When I started writing this blog little was I aware that it would help anyone other than myself. It was a penning down of bits and pieces of the journey as it unfolded. The lesson I’ve learnt over these 15 years is to never underestimate the power behind any act however small it may seem. Even if it’s just a simple written piece.Its so heartening when I hear from a parent that they had read my blog and used the home programme for speech consistently and steadily and found amazing results. And I had written that piece just for my memory’s sake 
.
I’m often asked,”How did I not lose it?” What stopped me from going plain insane?”.
Becoming a parent in itself a journey.Becoming a parent of a special needs child is a very special journey as I’d like to call it. My perspective as a parent altered to such an extent that it opened me up to many possibilities.I was a mother to 2 daughters-one neurotypical and one with challenges.
I can write here about self care, getting that walk in, going out for a coffee, music, books, baking etc.. tips on self care are indeed valuable, no doubt about that! But there’s more to it when you have to be there for your child, waltzing through therapies ,medications, tube feeds, innumerable medical checkups and always that watchful eye out no matter how grown up your child is ..
Self care needs some level of realisation and inner work to actually do it.
What no one told me was that it’s ok to lose it . It’s okay to break down , to panic, to weep and weep till tears spill and dry out;to feel that space where you simply can’t breathe , to ask why me, to question everyone and everything including the Divine purpose behind it. It’s ok to shed the label of super woman/super mum.Instead for me it became all about escaping the anxiety and the panic and it became such a vortex that I’m not sure even now how I was able to get a grip on it and manage to pull myself up out of it.
When I started off my journey as a mother of a baby with a corrected heart and whole host of issues with absolutely no hope,medically the prognosis was dismal.All i had was realms of medical reports neatly bound into files but i had no real answers.
So I’m not sure what I started off with. There was no hope , no hopelessness either. Just a numbness and the acknowledgment that the journey had just begun and I had no clue what was in store.So I had to move with what I had in hand and whatever I could do to help my daughter.
Now when am asked how did I know what I needed to do then especially at a time when I had no smartphone or access to support groups and the plethora of information that one can find nowadays. I allowed myself to not know at times.Ok, in a a way am relieved I didn’t have an information overload.This allowed me to rely on my common sense and intuition rather than struggle with what to do.But it also made space for this strange aloneness that I could not express.
My focus shifted more inward,more on my 2 girls and husband and home and assimilating how our small world had turned topsy turvy overnight . It also helped me to tune into my child’s needs at a deeper level rather than looking at it as a diagnosis of cerebral palsy. This tuning in helped me through the years with her learning journey, her therapies and recognising what worked for her and what didn’t, why not to push her into doing things she didn’t want to... it’s all about common sense but as parents the urge to see one’s child as so called ‘normal’ is so strong that it takes some level of courage and conviction to understand it.
However challenged or dependant your child with disabilities maybe,verbal-nonverbal,tube fed or not..your child is a living breathing expression of Life in its purest form who has chosen your family in this lifetime...tune in, allow yourself to just be, forget the comparisons on the path( parenting isn't a competition),nurture yourself and watch your child absorbing this ( i didn't until my body warned me).You are doing the best you can at all times always:)
The above image was striking to me because it took me years to understand that its ok to put down the 'yesterdays' in a blink of an eye. And keep going with the moment, forward..no looking back!
I’m often asked,”How did I not lose it?” What stopped me from going plain insane?”.
Becoming a parent in itself a journey.Becoming a parent of a special needs child is a very special journey as I’d like to call it. My perspective as a parent altered to such an extent that it opened me up to many possibilities.I was a mother to 2 daughters-one neurotypical and one with challenges.
I can write here about self care, getting that walk in, going out for a coffee, music, books, baking etc.. tips on self care are indeed valuable, no doubt about that! But there’s more to it when you have to be there for your child, waltzing through therapies ,medications, tube feeds, innumerable medical checkups and always that watchful eye out no matter how grown up your child is ..
Self care needs some level of realisation and inner work to actually do it.
What no one told me was that it’s ok to lose it . It’s okay to break down , to panic, to weep and weep till tears spill and dry out;to feel that space where you simply can’t breathe , to ask why me, to question everyone and everything including the Divine purpose behind it. It’s ok to shed the label of super woman/super mum.Instead for me it became all about escaping the anxiety and the panic and it became such a vortex that I’m not sure even now how I was able to get a grip on it and manage to pull myself up out of it.
When I started off my journey as a mother of a baby with a corrected heart and whole host of issues with absolutely no hope,medically the prognosis was dismal.All i had was realms of medical reports neatly bound into files but i had no real answers.
So I’m not sure what I started off with. There was no hope , no hopelessness either. Just a numbness and the acknowledgment that the journey had just begun and I had no clue what was in store.So I had to move with what I had in hand and whatever I could do to help my daughter.
Now when am asked how did I know what I needed to do then especially at a time when I had no smartphone or access to support groups and the plethora of information that one can find nowadays. I allowed myself to not know at times.Ok, in a a way am relieved I didn’t have an information overload.This allowed me to rely on my common sense and intuition rather than struggle with what to do.But it also made space for this strange aloneness that I could not express.
My focus shifted more inward,more on my 2 girls and husband and home and assimilating how our small world had turned topsy turvy overnight . It also helped me to tune into my child’s needs at a deeper level rather than looking at it as a diagnosis of cerebral palsy. This tuning in helped me through the years with her learning journey, her therapies and recognising what worked for her and what didn’t, why not to push her into doing things she didn’t want to... it’s all about common sense but as parents the urge to see one’s child as so called ‘normal’ is so strong that it takes some level of courage and conviction to understand it.
However challenged or dependant your child with disabilities maybe,verbal-nonverbal,tube fed or not..your child is a living breathing expression of Life in its purest form who has chosen your family in this lifetime...tune in, allow yourself to just be, forget the comparisons on the path( parenting isn't a competition),nurture yourself and watch your child absorbing this ( i didn't until my body warned me).You are doing the best you can at all times always:)
Just dropping by to say a little Hello! :-)
ReplyDeleteThankyou for dropping by😊it reminded me I need to come back to my blog again. Hope you are doing well
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ReplyDeleteThank you for sharing Jotsana ji. Can relate with your journey and what you experienced.
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