Tuesday 9 November 2010

A Break

Hello.

Today we took Maggie to Quidenham for a couple of days. It was, as always, really hard saying goodbye. We miss her so much when she's not here.

That said, it's been very difficult these past couple of weeks. Her sleeping has got worse. Shannon and I have barely slept. And as well as being exhausted, I've been getting terrible headaches that I've been unable to shift. On top of that, I think I might have a stomach ulcer.

Poor me.

And poor Shannon who has been feeling extremely delicate and sad and worn out. She's at her wit's end.

We so desperately need this break. For both our physical and mental health.

Maggie's problem - I think - is that she's been suffering very badly with wind. She breathes poorly and snorts and gulps all the time. So she swallows too much air. The wind doesn't just cause her pain, it causes her to vomit - which she's been doing during, and after, every feed. So despite her being on the new higher calorie feed, she's still not putting on weight. Which means she doesn't sleep properly - something that's extremely important for her development.

On and on it goes.

69 comments:

  1. Blimey mate - is there nothing friends and assorted odd-bods (like me) can do to help? It sounds as though you are all having a dreadful time. While I can understand you missing Maggie when she is at Q, it seems that these days away are essential for all of you (a small reason to feel good about them, not bad).

    What do you need most of all - aside from her Doctors focusing on the fundamental issue of helping Maggie sleep, eat and grow?

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  2. Hello. I've found you by accident today, but I'm really glad I have. I've been reading through some of your posts and I am astounded at your difficult path and how bravely you tread that path.
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  3. It is almost impossible for anyone to know what you both (and the rest of your family) go through on a "normal" day. I feel guilty not to be able to offer some words of wisdom from personal experience, but I can say that you are both doing something to be proud of and are true heroes. I just wish there was a magic wand that I could wave or some meaningful words or actions of help that I could offer.

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  4. I hope you both get a well deserved break, sounds like an absolute nightmare. I wish I could offer you practical help instead of just words all the time, because that's what you need more then anything!

    ReplyDelete
  5. I'll echo those other words. Wish I could be some help, but too far away. Suffice it to say, I'll be over to see you again and hopefully I'll be able to look after Maggie for a couple of hours at least. THINK I can be trusted.

    Loads of love to you all

    Sally xxxxxx

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  6. Hi Paul & Shannon -

    I'm a friend of Kate Ancell's (from ancient history) and she asked me to pop over to your blog to see if I have any advice to offer. You see, I have a special needs son (25 wkr b/w 486gr) who is now 7 but 6 years ago I was pretty much exactly where you are today. I spent last night reading your blog from the beginning. I cried, I railed, I felt your hurt, anger, loss, desperation... I would like to send you an email directly because what I have to say is far too lengthy to post here. I have some ideas I'd like to share with you - some things that worked for Andrew and some that did not, but might for Maggie. Believe me, I remember those sleepless nights all too well. And what it was like to have a baby who was miserable. I think you're well on the right track to helping Maggie... more on that later, as well.

    For the rest of you who may read this post... You're right. There is nothing you can say or do to "make it all better." But there ARE ways you can help. Make a casserole or a soup and take it over so that cooking is one less thing for Shannon to worry about. Better yet, make a double batch so they have one to eat now and one to freeze for later. Help them with laundry (that's a big one!), run an errand for them, or just pick up milk, eggs and bread at the market and drop it by. Any "normal" mundane task that you can take over for them will be one less thing Paul & Shannon have to worry about. Most parents of special needs children will not ask for help, even when they desperately need it. Mostly because they don't know what kind of help they need! :)

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