Trying to find the energy to face this again #DDH

In 18 days I will once again be handing over my two and half year old to the anaesthetist and her hip consultant.  He will place that now familiar mask over her face while she twitches herself into a deep slumber.  We will, as on autopilot go downstairs and drink coffee out of papers cups without really speaking to each other.  There really are no words or conversations that flow easily when your child is in theatre.

We know this routine well now.  It will be the fourth general since October.  The age two and half bit is mightily important as she wasn’t able to have this pelvic osteotomy until she was 30 months.  Erin spent her second birthday bound by the cast and now her two and half mark will be dictated by that same fate.

Erin has done 18 weeks in cast and part of me tells myself and everyone else that as this time it is only for six weeks it’ll be fine.  In my head I know this.  We know how to handle Erin, we know how to wash her in spica, we know how to change her nappy, I know she will adjust and cope again – afterall she has no choice.

And yet,

My heart is breaking for her and for me.  For Erin, who remember has now learnt to walk twice, she will once again be held back by a body that doesn’t do what she wants it too.  She will be back to watching her peers run, jump and dance.  She has found her feet again and wants to walk everywhere.  However this walking is not fluid, natural and flawless like other two and half year olds.  She limps, wobbles and falls.  She does not have full control, her muscles are weak and too flexible, her chubby little legs have to work much harder than most. She now understands much more fully that she is different to the other children at toddler group. Yet she never gives up trying.

For me, it is physically and emotionally tiring have a child in spica.  It is heavy carrying a big toddler with a cast from waist to toes, its takes longer to do everyday tasks.  When out and about you have the looks from people to contend with, that man that asked me why I park in a disabled spot rather than a mother and child, plus going to get some bread from the supermarket means pushing Erin one-handed in her buggy, whilst I balance a basket on the other arm, as Erin can’t fit in a shopping trolley.  You also go on an emotional overload.  I try to compensate all the time, I need to be on hand all the time for Erin, when she is in cast I don’t really sleep.  It’s more of a doze, you never switch off.  It is exhausting, but I am thankful I have found others on this and similar journeys.  Both Jane’s experiences and Molly’s help.  It is good to find others and know you are not on this journey alone. 

Yesterday I told Erin that soon we are going back to hospital, she cried, she pleaded

‘please no purple legs please’

I honestly think a little bit of me died when she said that, there is no fudging it now. She knows, she understands and she gets it.  And that hurts. 

It is also the unknown that scares me.  People ask if this is the last operation, if it’ll all be ok after this.  The scary bit is we don’t know.  We hope and pray but we don’t know.  Whilst the hip is the immediate concern there are other medical things that are being looked at.  The future holds more appointments with more specialists.  Erin is hypermobile and will be seeing a rheumatologist for a full diagnosis once the cast is off.   This is all happening too fast I would like the clock to stop just for a bit.  Let us enjoy being here right now, maybe in semi-ignorance but at the moment we are doing great.  She is walking and her speech has developed loads in the past three months.  The speech therapist was really pleased with her progress since coming out of spica.  As she said to me – language is learnt through experience and whilst Erin was in the cast her experiences were limited.  At school this week she got out of her buggy and was feeling the leaves on the bush – a taken for a granted activity for most, but until very recently not for Erin.

 I just need to find the energy to face this again.

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