Wednesday, 18 January 2012

Progressions and Setbacks

It’s been a while since I wrote anything about Maggie and how she’s getting on.

Over the past few months she’s made progress in some areas and had setbacks in others. Which is to be expected, I suppose. Overall, she’s a lot happier and more contented. For the first two years of her life she seemed to always be unhappy. This, we suspect, was largely due to her terrible reflux and digestive issues. She still suffers with all of that but to a lesser degree.

Her general happiness seems to have also been affected by her growing awareness and understanding. As she now responds better to various stimuli, she’s much easier to placate. Everyone who sees her is impressed by how well she communicates and how much she understands. She’s often an absolute pleasure to be with. The only drawback is that she requires – demands – constant attention. Although she is happy for short periods stuck in front of the TV watching Waybuloo. And only Waybuloo.

Her sleeping has been erratic. For a short while she was sleeping through the night. But for the past five months she’s been waking up in the early hours, often for up to two hours, This means that Shannon and I have to take turns every night. Being awake with her in the early hours is still an awful, crushing experience. As I’ve said before, it’s during those times – when we’re tired, when there are no other distractions but Maggie – that it all comes rushing in. The sadness, the fear, the anger, the realisation that she will always be like this. It’s at those times that I often consider just giving up.

She’s made some good progress with eating. We took the rather bold step of deciding to just shove food into her mouth. I felt that the worst that could happen was that she would choke to death or fill her lungs up with food. But as it happened, she coped remarkably well. Her speech therapist assessed her while she was eating and concluded that her swallowing was sound. So there was no need for the surgical assessment that had been arranged. In terms of the actual eating, it basically consists of us pouring diluted custard into her mouth from a special cup. How well that goes depends on her mood and levels of hunger. But on the whole, it’s been a success. We never thought she’d be able to do anything like that. It gives us a little hope for her future.

Her weight continues to be an issue. A few months ago we were very pleased that she’d put weight on. However, she seems to be struggling again. There are moments when we’re changing her that we’re horrified and saddened by how thin she is; her ribs showing, her skinny rope-like legs, her scrawny arms. I think it’s time we looked into, again, her food intake. I suspect that part of the problem is that she was destined, like her sister, to be a big kid. She’s getting very tall (or, rather, long) but not very wide. Unlike a lot of kids with similar conditions, she’s very active. So she burns a lot of calories. Of course, her activeness is often due to spastic movements. Or maybe they’re not. It’s difficult to tell.

She’s been getting a hell of a lot from the various places she visits every week: nursery, school for parents (at Scope) and the Hamlet Centre. Those take up three mornings of her week. She’s very responsive while she’s there and, again, the people who see her are always impressed by her levels of understanding. Above all that is that she obviously loves going there.

I think that’s one of the things that we need to be more aware of – that everything she does shouldn’t always be centred around issues of care or development. It’s equally important that she’s just happy, that she has a nice time, that she’s treated – as far as possible – like any other little girl.

She loves – absolutely adores – rough play. Being swung around or thrown up in the air elicits squeals of delight. It’s just such a lovely thing to see and hear.

She’s enjoying, and sitting better, in her chairs. Although she still screams hysterically whenever we take her out in the car, however short the journey. So she can be taken out in her special pushchair and we don’t always have to assume that it’ll be a nightmare. Sometimes it is. The drawback to this is that Alice then has to walk. Unless we’re both taking the girls out. A simple trip to the shops is often fraught with all kinds of logistical problems. It’d be funny if it wasn’t so frustrating and difficult.

And there: Alice. She’s just something else entirely. Still the happiest girl on earth and so bright and clever and funny and lovely. No trouble at all. She deserves much more attention from us than she currently gets.

Overall, I’d say that things are a little better. It’s hard work still – very hard work – but routines and little progressions make it seem easier. Sometimes. At other times, it’s all too much. We still have moments when we just can’t believe that we have a severely disabled daughter. We look at Alice and can see how Maggie should have been. We still feel robbed and sad and lost. I imagine those feelings will never disappear – it’s just how well we cope with them.


  1. This makes me feel happy yet so sad - happy that Maggie is happier, at times, so sad at what she and you have lost.

    Two things seem clear - Maggie deserves all the encouragement she can get, since she obviously responds to stimulation. You and Shannon also deserve more support.

    Best wishes to you all,


  2. Awww she's very lucky to have you guys, you work so hard, and are so realistic, yet motivated. She sounds like she's doing amazingly, all things considered, and lovely to hear how happy Alice is too, glad to see an update, big hugs to you all xxxxxxxxxxxx

  3. THese kinds of posts from you always make me cry, Paul. For a number of reasons. First being- none of you deserve this. Not that anyone deserves the challenges of a disabled child. But Shannon's pregnancy went so well and she did everything right...and because of stupid human error, Maggie gets this life. Secondly I cry because I am too far away to do anything to help out. If money were no object, I would be there in a flash, learning to care for Maggie so you guys get more breaks or can just shower Alice with constant attention without worrying about Maggie. Alice is a delight and I would say she inherently knows you need to tend to Maggie much more so she is clever enough to be content on her own when she needs to be.

    Everyone we know comments on not being able to handle what Bob and I have....which is two 3 month old babies who are healthy and sleeping great. I wish they all knew you and Shannon because I would like to tell them that what I am doing is nothing compared to how you guys do. I will try to pinch myself (very hard) when I start to gripe about Lily or Ronin having a rough night or bad day.

    I love Maggie's spirit and determination to do as good as she can. It's like an F- you to the damn doctor who told you to brace for her not even making it.

    I miss you all a great deal!

    Mary, Bob, Lily, and Ronin