At last, from Shannon

I've been more a follower of this blog than actually writing it...something I'd like to remedy, and regularly. But if you're reading this, you probably know what I'm like, so we'll see what happens.

The thing is, I've been finding it hard - overwhelming, actually - to get anything done that isn't what's immediately needed for Maggie and Alice, because that alone is so time-consuming and stressful and difficult to do. 7am-9pm, with probably a 30 minute slot when they're both either asleep or happy enough to be left alone for a little bit. We eat dinner, it's 10pm, tidy up a bit, and it's 11pm. Go to bed and fall asleep, it's 12am - with Maggie waking around 2am to be fed, back in bed for 4am. We haven't had a stretch of unbroken sleep longer than three hours in weeks and weeks, months. And it's really starting to take its toll - I didn't realise how much until Maggie slept through one night and I got six hours straight. And I felt so much better for it - more positive, less vague and teary, more capable, just more human.

Because there's so much that needs to be done that isn't getting done - writing/calling/emailling people, sorting appointments/sleep systems/equipment, sorting going back to work, sorting possible childcare, sorting the house, shopping etc etc etc. So much that I just feel paralysed and get nothing sorted, not even the stupidest, slightest thing like having bloody food in the house. What to have for dinner? I can't think what. I really can't - I just draw a blank. Paul's so much better with this than me, even though he's got even more on his plate - it must be really fucking annoying to have me flake out like this all the time. I'm really sorry to everyone that's waiting to hear from me - I've just been overwhelmed by it all.

It's been a really hard month, six weeks. Maggie's been ill nearly constantly - starting with vomiting old blood that could have been gastroenteritis or esophagitis from her reflux. She had that twice and as soon as it passed she got a cough - sounds minor enough except that for Maggie a cough triggers more vomiting, which we didn't really think possible. Then she got a stomach bug - more vomiting and a week and a half of diarrhea that required rehydration treatment because it was combined with the vomiting. I've spent hours and hours at the hospital with her, each time leaving with not much more than a hopeful shrug that things would get better.

She's been losing weight when we so desperately need her to gain it - it makes me feel so helpless and frightened to see half of her food pour out of her mouth, and nose, knowing that it's stopping her from gaining weight, stopping her from getting the nutrition her brain urgently needs. And, unsurprisingly, she's been so unhappy, constantly tired and upset - which puts a stop to her physiotherapy, speech therapy etc. It's very wearing, an unhappy Maggie - it's also been really hot, which doesn't help. She was sleeping in just her nappy and I found it really upsetting to see her like this - she's so thin and stretched, with thin and stretched arms and legs. And it was rotten, rotten luck that she was at her worst this past week when Louie and Isaac were down. Luckily Alice was there to save the day as much as she could and salvage their opinion of their little sisters - completely smitten by Isaac and Louie and smiles all round.

But maybe, maybe, Maggie's finally on the mend. She slept through until 5am a few nights back, which we thought was an indicator of her getting ill again because that's the only reason she's slept that long before. But then she did it again - and woke up really happy and smiley. And she wasn't sick at all - it just stopped. Of course, a big part of me worries that this means there's something else going wrong that we just don't know about yet - how can it just stop? After so long of being so sick with so many feeds? She slept until 7.30am yesterday morning, and again today. One of our carers said that it could be just complete exhaustion from being so ill for so long...I hope it's more than that. I hope Maggie's finally turning a corner, getting on top of all the dreadful things her little body keeps getting thrown at it. She deserves a bit of peace and happiness, my poor little girl.

* Photographs of our week with Louie and Isaac. You'll note that in these photos Alice is wearing the greatest T-shirts in the world. The fact that they make her look like a boy is beside the point. They're the greatest T-shirts in the world because they have Spider-Man on them. You should have a T-shirt as good...

And isn't it lovely to finally have a post from Shannon? Give her a big hurrah and hugs!