I guess like every other parent ... I do ... But I have been finding myself doing it more and more lately ... As I push him from one therapist to the next... throwing him into situations and extra curricular therapy that most kids wouldn't even blink an eye at .... Am I crossing over the line of normality?? Is what I am pushing him into .. making him happy ... will it help him later in life ... IS IT ALL WORTH IT??
I have gone from literally forcing food between those sweet little lips ... to letting someone else try and do it for me ... not the force part obviously ... the gentle persuasion ... and so far we haven't had too much luck ... The only positive gesture was taking a bite of corn off a corn cob which hasn't since been repeated... We are still on our limited safe foods ... We are still LIMITED .. I know we have only been doing it for a short time ... but where is that line where I say STOP ... where I say enough is enough ... I am pushing it too far ... I am positively forcing him to do something that isn't working and isn't going to make a difference in his life???
As I stare into those 2 little blue eyes ... That smile ... That cry ... That show fear ... That need ... That want ... That look for reassurance ... His little mouth that says NO ... That screams no ... That tells me it HURTS ... His arms that grip sooo tight into me when they are stretching his sore weak little muscles ... His fingers and nails that rip into me when he he is afraid and doesn't want to be let go ...
You have never experienced heart break ... until you have looked at the fear in your own flesh and bloods eyes ... the panic on their face as they are held down to have yet another anaesthetic mask forced over their face for yet another procedure ... The pure torture of subjecting him to operations and physio ... The botox ... the serial casting ... the stretches every morning and every afternoon ... the medicines that keep him alive ...
There is no easy way to approach any of this... from the moment of his birth ... our life changed ... destined to be irrevocably intense ... a hard road for both of us ... our shared experiences of his pain ... my heart break ... and the un-waning need to make sure it is all ok ... There are moments ... like this one ... where I retreat into tears ... into the need and want to roll him up in a 24 metres of bubble wrap ... carefully carving out holes for his arms .. legs and head ... I feel like I am trying to create a polar opposite life experience of what I think he feels ... Trying to make everything fun ... and achievable ... It is hard to know where is that line to push him to ... to know that he just can't do it!!
I know to a certain point everyone in my family and close friends .. sugar coats something for him.... Some more than others ... It's ok .. It's cos they care!!! He is not treated by them, like a normal little boy lol ... He is treated (especially by my gorgeous nan and mum) .. like the sun shines out of his bum ... cos in their eyes he can do NO wrong :P .. Generally they don't see the melt downs ... the pain ... the heart ache .... and the attitude ... They aren't at the appointments ... they don't have to see the difference between him angry and him in pain .. they just get happy Boogie... Happy meltdown free not tearing into my skin Boogie!!
But not every meltdown is Sensory related ... We have normal 5 year old melt downs too!!! Where he pushes and pushes and PUSHES until I myself have a mini meltdown of my very own... But my meltdowns ... tired, stressed, emotional ones anyway ... seem to be occurring more and more .. The more I push him ... the more I feel guilt!! And guilt brings tears ... And tonight ... I am bawling my eyes out .. I LONG to feel normal again ... to have no worries ... no guilt ... To be HAPPY ... not that I am not happy ... But I remember what carefree is ... and I wish he could know that kind of normal too!!!
What is normal in those eyes anyway?! In his eyes ... I long to know!!