Sometimes I sit and think to myself as my children are growing away and I am shock horror becoming a older mum. Thinking back to those early days and if I knew then what I know now would things of been different. Would I of spent nights up not able to sleep being hounded by so many worries? Yes of course I would, I’m a mum that’s my job. Would I have fought so hard to get my children all the help? Definitely but more like a tiger, not at first like a rabbit caught in headlights.
So with all that in mind, what would I of done different of course is too late for me now, but to anyone discovering their child has a additional need, illness, coming to terms with a diagnosis please listen to me. What I would of done different would of been not to allow a stare, patronising comment to of ruined my day, made me feel some type of shame because I gave birth to my quirky child. Even for that slight second judging my own child and comparing them to others, I see no one has the right to make you feel like that. Always remember it.
I would know better then to allow everyone well meaning or down right nosey giving me so much advice that it makes my head feel like it is in a washing machine. I would of gone by my instinct, it hasn’t failed me yet. It seems as if ignorance can surround you at these times.
When you are still trying to come to terms with a type of grief. It is a grief you have when you grieve the child you thought you have. From the minute you hold that little precious bundle in your arms it feels like your holding your world to treasure.
You imagine it all family life, first birthday, nursery, schools, colleges, weddings it all can play out in your mind like the most memorable movie of dreams. So when suddenly the movie isn’t playing the same way hospitals, doctors, stress and shock are now taking the lead plots. This is devastating for any parent to deal with. The path you thought you were treading safely suddenly disappears around you and you have to find a new path.
So much judgement
The last thing you need is comments like isn’t your child walking, talking etc from a so called friend who thinks their child is now ‘Brain of Britain’ who just can’t wait to shove your child’s shortcomings at you. At this time it is so easy to feel so much is stacked against you and other people’s attitudes and comments become a huge factor in your life, but really all they do is add to the pain and stress you are already suffering. Don’t allow them.
They are not you, they don’t spends nights up worrying, they don’t make the best choices for your child and your child knows that mummy is doing their best for them. It easy to drop in for twenty minutes and think you have the right to judge, but nobody has that right unless they live your life 24-7 they have no opinion that could matter.
As you battle along your suddenly see for yourself surprises along the way. They’re like glimmers of joy that you just want to keep in a jar to light up your heart on the darkest days. Your child will make you smile at times when you feeling like sobbing your heart out. They will give you unconditional love that grows inside like a flower in bloom that will help you stand tall when you just want to crawl away and hide.
Be prepared the things that used to keep you awake at nights dreading. They will be accomplished not in the boring conventional way, but in your unique amazing child’s way. Your child will no doubt become your hero as no one will witness all their accomplishments. No one will see their daily brave battles.
Whether it’a learning to make sense of the world around them, coping with extreme pain, walking a few steps without a walking aid etc. Whatever disabilities or illnesses your child has, you’ve been there with them through every step of the journey and watched their progress.
When you next come across that snooty condescending mother in the playground who looks down at you and insist on bragging to you how their little mastermind has passed their school spelling test etc. While at the same moment her little darling is screaming the playground down because a bit of mud has splashed them.
Don’t forget to delight in telling her while she struggling to control her child. How incredible your child is, how they been dealing with so much pain but got out of bed, smiled after having a medical procedure, anything your amazing child has achieved. Make sure you shout it from the roof tops and rub it in her face. As she stands there with her mouth open, just turn around and walk away with your head held high.
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I am founder of Campaign For Disability Awareness (CFDA) where I raise awareness for all disabilities physical and invisible, running disability awareness workshops in the community.
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