Almost everyone I know has been wonderful with the news of R’s Autism
In fact, I often say we meet a nicer type of people in the special needs worlds and encounter a nicer side of people in the typical world
But on a rare occasion, I get to experience a brand of sympathy that I find especially hurtful
The kind that assumes my life is all doom and gloom
“ I know you are just putting on a brave face.. I dont know how you do it” a friend told me when I told them I was okay in the early days of finding out , “I know you can’t really be okay .. its okay to mourn… you can tell me like it really is ”
Its as though the new rules, for my life as the mother of a special needs child, are to develop a gritty forbearance.
A sort of shouldering-my-burden with a make-lemonade-when-life-hands-you-lemons strength
As though I don’t have the permission to be happy and proud any more
But it’s not like that
Its not gloom and doom at all
For R is a child of endless charm.
A dream come true, as I tell him everyday
And I am a very lucky mother
(Its a lot of work but work does not preclude joy)
In the sisterhood of special needs mamas that tell our stories in our blogs, we have been talking about authenticity lately
A need to tell the whole story
Not just the good bits
Also the bad bits
Its as though we are saying – here is all the detritus, all the rotten stuff- now that you know this whole complete story of me – do you still love me?
This has made me reflect on the way I tell my story
Do I pick only the shiny, pretty bits and pieces of my story?
Do I gloss over the hard bits?
I don’t think so
I really do experience my life in the way I talk about it
But the truth is that there are many true stories about the same thing
All truths are only versions
For everybody says it like it is
Like it is to them
So I speak my truth, the complete truth and nothing but the truth
When I tell you that life is good
And I am okay
K writes about her life as the mother of a charming 5 year old at her blog Floortime Lite Mama
LOVE this. xoReplyDelete
This was beautiful! Thank you. I can't believe this is your first guest post! I love reading your posts.ReplyDelete
Thanks for the reminder that it's not all gloom and doom. Yes, some days are tough, no doubt, and the learning curve is never ending. But don't pity us. My least favorite line that has been said to me is "wow - you really have your hands full!". I'm glad you're ok and I'm glad you write your blog.
It is definitely interesting how others perceive our lives. The worst comment I have ever received is "I just don't know how you do it". Do what? Love and raise my children? Who wouldn't? These kids of mine are awesome and inspiring.ReplyDelete
The whole story is important and I think sharing the hard times too is crucial. The hard times reach out to others going through the same and show them they are not alone.
Beautifully said. :-)ReplyDelete
My son has autism ....Autism does not have my son!!!!!!ReplyDelete
Yep!! "I don't know how you do it." is one of my least favorite lines. I understand the well-meaning intention behind it, but really....did I have a choice in the matter? Wouldn't we all do this for our children?ReplyDelete
Oy. Now that we're adopting another child with special needs, people now just think we're nuts! What I find most is not wanting pity. Drives me nuts.
Another beautiful post K. Similar to "I don't know how you do it" is the dreaded "I could NEVER do it." Yes you would and you will when you inevitably face your own hardships with your children. I went through my phases of grief in the beginning, but that's long behind me. My daughter is pure JOY and it's my profound privledge to be her mother.ReplyDelete
You are right that raising a special needs kid isn't all doom and gloom and it isn't all joy and happiness. We all have good days and bad days. Great post. Stay positive.ReplyDelete
Beautiful, K, as always. =)ReplyDelete
I've been told that I'm still in denial. What am I denying?!ReplyDelete
How true that there are many different ways to tell the same story. It can change from day to day and even hour to hour. You have such a beautiful way of getting to the heart of the matter - thank you for sharing this here.ReplyDelete
You always leave me with a lump in my throat, I love this K.ReplyDelete
Love the way you put it, K, totally agree :).ReplyDelete
"For R is a child of endless charm.ReplyDelete
A dream come true, as I tell him everyday
And I am a very lucky mother"
The love you have for R and the fact that you are peacefully content with your life and with HIM always shines through in your writing. I feel your truth.