Tuesday, January 4, 2011

Loving this Life

Mums and Dads of special needs kids often wonder about what life would have been like if their child did not have special needs

Finding out -  can feel like as though  a giant hand came from above, scooped us up  from the and put us on a parallel road.

We glance back at that other road – the one that we thought we were on.

And we think how much easier that road would have been

We  imagine our  child without the disability -without  the struggles and it breaks our heart.

While I truly  understand and empathize( truly I do, for I walk in your shoes ) , I also believe this thinking is toxic

This dreaming of the child we were meant to have, blinds us to the beauty of the child we do have.

Not just in the way we think of our child, but even in the way we think of our whole life

It can stop us from recognizing all  the goodness of what we do have

For the only alternate realities we imagine are the seemingly better ones

Just take a minute to imagine a few unfortunate alternate realities. Ones  in which we are born in poverty or hunger or completely unloved.

And you will see what I mean about there being plenty and goodness in our current universe

The only thing to do is to look at your life and your child, abandoning all preconceived notion of what comprises a happy life

As I type this post - watching "Lie to me" with my husband - my son replaces my laptop ( with himself ) and says "Love ...hug".

This little guy of few words,sure knows how to use them.

I hold him close, I say a prayer of gratitude for this lovely life and this lovely child

How thankful I am,  that early on this journey I learned to  use my own eyes.

Threw away the old recipe for happiness and wrote my own

Thinking of all alternate realities, of how things are meant to be,  is futile

For there is only one reality

And its this one 

The one we are in

Live this life

Love this child 

K- Floortime Lite Mama  blogs about her life and her son at Floortime Lite Mama


  1. Beautiful, K. (((You)))

  2. So true. I think most people have those thoughts at some point, but to dwell on them and never move on is not healthy for anyone. Far better to imagine what alternate reality you can find with your child that is different - and better - than the one pronounced by the doomsayers and pessimists.

  3. absolutely. somehow, we have been chosen to live this path, and I wouldn't have it any other way.

  4. I love this post. Sometimes when your child is suffering it is hard to think this way, but I do get what you are saying here, and I would not trade my child and the learning and the blesssings, for anything.

  5. I have those thoughts but then I think of how my life (which I love) wouldn't be the same. When my other 2 are acting the fool, I have this lovely little one who is nice and kind in spite of his challenges :-)

  6. I definitely try no to dwell on 'what if'....mostly because I will never know 'what if', and since I am hoarding whatever mental reserves I have left :), dwelling just isn't an option. Great blog

  7. WOW. I LOVED this post. Just linked to it on my blog, I loved it that much.

  8. Chills and tears over this beautiful post! I love your insight and perspective. xo

  9. Thank you. Beautifully expressed. Sometimes the lessons learned seem to come at a very dear price; it hurts so much to have one's child suffer. But I would never replace my son for any other. Watching him confront and (mostly) conquer his challenges, I see a true hero.

  10. You hit the nail on the head every time.

  11. asit kumar bhattacharyyaJanuary 6, 2011 at 6:24 AM

    u r lovely honey, I see u have learnt to live with what u have & be happy & contended with it. This is the best philosophy our earlier philosophers in Hindu mythology taught us,This is the best teaching I got from my Guru, [religious teacher] & considered the best teaching.keep up the spirit.U do hit the nail in the rt spot.Best wishes---Dr asit k bhattacharyya

  12. This is such a beautiful post - it's funny though, I find it easy to love our "new reality", but I find that it's others that can't handle it... I guess I have the benefits of actually knowing my daughter and how sweet she is - just as she is, and I wouldn't want to change her. But people who don't know her can only see her disability and how "horrible" it must be... but really it's not :) It's just different.

  13. The post is as usual - great and takes us to see the world in a new light.....
    There are those who walk the paved path.... the made road.... the journeyed route...
    Then there are those who make their own road and pave their own path and of course others, the less adventurous ones, follow
    Your posts always make me feel good

  14. really really beautiful

  15. What a wonderful post, thank you. My son is now 15 and he has taught me so much about true love, acceptance and what really matters of which I would never have learned otherwise. It's all a matter of the heart which he has a lot of and I am thankful for that.

  16. This is beautiful. Thank you for sharing these thoughts.

  17. What you say is very true if we let ourselves what if we might not be able to appreciate the what is. I grew up with an autistic sister , and now I have an autistic son. I don't know any other way of life, and I don't know that I would want to. You learn to appreciate the little things more because the little things are usually great triumphs for our special needs people. Most children are potty trained by about 2 or 3 my son was 7. While most 3 and 4 year olds are talking I was wondering if mine ever would, and I get excited when my 8 year old puts 3 words together. So we learn to appreciate the little things and actually we are lucky in that way because most people take things for granted that we can only dream of for our children.

