meantime, here are some recent pictures of the girls, including one of Alice with Dappy, the fella from N-Dubz.
It's 3.15 am. Shannon's up at the hospital with Maggie. I've just finished feeding Alice. I'm waiting for her to drop off so I can go to bed. Sleep? Pah. I laugh at sleep. As does Shannon. We're constantly laughing.
I was going to sort out some photographs and write something about what's going on at the moment. But I'm too tired and fed up with it all.
But here's a thing: Shannon bought Maggie this dopey plastic sheep thing that can be strapped to the side of her cot. It lights up and plays a selection of tunes. A standard baby toy that I've seen a million times before. Shannon played it to me this morning - Twinkle, Twinkle Little Star - and I cried like a baby. Because it reminded me that, despite all the damage and all the crap surrounding her at the moment, she's still just a little baby girl. Our baby girl. It's hard to explain but I bet the parents out there know what I mean.
We were talking about Xmas today (note secular spelling) and have decided that we will have one. We've got the kids - Louie and Isaac - for the new year so Xmas Day will just be me, Shannon and the girls. But, of course, Maggie will be at the hospital. Which explains why we've been avoiding talking about it. If you were going to wish a shit Xmas on someone you couldn't do better than wishing them a child in hospital. Still, I'm sure we'll find a way of pretending that it's all okay really.
Ah, self-pity. In the early hours of the morning. I'll be reaching for the Jack Daniels next. Actually, I think I will. Hold on.
That's better. Jack Daniels on the rocks.
Self-pity *and* self-indulgence. Excellent.
Actually, in lieu of me writing anything meaningful I'll direct your attention to another blog about another little girl with cerebral palsy. Her name is May. She's six-and-a-half months old. Her mother, Stacie (who writes the blog), is American (or was American) and is married to a British fella. So there are a few similarities that go beyond our daughters. Anyway, it's a great blog. It's well-written (almost as well-written as this one), informative and entertaining. Yes, entertaining. Stacie (Lewis) is a proper published writer you see, so she knows what she's on with.
Like us, the Lewis's have their ups and downs. They too have run-ins with medical people. So you can see that it's not just me and my funny ways. Her most recent post is about the crap she got from a pharmacist. A pharmacist! If you imagine what it must be like to be the parent of a disabled child, it'll make your blood boil. It's a good illustration, I think, of how you can just get so worn down with unnecessary crap from other people.
The other thing about her blog is that it gives us a little insight into where we might be in a few months' time. That is, where May is now, Maggie will be soon.
Maggie and May. Maggie May. They should form a band.
Finally, music. I tell you, it's become that much more important and thrilling now that we know Maggie can hear. So this is for her - one of my favourite Beatles songs and one that is often overlooked. Smashing vocal by John. Go on, brighten your day by grabbing two minutes of loveliness:
I spent last night at the hospital with Maggie, to see for myself the distress she's been experiencing that's required sedation. I got there at half ten, with the plan being that I'd do her 11pm and 2am feeds (I've been signed off to do her tube feeds) and then the nurse would come for me if Maggie was distressed.
Turns out the nurse didn't have to come for me because I was there when she was distressed - until just gone 4am, when she finally settled (or so I thought). The first feed was fine and she slept straight away but awoke at 12.3oam crying and the next hour and a half was spent dancing, singing, bouncing, cuddling, patting and rocking - and it was relatively successful, in a edgy, precarious kind of way. She'd stop crying, have a little think about what I was doing, lead me to believe that it was working for a few minutes and then go back to crying. It was exhausting and upsetting and desperate - and sometimes, like her happy little face when I did the bicycle kicks I saw Paul do with her, thrilling and absolutely lovely.
I felt like I was proving my point - that surely cerebral irritations wouldn't always happen at the same time? That maybe sometimes what she needed, and what unfortunately the overworked nurses (Room 3 is now packed with babies and the nurse that's looking after Maggie is also looking after up to 4 other babies) couldn't always give her was more time and attention to settle her, rather than sedatives?
But then we got to 2am - poor little Maggie lying on her tummy for her feed (usually her favourite position) and crying into her cot non-stop. And this time I couldn't pick her up and jounce her around because she'd probably be sick so all I could do was pat her back and bum and sing to her and try to distract her with all her crinkly, noisy, brightly coloured toys. Nothing worked, for even a minute. And the real killer is that because she's tube fed, the food can't get down when she's crying, so then she's getting hungry, so she gets even more upset, and even less food gets down, so she gets even hungrier.
