Why I’m abandoning therapies for cuddles

Posted on Jan 4, 2013 | 10 comments

More of this! (May at six months old)

At some point, towards the end of 2012, I fell into a therapy funk. I stopped doing as much physio at home as I should. I stopped giving May a spoon to hold during her meals. Stopped showing her bright lights in our darkened bathroom while she took her evening bath. It wasn’t conscious. I didn’t even realize about the spoon until someone at May’s nursery asked me about it.

“No,” I said, feeling a simple truth slip from my mouth. “I don’t do that anymore.”

But, why? Why has this happened? I think it is the surgery.

It was shock to learn that, despite everything we have done, there was nothing that really that could have been done. I am suffocating under this idea. I haven’t written as many posts because I think: what is the point any of the stuff I’ve been doing and, furthermore, of encouraging other people to do the same?

It is not enough to do more. It has to work. There is a realism there that is uncomfortable for many people to deal with. May is not like all disabled children, cognitively she doesn’t understand all the enriching activities we do with her. That is also uncomfortable to accept.

But, if it doesn’t work, it isn’t worth it. May deserves more than being stuck in the car and shuffled from expert to expert. She needs to be challenged. Yes. And we will continue to challenge her. But, not for the sake of it. It must work.

So my New Years resolution this year is not to do more, it is to do less. To spend more time reading to May, cuddling her, tickling her, singing with her and all the things she loves. And, doing less of the things that I’m not sure benefit her and do because I feel I must.

I must not.

10 Comments

  1. Mama Lewis, you are a wise woman. I had a very similar epiphany over Christmas when I realised how much happier and closer we were as a family and I worked out it was because we hadn’t been dragging ourselves from therapist to doctor to hospital but just having fun together. No one was telling us new and dreadful things about Henry, he was just a little person and we were rolling around on the floor together being silly. Bounce that baby, read a big fat pile of books to her and drag her around in the bilbo. Do they make them for adults? I wish they did…

    • I’m glad it’s not just me. Isn’t it a relief to just have fun? May loves it too, it isn’t just me :)

  2. Well put Mama. My mum had similar thinking many moons ago when my wee sis (who always hated to be messy and has four-limb affecting CP) was putting all her energies into trying to feed herself-ending each meal exhausted, messy and being fed the remaining stone-cold food. My now married design graduate sis enjoys many romantic meals out sat side-by-side with her beloved, with him feeding both of them, enjoying her meals fashionably clad and clean. Choose your battles and win the war or you know, gain the peace, depending on your outlook. Xx

  3. Stacie, you have always known what is best for May. And I think if you are convinced that somethings just don’t work then stop for awhile until you feel it might help again.As far as the surgery, I wouldn’t let all your effort be ruined by the fact that May needs further surgery. Sometimes all of us are caught off guard and then we regroup and things work better. I am holding May in the light as she goes through this new surgery and comes out the other side.

  4. Stacie, don’t see May needing surgery as a failing, or something that could have been prevented. It’s (just) something that May now needs in order to help her to continue to progress after her recovery, e.g. using her walker. I understand that it’s never something that any parent would want their child to go through, but I’m sure it will be beneficial for May in the long run.

    On a seperate note – the therapies etc that she needs are only to meet her ‘additional’ needs. The cuddles, tickles, fun, play and bouncing are the needs (and rights) of every little girl – kids learn through play and can be challenged through play, these things will be beneficial to May too…keep up the fun!

    You are an amazing Mummy, remember that! :-)

  5. I so appreciate your honesty being a 21-year-old with CP I sometimes feel like my life revolves around therapy. I love your philosophy of do therapies if they work.

    Nisha from South Africa

    • Thanks! I guess the hard thing is figuring out what works!

  6. Thank you (as always) for your candor and for your willingness to put hard truths into words. I am an elementary school music teacher, and I avidly read each and every one of your posts. I have learned so much from your perspective on your experiences with May. Reading your blog has truly contributed to my growth both as a person and as a teacher. I can only imagine that there are many other readers who, like me, deeply appreciate your writing but simply do not pipe up in the comments. I hope this thought can offer some small amount of encouragement, when you find yourself wondering what the point is of writing your posts. I think you are a fantastic mama, and I’m always rooting for May.

    • Thank you, Alice! What a lovely comment! And likewise, I am always pleased to hear from teachers – and May is especially fond of music teachers, as you are probably aware.

  7. I echo what others have said above, Stacie. You are certainly not alone, however. Many, dare I say, most parents learn to cull the methods to a personal level of lifestyle accommodation, perhaps satisfaction, possibly acceptance while incorporating their child’s needs into the family. IMO most of parents need to experience the phase of doing everything recommended or possible, at least in the beginning.

    You might find reading through this blog interesting:
    http://www.prayfornathan.org/blog/of-life-and-change.html

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