Friday, 22 January 2010


I'm really, really looking forward to my sister, Mary, coming over - just a few days away now and hopefully Maggie will be home for the afternoon to welcome her. It'd be nice for her first time with the girls, her new nieces to add to our lovely niece Gretchie (and nephew Sammy!), to be outside of the confines of the hospital. Our old host brother, 'Swedish Daniel', is coming over for the weekend too - another pair of hands to put to good use in the caring of our girls.

These visits couldn't come at a better time, especially after the sobering visit from our community health nurse this morning. She's nice, very sympathetic, championing our corner and getting things under way...but the reality of the gastrostomy is slowly becoming just that. I was looking at Maggie's perfect little baby tummy last night, getting sad and upset about what's going to happen to it - what has to happen to it to take care of something as simple, natural and important as eating. Sometimes I find it hard to take it all in, to really believe that this is going to be my life, and my life as a mother. I was rather late in coming to it but I always knew I wanted to be a mother, and I was pretty sure I'd be a really good one. I hope I still will be in the end, but it's not the kind I wanted to be, not the kind I imagined - and the sheer, complete, helpless unfairness of it all has really been getting to me this week. Getting to me...the truth is it makes me want to scream, cry my eyes out and just give up.

Luckily, the feeling usually passes quite quickly - when I see Alice, when I can comfort Maggie, when I get a hug from Paul. But talking today about all of the things we'll need - boxes and boxes to be delivered every month with the disposable tubes (6 a day, every day) and accessories, food, medication - and the struggle we'll face when it comes to finding quality childcare for Maggie, and returning to the hospital to replace the button, and trying to juggle physiotherapy, speech and language therapy, the respite and care services of the local children's hospice, the home respite services through the hospital, the health visitor, specialist health visitor and community health nurses while still doing all the normal things with Alice and trying not to notice that the health care professionals keep talking about Maggie's gastrostomy in terms of years rather than months...well, I've had a right pity party day.

So, the arrival of family and friends is just what I need to pick me up, re-energise me and get me focused on my lovely little girls instead of myself!


  1. I love reading your blog. You are both so open and honest. I read books about disability for my work, but it helps enormously to keep being reminded of the reality. The theories are all very well, and have their place, but hands-on stuff is the real world, and you are in it, and you are doing so brilliantly.
    My very best wishes to all of you.

  2. xxxx

    Russell and Juni

  3. You are, and you will continue to be, a fab mum Shannon. Some many of your words are so familiar, I really feel for you. I know it's such a mountain to climb. It is unfair.

    I'm glad that you have friends and family to visit soon. Enjoy them and let them do the work!

    Much love,

  4. mary is on her way!

    she, and i, are very excited!!


  5. Looking forward to seeing you all next Saturday - just let me know when. Tara xxxxxxxxx

  6. Never feel bad about having a "pity party". You have enough to go through without feeling guilty about your natural reactions to a very difficult situation. Cry all you want, complain all you want... whatever you need to get you through this is exactly that... what you need. Give yourself some love.

  7. You have both been so strong through all of this, Shannon - better late than never, and you are, and will be an amazing mummy, you both have so much love, your girls are really very lucky.
    I cant even imagine what you are going through or how you are coping so well, stay strong, take all the help that is offered and sometimes just try and think about yourselves,

    Much love

  8. Great to hear Sister is visiting. Nothing like sisters! They are the best. We are thinking of you all everyday--selfishly feeling helpless on this side of the pond. It's a blustery, rainy day in NYC.

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