Accepting My Child Will Never Walk

I remember reading, a few years back, about someone with cancer feeling inadequate because they weren't running marathons or raising millions of pounds for charity. They were 'just', you know, getting on, turning up for chemo, hoping for the best. I've read too about people who've become depressed (understandably) as the cancer has taken hold; felt like giving up. But those aren't the stories that make the papers; people don't want to read about that. They want INSPIRATION. Defying the odds... That kind of thing. Not just ... Well you know ... The everyday kind of suffering.  
I wondered how it would feel to have cancer and read about the people running 26 miles when you're barely fit to get to the end of your bed. Do you think 'fair play', or do you feel guilty, or unworthy, or maybe that you're just not trying hard enough?
Mind over matter and all that!
Hugh's undiagnosed condition has left his muscles very floppy. He can't walk or si…

Little Steps

It has been wonderful this week to begin noticing a change in Little H.  They are almost insignificant to those with children developing at the normal rate, but to us they are huge milestones, filling our hearts with joy and opening up windows of hope.

The first happened at a party we went to at the weekend.  The lights went out, the room plunged into darkness and the children shrieked, screamed, sang happy birthday at the tops of their voices.  Little H’s face first registered shock, then his little lip began to tremble and he let out an almighty cry.  The adults looked around guiltily and hushed their kids, telling them to calm down and not to upset H.  But me and the Other Half grinned at each other and clapped our hands in delight.  I think everyone thought we were mad.  But it is the first ‘normal’ response Little H has had!  It was dark and noisy and unexpected.  Of course he should be frightened.  Bless him.  Just a couple of months back, on bonfire night, at that same house H hadn’t even registered the fireworks going off just a few (dangerously close) feet in front of him.  Not a blink, not a turn of the head.  Nothing!  It was as if he could neither see nor hear them.  So this shock and fear is a huge development.  One, that at 20 months old, is finally starting to see him develop further than that newborn baby phase.

The second big development over the last week is H’s improved eye contact and his response to us.  He is really looking at us.  He turns as I walk in to the room.  And smiles!  He smiled at me!  Repeatedly!  We’ve been playing rough and tumble and tickling games and he has been laughing.  And he has even turned to watch his brother and smile.  Cheeky is delighted.  We all are.  To finally start getting a more consistent response from him, an acknowledgement that he knows we’re there and is happy about that is such a precious achievement. 

I would like to treasure this week, these little steps and these big feelings forever.  




I am linking this old post to Tricky Customer's  Celebrate Blogging Challenge. This world of special needs and disabilities has many rocky roads, we will find ourselves on many rollercoasters along the way. But, there are a lot of positives. Through our adventures so far, we have met a lot of amazing, supportive people. It has made us stronger. We have learned to look at the world through new, wider eyes and find ourselves celebrating what to others may seem such a small achievement but to us, it’s the world. It’s a tough world, but there is so much to celebrate. Our children. So please join Tricky Customer each week and post about what there is to celebrate in your world during the past week. I’m looking forward to reading your posts and celebrating with you.



Tricky Customer Celebrate Blog Hop

Comments

  1. How wonderfully heartwarming LittleMamma. Love celebrating those little successes. My favourites are when Chrissy really tries to communicate something she's observed rather than repeating a learned phrase parrot-fashion, like the time she noticed our cat's new collar, & said: 'Look cat's got necklace.' Quite big steps for our children really! xx

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  2. That is so exciting - hooray!!!

    What an exciting week, you must be a house full of smiles.

    You're right, they are little achievements but they are H's achievements and they mean so much more.

    Your post has given me a happy start to my day.

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  3. Love it :) More than anything you want them to be responsive don't know and then hopefully one day communicate with you. Looking forward to lots more progress xx

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  4. Jane Gregory - it is wonderful isn't it? Espescially when it is so unexpected. Not taking it for granted does make you appreciate it that little bit more I think.

    Jane - glad it gave you a nice start to the day.

    Blue Sky - I know, I don't want to get my hopes up too much but eye contact is the first step towards non-verbal/pre-verbal communication so fingers crossed.

    Thank you all for taking the time to read and comment. Xx

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