DDH: why the sun isn’t shining yet

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The sun should be shining.

 

My little girl has her legs, I see them wrapped around me hugging me close and my soul burns with happiness.

 

How lucky am I?

 

To have a child with a disability hurts like nothing else but to have a child who can be cured, and quickly, floods you with relief.

 

But yet a cloud still hides the sun. I can’t breathe that sigh of relief.

 

She is doing bloody fantastically, she can climb stairs, she can pull herself up, she has stood for a second alone, twice.

 

She can’t walk, she looks at her left leg with suspicion. She breaks me when she reaches for my arms and drags her afflicted limb behind her.

 

Christ, I long for normality. I want her to run through paddling pools bursting with laughter, I want her to approach a slide without wariness in her eyes. Then I feel an overwhelming sense of guilt. Other kids don’t have the chances BB has, other kids don’t get better and here sits me bemoaning her lack of mobility.

 

I fret, I look at her legs and see one longer than the other. I look at her other limbs and panic about dislocations. I want to wrap her in cotton wool and keep her from harm.

 

She looks at the sky and sees no limitations; whereas my view is clouded by clouds.

 

I long for sunshine.

 

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24 thoughts on “DDH: why the sun isn’t shining yet”

  3. Hello Jane
    I’ve been reading your blog for over a year, as a fellow northern mum who will have southern kids. From your writing, I can see how tough it has been and you absolutely deserve to breathe that sight of relief.
    I grew up with a very mild form of a scary-sounding disability. It has given me legs that don’t match. It has been difficult, at times, but it hasn’t stopped me doing anything at all (well, OK, maybe I couldn’t have been an Olympic gymnast but hey ho). The big stuff is all there, I’ve travelled, studied, married and had a son. I work, I commute (boo hiss). It’s part of my normality and part of me.
    I’m sure BB will continue to improve, kids are resiliant and she has age on her side. But wherever this journey ends, you will find your normality and, I really hope, happiness and peace.

  4. The sunshine will come xxx

    P.S You write some fantastic stuff so I wish you all the best in the awards – This is not only because I think you deserve to win but also I am looking forward to the speech afterwards!!! 😉 xxx

  5. The sunshine will come, I can’t image the angst you have but I know that you will get through these months/years however long it takes until you see BB running jumping and dancing 🙂 x

  6. Do not beat yourself up for being upset over BB’s legs – we can all find someone else who seems to have more problems to deal with, but that does not make your problems any less valid. I’m really looking forward to sharing the news of BB walking and skipping again. I love happy stories about kids xx

  8. It’s inevitable and entirely excusable to worry about your children, whatever their circumstances and you have far more excuse than most of us. And it’s one of the joys of being a child that you have someone else to do all the worrying on your behalf.

  11. awww honey having been the same as your daughter all I can say is that she will grow up to be such a caring, loving and understanding little girl from the experiences she has had, I know this probably doesn’t help but experiences like this make us stronger individuals and more accepting of others. She will get there. xxx

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