Perfection is not required

I've been thinking a lot about N, about her life, present and future, and about what my role in it should be. I'm not talking about the regular mum role or her regular life as a 4-year old, I'm talking about that little bit extra that comes with the fact that she has cerebral palsy. I was reading a review article this weekend which looks at the different medical therapies available for children affected by cerebral palsy in the light of current research. It's an interesting article and it got me thinking again about how we try to help N make progress in all aspects of her development, particularly her physical development, where she faces her greatest challenges. At the moment, N's head control is still quite erratic although she continues to steadily improve, and you can imagine that without good head control things like sitting, standing or walking are not exactly within reach. So I ask myself: what is the right attitude in face of this situation? In one extreme, I might become almost obsessed with N improving, relentlessly looking for a "cure", very focused on achieving particular milestones and pushing constantly towards a set goal. On the other extreme, I might feel that since there is no cure for cerebral palsy I might as well accept my daughter as she is and just let things be. It feels obvious to me that I should aim for somewhere in between but it doesn't always feel easy to strike the right balance.

My little N at 5 days old. What a miracle her life is... It is incredible to think that from such humble beginnings she has grown to become an amazingly strong and beautiful little girl.

I obviously want N to continue to develop and to improve on the things that limit her ability to live and play like an ordinary 4-year old. I know that the brain is an amazing organ and that its plasticity offers incredible hope for anyone that has been affected by a brain injury. In fact, there is a lot of research that demonstrates neuroplasticity and so the potential for improvement is there. How we might tap into that potential is a whole different matter and this is already the first hurdle. There is an incredible amount of information out there and it can be paralysing to even begin to look for what might be the best approach. Articles like the one I mentioned above do help but there is obviously more to it than that, because not all approaches that might work for N will have been thoroughly researched with published results, either because they are relatively new or not typically "medical". 

My little fighter, constantly defying expectations

Already looking like a completely different child during her first Christmas at home

 At some point when N was around 1 I started thinking that her regular physiotherapy was really not enough to help overcome some of the challenges of her condition. At the time I looked around online for information on different therapies and I came across Feldenkrais which is a type of movement therapy. I found some free audio lessons online (you can find the link here) and I followed a lesson about turning your head around to look back (it's lesson #6 under the 2011 tab) and I thought: wow! this is really simple but quite powerful. I was intrigued and booked N to have a few lessons with a lovely Feldenkrais practitioner called Hannah Wheeler. The lessons were interesting but the times available were quite limited and when N started school I had to find an alternative. Hannah had told me about a book called "Kids Beyond Limits" by Anat Baniel who had developed a therapy that she called the Anat Baniel Method (ABM), based on Feldenkrais. I thought the book was great and it was the first time I read a book about cerebral palsy or therapies that didn't make me feel depressed at the end. I thought the theory behind it made sense and I really wanted to give it a try so I found Doreen, an ABM practitioner that was based not too far from us. N's been seeing her for about a year and a half, at first once a week and now we try to see her twice a week. Is it a miracle cure? Does N now magically sit and stand? No. But she's getting better and I can see the improvements right in front of me when Doreen's working with her and I see the small changes that have been accumulating over time. It can be difficult sometimes to explain the benefits because for all intents and purposes major milestones have not been achieved but we can see small and powerful changes and so we persevere. 

At around 1 year old

She's always loved water and swimming

Wearing an eye patch is NOT one of her favourite things, and can you blame her?

I do my best to continue Doreen's good work at home but this is not an easy task in many ways. My knowledge is obviously limited and so I have only the things I can learn from watching and my instinct as a mother to rely on. Then there is also the fact the it's very easy for play to lose all fun very quickly when everything has an ulterior purpose. Sometimes when we're playing I find myself constantly trying to come up with ways to make things "better" for N, to help her learn: the box should go on the left so she can look more to the left and straighten herself, the book should be a bit higher to encourage her to look up, she could hold the (toy!) syringe with her left hand and push the plunger with her right hand to help her learn to use both hands... The list goes on and in the middle of all of these things I'm still trying to physically help and support her so that she can sit up or roll around or stand... Some days she seems really relaxed and she finds the right positions to keep herself stable, other days she just doesn't manage to hold her head or her trunk and I'm left with a pretty heavy weight in my arms and the sinking feeling that I'm trying to achieve the impossible... Emotionally, it is very difficult to deal with the frustration I feel when faced with this seemingly erratic behaviour. I quickly go from 'Why is she not holding her head??!' to 'I must be doing something wrong/not enough because she is regressing'. I think that ultimately it is probably just the way things are, people are not always in the mood and I cannot pretend to know what it feels like to be in her shoes, wanting to do something and your whole body not responding the way you want it, having to carve new pathways in your brain for even the simplest tasks... 

In a pretty Summer dress at 1 1/2 years old

The hair band was on for about 10 seconds but doesn't she look cute?

 My big fluffy bunny all tucked in and ready for the snow

And this is where I think the balance between the two extremes I mentioned before becomes really important. Sometimes you need to just let things be. I remember talking to N's occupational therapist a while ago and saying: 'Today I put the little box of animals in front of her and just let her play with them. I didn't ask her what they were, if she could sign for them, find the matching pair... I just let her grab, chew and bang them around'. This might seem ridiculous but it really isn't easy to turn off "must help N get better!" mode. And then there is also something that I think about a lot: "Perfection is not required". N doesn't need to sit, stand and walk to be happy. She's not a broken appliance that needs to be fixed because it is otherwise useless, she's not someone who isn't good enough. She's a wonderful little girl who is very patient and loving and kind. All she ever wants is a bit of attention, a cuddle and kiss. I couldn't have asked for a sweeter daughter and, needless to say, I love her just the way she is. But I think that the danger with being overly committed to progress and improvement is that I might pass on to her a underlying feeling that she isn't good enough, that she needs to be fixed, that she's broken... So I try to maintain a balance between being the therapist and being the mum and I can only hope that she can grow up to be a wonderful woman, confident and in acceptance of who she is and ultimately, happy. 

In this supermarket things are always expensive! And you need to tip the cashier at the end ;)

  And here she is, my big girl Natalie