If you had told me 18 months ago that I would give up a job I loved to be a full time carer for my son, I would doubt you were telling the truth. Now I 'earn' Carers allowance each month and know that leaving work is the best decision I ever made.
If you had said to me 18 months ago that I would become a dab hand at tube feeding, I would never have believed you. Now I can do it with my eyes closed.
If you had told me 18 months ago that I would have the strength and courage and determination to challenge the opinion of Doctors and Paediatricians, I would have thought you had got me mixed up with someone else. Now I trust my instincts and know that whilst I may not be a medical professional, I AM an EXPERT in my son's needs.
If you had told my 18 months ago that I would make new friends with total strangers through the internet, I'd have been insulted. I've enough friends already - surely only loners and losers make 'cyber friends'? Now I have a near army of 'special needs mum's' through Swan and Unique and facebook and twitter, who I can call upon, any time, day or night, who understand my worries and fears; who can answer the silly questions; put my mind at rest and really rejoice in the small steps and achievements along the way.
If you had told me 18 months ago that I would regularly perform basic life support on my own child, I would have gasped in horror! Surely no-one could do that? And here I am, 18 months later, regularly resuscitating my son.
18 months ago, I could never have imagined the life I lead now. To feel so vulnerable and yet to appear so strong. To feel such love and to simultaneously feel such fear. To plan so far ahead and yet live day to day. To feel at times happier than I have ever felt and yet also so very very sad. To use words like life limiting and life threatening and hospice in day to day conversations and yet still feel truly blessed.
My wonderful, beautiful, special son has brought such joy into my life and in just 18 months has taught me so much. He has changed me in a way I would never have thought possible and at times I don't recognise myself.
12 comments:
Oh em. You are fantastic!
Love, one of your losers xxxx :-)
Cheers Rach, :D Xx
You've summed it up so well, I look forward to reading more xx
Lovely post x
Thank you both. I appreciate you taking the time to read it and comment. Just starting out at this blogging business. :D
You brought tears to my eyes... This is a beautiful post. I am so glad you started this blog (for more reasons than posting to Special Saturday).
If someone had told you 18 months ago that sending your story into cyberspace would be helping others (and yourself too) - you probably would've thought they needed some sort of 12 step program...
Parenting a special needs child changes us to the core... and that is not an easy thing. The pace is different, you learn about what really matters, and you learn to take things one tiny step at a time. One step at a time can take you an awfully long way.
Thank you for sharing to eloquently
Thank you for your comment. Yes I doubt I'd have ever considered posting 'my story' on the internet 18 months ago, but it is quite therapeutic actually. And it would be nice if it went in some way to help others too, even if its just that you realise you're not on your own.
And I like your thought that one step at a time can take us a very long way, even if those steps are smaller than we expected. :D
Btw I've tagged you over at mine to help with the Save the Children campaign, if you have a minute x
Found you at Love all Blogs and wanted to say what a wonderful post this is. x
this is a beautiful post and i so look forward to reading more. you explain so well the ups and downs - the rollercoaster - of living with a child with additional needs; the happiness and feelings of joy and being blessed to the sadness and fear and isolation. To so many we appear to be so strong, when actually we feel like we need saving. i look forward to getting to know you a little better and sharing the good times and the bad.
Hi Em, found you via my blog and Love All Blogs. This is a beautifully written post that really captures the rollercoaster ride of emotions that we experience bringing up special needs children. I look forward to reading more of your posts. Deb x
Hi Jontybabe, ever hopeful muumy and Deb, thanks for reading and commenting. I think 'rollercoaster' is the perfect word to describe it! The ups and downs - sometimes within minutes of each other, the indescribable highs where you can be giddy with excitement and the stomach, churning gut wrenching lows! Never a dull moment though eh? Look forward to getting to know you all too. Thanks for popping by.
Post a Comment