Monday, December 17, 2012

Independence.

Woody is sitting in his pram, squirming, calling out and trying to get out.

" They don't now how lucky they have it do they?" she says to me.

" I wish someone would push me around all day and feed me" she says with a giggle and another customer agrees.

I don't say anything. I bite my tongue. I think that maybe I would have said something similar in the past......that is before Cooper.

It made me particularly sad as I had had a tough weekend with Cooper. I am really struggling with him lately. I feel so out of my depth parenting a boy, a seven year old, an eldest son, a son with CP.

I wanted to reply to this youngish girl " are you fucking kidding me?" " really you think having your independence limited and having to be pushed around would be enjoyable?" " really you think you would like to have to rely on others to get your nutrition each day?"

Each day when we sit for breakfast I sit inbewteen Woody and Cooper. I spoon weetbix into Woodys mouth then into Coopers mouth. One side is a one year old, the other side is a nearly eight year old. Then I quickly shove one into my own mouth and repeat the process. Six days a week. Andrew does the seventh.

Its almost like a kick in the guts each and every day and I am unsure why it really gets to me. But it does. A few things do like that and dressing.

" dont worry Mum, Woody can nearly feed himself and then you can just feed Cooper and enjoy your breakfast" says Pepper at four after setting the table and getting her own cereal, pouring her milk and chatting away while eating so effortlessly. She knows in my eyes that I have these moments when things should have been different but they are not. She knows my heart aches and she gives me a little grin as if trying to make me feel better.

 

Cooper tries so hard to feed himself, its a slow slow journey to independent eating with cutlery.

 

So maybe Woody is lucky as a baby to sit in his pram and suck on a yoghurt so easily. But he is also lucky to be developing so typically soon to be feeding himself with a spoon, like his sister but unlike his brother.

 

 

17 comments:

  1. Hugs Bron - for me it's not feeding but showering and dressing that gives me those moments - now that Emma and Audrey are so independent at those things.

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  2. Oh Bron...I used to think the exact same thing. MM has progressed to feeding herself now which has made a huge difference. But now like Alison it is the dressing part.

    I bite my tongue with the comments I get about MM when someone says.."Oh the poor thing" as they watch her as she is cruising around in her walker...grrrr

    Big hugs to you xxx

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  3. I'm sorry people make stupid comments like that... I get it too.

    "Wish I could zoom around in a power chair all day!"

    No you bloody don't.

    Bit different but my two siblings are off for a four day holiday on the Gold Coast tomorrow. Just the two of them. I can't go on many of the rides, the beach is terrible for wheelchairs, and I knew they would resent having to push me around, so I simply decided not to go and will be here in Melbourne with my parents/grandmother instead. It's really getting to me for some reason. I guess these days I don't get many reminders of my limitations - I can look after myself when it comes to everyday stuff, but that is a sore reminder I can't do everything and it really hurts.

    Anyway, thinking of you and Cooper

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  4. Thank you, Piper, for putting the light at the end of the tunnel. Bron, I feel your heartache. We have to be so "on", never seeming to mind that the help our children need drains us. But sometimes it does. And that's okay.

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  5. Pepper is a gem. It's ridiculous when people say that, I hate it too. I mean, really? Your meals sound like mine! It is hard and sometimes just the constant weight becomes so heavy. Today I tried to have Seb walk into school in his walker and he just couldn't do it, his left leg was dragging and it was taking forever and I felt so bad how frustrated I was getting, though I wasn't showing it to Seb as I was cheering him on instead. Some days are just so much harder than others. I'm glad you are writing about it though and hope it helps lift the weight a little.

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  6. Bron, I can feel your frustration reading this post. Pep is so caring and Coops is so determined, he will get there. Love Jess xo

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  7. *wiping away tears* I wish you didn't get that feeling in your stomach...I hope you can remember at these times the incredible things he has been able to do....he is amazing and it's because of you- you are the best mum I know! . Xoxo Amy

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  8. Oh I can't even see through my tears as I am typing this. Some days it's just so hard, I know.

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  9. Peppa, you are one beautiful little girl that brings a smile to my face. Bron, I so wished we lived closer so I could give you a big hug and we are living the exact Weetbix moments with Harvey and Pippa. I think of you often, Naomi xxx

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  10. Bron, I honestly feel like you write what I'm thinking sometimes....I have been feeling quite down about everything lately, and that is one of the things that I think about often....Audrey is finally feeding herself her nowadays and we are still helping Max. Though Audrey is naturally trying to help with things, like passing him back his biscuit at lunch when he drops it...sometimes she eats it herself though ;)
    Pepper already sounds wise beyond her years....What a beautiful daughter you have raised, I can only hope Audrey will be even half as sweet.
    xxxx

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  11. It is hard Bron. And I'm sorry that it is. Unless you have a special child, others don't understand. But we do. Thanks for sharing. Glad we connected from Love That Max.

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  12. Sometimes comments sting... but I try to remember not everyone has the same insight as us. Be sure to ask Jenny about Missy's Neater Eater to see if that is something that Coops might be able to use - even for just some of the meal. Hang in there, you are all awesome - don't let people who don't know that get you down. xx Gina

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  13. I get it Bron. It won't be this way forever for me, but it will be for a long time, I sense. I still can't get anywhere with Georgia self feeding, and for nearly 5 years I have spooned everything into her mouth, though she does finger feed herself, and even that has been a huge burden lifted. But the dressing. I really can't see her being able to dress herself for years, and sometimes I just feel so tired. The other three girls just go on and get more and more independent, turning on the shower for themselves, doing everything they need to do without assistance, and then, with Georgia, nothing changes. Even though I drag that walker with me to different places four days of the week (it goes to kinder with her, and daycare - alternate days though), and next year it will be five, and some days I really bloody resent it, I am grateful that the aides etc put the AFO's on, as they have damn near tipped me over the edge. It's the whole no end in sight thing that makes you really feel like you are going to go mad during the more difficult, or tiring periods of your life. Hugs darling, and I hope I don't sound like I am whinging too much....most of the time I just take it in my stride, but this post struck a chord with me.

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  14. You are so beautiful and I completley understand. xxxx

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  15. Now words other than I get it. Big Hugs to you xoxxx

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  16. My needs are what are generally described as "total care" hereabouts - I need help, sometimes from two people, to do everything.

    Now, at 27, I am totally independent from my parents and enjoy true independance of choice: I can choose what to do, how, when and where to do it, who will help me and how they'll help me. That's independance, at least I reckon that's the only kind that really counts. Choice, and control. Cooper is young, there are some more physical skills he will learn and a LOT more he already has that he'll get better at - but what remains, if there's anything that remains, at the end - he'll be independent with that, too, because he will take the reins, direct his own support, and enjoy full choice also. He could probably start fairly soon (in fact I suspect he probably already has) in learning to work with people who are helping him by telling them what he needs and/or wants them to do.

    I'm chuffed to see someone already mention the neater eater - several of my mates with CP have one (including one guy who has the new joystick-controlled one!), they're a neat bit of kit.

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Thankyou for leaving a comment and sharing our journey. Lovely to meet you via blogging and thankyou for your words. Bron

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