It got too much to just watch her so I carefully got her out to hold her and eventually she settled down enough that I thought it would be safe to go to bed. The next thing I knew, the nurse was knocking at my door at 5.30am saying that Maggie had been even more distressed for nearly an hour and the nurse had tried all that I had done and the doctor had reviewed her and felt that she needed the sedative in order to rest properly and ease what was probably either a fit or cerebral irritation. All that effort and we still ended up in the same place. I could've cried if I wasn't so tired and emotionally worn out.
This is how we arrived at the picture below - the sight of Maggie having another EEG was what I was unexpectedly greeted with when I went back to the hospital. I've gone back and forth and back and forth about including a picture like this here, and Paul's often edited out any photos of Maggie looking 'not normal', but it feels like we're hiding the fact that this kind of thing is what is actually happening to us, and it's what's going to be 'normal' for us when it comes to Maggie - nervewracking, heartbreaking scans and tests and examinations on our little baby girl who is very, very ill.
So ill, in fact, that when I stay over at the hospital, Maggie's not even allowed to stay in the room with me, which is just down the hall. (That's where Paul's post awhile ago about asking about Maggie coming home came from, by the way - a protective gesture because I was so upset the first time I was told this. Please do ask whatever you want to ask, about her coming home or anything.)
The EEG is to try and determine, if they can, if it's abnormal brain activity - seizures - that's making Maggie so distressed. If they see signs of increased seizures, the next discussion will be about treating Maggie with anti-convulsant drugs, which we've been trying to avoid because they'll basically just knock her out. If they don't see them, it's back to the drawing board - is it reflux? Colic? Or lower level cerebral irritations that don't warrant the drug therapy? The first two are too much to hope for so I'm pinning mine on the last one.
And Alice? She deserves a dedicated post rather than being a little postscript, so come back tomorrow (or the next day) for that.
I keep having these little moments of joy every time I think about the fact that Maggie can hear. Although we knew the implications of what it would have been like had she been deaf, it hadn’t really sunk in. It’s only now – now that we know she’s okay – that we’re willing to fully contemplate how terrible it would have been.
It’s just sheer relief. One less thing we have to worry about.
But while Maggie being able to hear is a real cause for celebration, we still have the awful reality of her condition. And that includes accepting that discovering she can hear is a kind of false progression. Because the thing is, she never was deaf. It’s not like she’s recovered her hearing or made a fantastic, unexpected leap. She is as she always was, despite failing her hearing test the first time round and causing us no end of worry.
I say that not to take anything away from all that’s positive about her being able to hear. I say it because it’d be wrong to think of this as an indication of progression or an indication of how things might not be as bad as first thought. If you see what I mean.
And no, that’s not just me being a miserable git. Because the one significant thing the news gave us was a massive lift. Something that will help us to cope a little better with everything else.
Talking of which.
Maggie’s been having a few bad nights recently. During the early hours where she, apparently, becomes distressed beyond the point where she can be comforted. There may be a number of reasons for this. It could be acid reflux, it could be cerebral irritations, it could be wind. Disappointingly, it’s usually treated as cerebral irritations which means that she gets a dose of chloral hydrate to get her to sleep.
The knock-on effect of this is that it makes her drowsy well into the next day. Which makes her less alert and less responsive to things like physiotherapy and speech therapy - as well as not being awake enough to just get her brain going in the way that a normal baby’s would. It’s a bit of a vicious circle.
It seemed to us that on occasion she’d been given the chloral hydrate a little too quickly. One night we rang at 2am and were told that she was settled and fine. And yet the next morning we were told that they’d had to give her chloral hydrate at 2.45am. So within 45 minutes one of the nurses had decided that she’d been distressed for so long that she needed medication. Nonsense, obviously.
So today Shannon had a word with one of the consultants. This resulted in deciding to always thoroughly explore other reasons for Maggie’s distress before medicating her. So maybe first a dose of paracetomol or antacid to see if that helps. This conversation also resulted in Maggie being put back on to three hourly feeds – again, something that will encourage her to be more awake and alert during the day.
On another note, I received a reply yesterday to an email I sent to Sir Terry Leahy, Chief Executive of Tesco. I wrote to say how disappointed I was that every time we go to his supermarket, the disabled parking spaces are full of cars belonging to able-bodied people.