  18. A wonderful reminder! It can be very easy to veer off toward the road of "what if"! In my blog post on New Year's Day this is a small portion of what I wrote: "...we are so much more than the autism spectrum. I have to remind myself of this every day. We will not let the Spectrum define us though it is those very features that make our “typical family life” what it is…not always so “typical”. And I am not sure I would have it any other way. We have laughed A LOT this past year, sometimes to keep us from crying or having a nervous breakdown, but mostly I would like to think that it is because we have FUN. We truly ENJOY each other as we are!"
    Thank you so much for your beautiful post, K!!!

  19. I love the line, "Threw away the old recipe for happiness and wrote my own." I will share that with the people who visit my autism page on facebook. http://www.facebook.com/pages/Words-4-Autism/323956325331?ref=ts

  20. Perfectly stated. I am thankful everyday. Early on, when asked if we could take away his autism, we weren't sure. How closely tied to the child that I love is it? How does one know? I love him and that means all of him.

  21. I read this article and I cried because I was feeling down in the dumps about my child and needs. I love my child and would not trade him for the world. This article made me think that I am blessed.

  22. I wish I could maintain this optimistic way of thinking. I sometimes wish that my oldest child would be sent away, somewhere.....Anywhere just for a month, a week, a couple days..... This is most prevelent when we are going through a deployment. I get so exausted fighting... The oldest has R.A.D and PTSD. My lil one is high functioning autistic. I wish I could keep a positive mind set, it makes me feel like an awful mom.....

  23. today i had a bad day, im usually quite bubbly and upbeat, but today was a really "why me" day, our 2 yr old son was diagnosed with Autism 7mths ago, and i think i have just had about every kind of speciallst possible at the door, reading your blog was the best thing i did today, it made more sense than alot of the info i have been given, youre right, i am very lucky to have conor, he is an amazing child, even if he can just say "eeeeeee", and even if he does only eat 2 types of food, and watch the same tv progs over and over, in the night garden, waybulloo, even if he doesnt like being in a crowd, and likes the same toys until the batteries die and i have to go trudging out to find more, so what, i love him, and sometimes i wonder how his world looks from the inside, he is always smiling whilst i stress, he is always calm when i am flustered, sometimes i wish i could climb into the bubble with him. as long as Autism doesnt bother conor then i promise not to let it bother me anymore. it did, i admit it, but no more. hes my son, my amazing smiley son, and i love him unconditionaly. thankyou for the blog. xxxx mindy xxx

  24. oh and jen? just for the record honey, youre not a bad mum. a bad mum doesnt have the concerns or worry the way you do, a bad mum wouldnt beat herself up like that now would she? she simply wouldnt give much of a hoot! on facebook, mindymoobs, chat anytime x

  25. I'am so delighted having read your article...its like you have read and has seen my dilemma all this time. Thanks so much for putting most of our thoughts into your wonderful article, It's a great feeling to be different from the normal people and whats even greater is knowing we're not alone in this extraordinary and special space we're in. I know somebody more all knowing and loving is in control so lets all take and accept this wonderful journey with a thankful heart.

  26. I am not trying to be the pesemist here, but there is no way you can always be so chipper about the situation. You guys must have a huge support netwrok. I just can't see how all of these blogs that I read for children with special needs are all butterflies and babypoop. Sry to be the negative one, but it seems like fluff and not quite real to me.

  27. Last time..... Maybe God is trying to tell me something, and I am sry for spreading pessemisism...
    I got this in my inbox today, along with something similar in my gods words thing on facebook....
    The Faulty Valve
    We recently called a repair company out to fix the icemaker on
    our refrigerator.
    He came and studied the problem and discovered that a valve was
    faulty. He replaced the valve and after a short while ice was
    produced. The valve was a small part on the whole refrigerator,
    but this small part blocked months of ice from coming forth.
    It is this same way with life.
    One tiny thing in your relationship can stop cubes of joy from
    being experienced.
    Perhaps, it is just the unappreciation of the other person.
    Many times we don't know what we have until we lose it.
    One near-microscopic item in your diet such as crystals of salt
    can make the difference in the blood throughout your whole body
    flowing properly.
    One mindset change from "I sure can't stand this job" to "I am
    blessed to have a job after thousands were laid off this month"
    can make eight hours a day change from drudgery to ease.
    Two dollars given to a homeless person with the words
    "have a special day because you are someone special," without
    them asking, could change their life forever with the feeling
    that somebody cares.
    One small step of trying an idea that you believe could work may
    make the difference in you becoming an employer instead of an
    What one thing do you need to change in your life to allow the
    waters of life to flow?
    Two dollars given to a homeless person with the words
    "have a special day because you are someone special," without
    them asking, could change their life forever with the feeling
    that somebody cares.
    Yes, the above paragraph was repeated.
    Go do this. Unstop the valve.
    ~A MountainWings Original by James Bronner~

  28. Beautifully written! Thank you...

  29. Thank you guys so much for the lovely comments I really appreciate it

  30. oh and Jen - wanted to send you a big hug
    I am sorry I came across as annoyingly chipper .. thank you for sharing that lovely poem