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 miracles, big acheivements


There’s a poem/essay that occasionally does the rounds on the social networking sites, called ‘The Special Mother’ by ErmaBombeck.  There’s a line in it that I love: 
“She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

I took hundreds of photographs yesterday of Little H trying to get a balloon into his mouth.  I was torn between not really wanting him to put a balloon in his mouth in case it burst and desperately wanting him to achieve this tiny little milestone.  He was so determined, bless him.  Mouth open, head bobbing, fist clenched, time and time again getting close but not quite there.  When he finally managed it, I squealed with delight, took more photos and declared to anyone within earshot “he put the balloon in his mouth” whilst wiping away tears of joy.  I genuinely couldn’t have been prouder. 

Little H is nearly two and a half.  I’m not sure where on the list of developmental milestones getting a toy to your mouth comes; probably somewhere around the 2-3 month old mark.  I could look at the Bounty website; or Baby Centre; or one of the many other ‘helpful’ websites that send out weekly emails telling you what your baby should be doing and when, but I’ve gone past finding them completely soul destroying now and really don’t care.  Little H will do things in his own time.  And each tiny little achievement he makes fills me with immense pride.

I hear mothers complaining about their children not being on the same reading book as their peers, about them being in the middle group for maths, about them not being able to write their own names yet.  Sometimes I wonder if they can see just how much their child has accomplished already and take time to be proud of that? 

I used to teach in a mainstream school and remember marking books with one compliment and three points to improve.  This was the policy.  Identify one thing they’d done well, but point out what they should have done to take them to the next level.  It felt like we couldn’t appreciate what the children had achieved without pointing out just how far they had to go and how much better they could have done.  This was in a primary school.  The children were 10!  The sad thing is, I know my school wasn’t alone in teaching and marking like that.  Pressure to meet certain levels mean that nothing is ever quite good enough.  Conversely, what I loved about teaching in a special school is that we were encouraged to find the positives in everything and really celebrate the children’s achievements, no matter how small.  A much nicer way to teach and surely much better for a child’s self-esteem?

I sat at a mother and toddler music group recently and I watched as the babies, sat (independently) by their mothers, clapping their hands, reaching for toys, making eye contact and smiling at each other.  Their mother’s continued conversations, above the children’s heads, oblivious to the hundreds of achievements their children were making.  That same session H turned to the sound of me jangling bells by his head and smiled appropriately at a large dog puppet.  Huge, wonderful achievements. 

 
 How lucky I am to see and appreciate each of the little steps my son makes. 
How lucky I am to be able to celebrate everything he accomplishes without worrying about the next steps, where he should be, where his peers are at. 
How lucky I am to be able to value his every achievement, no matter how small.

How lucky I am to witness such miracles and recognise them as such.


This post is written as part of the  #definenormal blogging challenge courtesy of the lovely RenataBplus3 from Just bring the chocolate


Pop along, read the other brilliant #definenormal posts and add your own idea of normal too.  Go on!  You know you want to.






Although it's a little late, I'll link it into #specialSaturday too, the theme of which is 'Achievements'.  Check out  the other special Saturday posts and keep up to date with the new themes: 
by joining the facebook page -http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog -http://specialsaturday.org/home/



Comments

  1. ohhh my goodness Em what a wonderful blog! I almost fell into the school gate nightmare this year until I stood back, slapped myself and realised that F was in school... HE WAS IN SCHOOL! He had friends, why was I worried, what was I thinking? For a minute I lost the wonderful perspective I am blessed to have through having him. Yesterday he put on a sock... I cried!!! He then put on a shoe, my new shiney super camera was out of reach to mark it, but he did it!!! His class do this without thinking. These parents shun their kids out the door morning after morning not seeing what their kids can do only frustrated they are on the first level reading book.

    I wish I could have been there, sat by you cheering as loud as you did, or holding the camera so you were in the frame! WELL DONE SUPER H... You are awesome :)

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  2. Thanks Katie. You're right, is so easy to get swept along in it all and worry about reading books and such like. I hope I will remember this when cheeky starts school!

    Well done Finn! When you think how far he has come! What a trooper. Camera or not, I am sure the moment is etched in your memory. How many other parents can remember the first time their little one put on their own shoes and socks?

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  3. probably never... and that is sad I know it was was 9th June 2012, a week before his 5th birthday party! and do you know what I should be filling his reading book in and he has not done it... I did feel guilty, but this time last year he could not walk for 20 seconds let alone read his name so they can wait!!!! Blogs like this are worth their weight in gold just to make you actually LOOK not see... but look! :)

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  4. His determination really shines through this post, you must so proud and excited about what his next achievement will be x

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  5. Brilliant writing, all so true. Little achievements really are the best ones. Nothing is taken for granted and we get to enjoy it all, which is fab :)

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  6. A lovely post,I think you have hit the nail on the head. Having a child with different needs is challenging to say the least but the rewards are great. Helping to care for Jess has opened my eyes to so many things a rewarding and humbling experience and I think I am a better person for it.

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  7. I love that you are so thrilled for every milestone that your son makes.I know exactly how you feel.
    I must say that I was saddened to learn about the marking system at your school... how awful having to find three points on what the child could improve on, although I realise it was not your choice to do this. :(

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  8. This is why I so love the posts that pop up on the Define 'Normal' blog hop, because you have put so beautifully what so many people feel. I have billions of photos of tiny changes, because in our family they are gigantic and it helps to look back and see how far we've come, when it feels like nothing changes x

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  9. Blue sky- yes really proud and excited. I think the fact that he is determined means that he will achieve more!

    Steph, exactly, NOTHING is taken or granted. I hink it almost puts us in a unique position to be happier because we appreciate so much more.

    Rewarding and humbling sums it up nanny Anne. And yes, I agree, it makes us better people.

    Bright side- I know, it is horrible. I hate to think of my eldest being subjected to such harsh marking criteria. I'd rather he was happy and had friends than qcheived top levels in his SATs

    So true Renata. The blog has also helped me document changes. When it feels like you are stuck in a rut, it helps to look back and see just how far you/ they have come.

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  10. Lovely post. So true - we do feel ridiculously thrilled about the smallest successes that would mean nothing to anot
    her parent!

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