The reply (from his assistant) was thorough, professional and extremely courteous. They outlined a number of things they do to tackle the problem and hinted at some newer initiatives. They also spoke to the manager of our local store who said that while he wasn’t aware of any current problems, he would definitely look into it. Interestingly, they said that Tesco staff are often abused when they try to tackle these offenders. Can you imagine that – having the brass neck to not only park in a disabled spot but to also aggressively defend yourself when caught out? Amazing.
We went to Tesco this evening. Of the six cars parked in the disabled spots, only one belonged to a disabled driver.
But this is one of the things I worry about: that having a disabled daughter will make me even more conscious of the fact that I share a world with selfish, stupid twats. Which’d be fine were it not for the fact that I go out of my way to seek them out - just to confirm that I’m right and to wind myself up. I should get a grip.
But, y’know, despite all the twats and the chloral hydrate and all that I said above about it being a false progression, knowing that Maggie can hear really has made me beyond happy.
Alice, by the way, is thriving and fine and lovely. She was up late with me last night watching a documentary about James Brown’s performance in Boston after the assassination of Martin Luther King. It’s easy to forget sometimes but there really was no one to touch him. Michael Jackson? Bollocks. Have a look at him below doing his famous stricken routine which results in him having to be covered with a cape and escorted off the stage. Absolute magic.
When Maggie gets home we’re going to have a full on session with James Brown - just to give her ears a real treat.
As Tom said, when I told him: “Get the hip hop on her!”
At last, some good news. Some great news, in fact. Maggie passed her hearing test this morning.
I did think about bunging a load of exclamation marks at the end of that sentence but, really, mere words (and punctuation) couldn’t begin to convey how happy we are about this.
The main thing is that she can hear. But the joy of that is made all the sweeter by the fact that it’s so good to have good news for a change. And it’s significant good news too.
The audiology nurse reckons Maggie’s hearing will be perfectly fine. At the moment she can hear speaking voices at a normal level. She’s not quite picking up on whispering type levels but she thinks this may be due to a spot of glue ear.
Of course, this means that she’s better equipped for learning and progress - another channel for brain stimulation. Like I know what I’m talking about. But I’d imagine that it makes it all a bit easier. And let’s face it, on a purely practically level it’d have been a pain in the arse her being deaf as well.
But the real joy comes with knowing that she can listen to music. And to me shouting at the telly.
I know it’s a bit corny (and literal) including a song called I Can Hear Music in this post. But it is genuinely one of my favourite songs. The Beach Boys’ version anyway, featuring Carl Wilson on lead (who was also responsible for the peerless vocal on God Only Knows). What a voice. It makes me so happy to know that Maggie will be able to hear it too.
And this. Imagine going through life not being able to hear something as great as this:
Maggie is having her hearing test tomorrow morning - the more specialist, in-depth audiology one that should give us the final verdict on her hearing ability. And I can't really think of a time when I've been more frightened - because what we want so badly, what we've been willing for so hard, could just not be. Given everything that could be wrong with our little girl, this would be a little balm - that she could hear music and it could be as big a part of her life as it is Paul's, that she could hear our voices and be comforted by them (and later be annoyed by them), that it could help her development in so many ways. But for her not to be able to hear...well, it's just not fucking fair given everything else she, and we, will have to go through.
We've put it out of our heads these past two weeks, since she failed the two initial newborn hearing screenings. Except there have been little things, little instances where we thought maybe...her startling at a clipboard falling on the floor, turning when the speech and language therapist crinkled some paper near her ear, several different people telling us how often babies do fail the initial tests and can hear just fine. We've been trying to prepare ourselves for another negative response - given the brain damage, the commonality of hearing loss/impairment in situations like Maggie's, the initial tests - but it's just not working. We want it too much.
This blog is about our twin girls, Maggie and Alice, who were born prematurely in October 2009. Alice is fine. Maggie, through complications during labour, is very severely disabled. This blog helps us to keep in touch with all those people out there who we couldn't possibly keep in touch with on an individual basis. It also just helps us. Please feel free to comment and/or email (address available in 'View My Complete Profile' below).
I'd forgotten, until reading the latest collection of the original EC Segar Popeye strips from the 1930s, that there was a character called Alice the Goon. She started out as quite a hideous and frightening zombie-like figure - a henchwoman for the evil Sea Hag - but later became quite loveable and motherly.
