Little C who is 4 years old is styling my hair with her play set is asking me a question
What color do you want your hair to be? You can choose pink or purple?
Are those my only two options? I ask
Yes ! she nods solemnly...
"You should choose purple" she further advises - after taking my skin color and clothes into account!
"Will you come visit me to touch up my hair? I ask
"I can't "she answers "I dont know how to drive quite yet "
At this, we all burst into laughter
We are at a friends house . Her mom - is expecting a second child in January
Last year she and her husband were considering having another child - She is older ( early 40's though she looks very young )
She told us that she almost decided not to - for fear that something could go wrong
But she said that by being with us she had realized that life could still be very good even when things don't go according to plan
It is true
Our life is very good indeed .
Saturday was a snow day.
We dont get a lot of snow here in TN. But we deeply enjoy what we do get
Snow is always pretty
But when you see it through R's eyes- snow is magic .
Our ordinary neighborhood is a land of enchantment
Everybody is inside their houses
The road is empty except for a dancing R
He points to the trampoline
The trampoline is covered in snow.
I patiently explain we can not
I tell him to use his words and he says "Puck bee upp"( pick me up )
Unable to resist the spoken word - I pick him up and put him in the trampoline
"Come Iside"( come inside) he beckons to me and though I have pulled my back this morning - I am unable to resist
And so we do
We jump on the trampoline, slipping and sliding
But somehow not falling
One of the things, special needs mommies struggle most with, is the thoughts around what might have been.
They imagine their child without the disability and with the struggles and it can break your heart.
Further, its easy to be around children like C - hear their adorable prattle - and to be filled with wistfulness
But there is a big problem with that
That problem is that not only does it stop you from enjoying other children , but worse, it blinds you to the beauty of the child you do have
As I am picking up R's babies--- doing my put-everything -in-place rituals of the night -( Linny and Tuck and the unattractive but oddly adorable Backyardigans) - I think of the world that R has opened up for me!
A world where Turtles rescue Dinosaurs, and rocket ships with little children in them fly
Where my plebian neighborhood is a wonderland just because of snow ,
Where our 18 dollar Walmart Christmas tree with its tawdry jewels is a thing of promise
Where you jump on trampolines and swimming pools -come rain and snow
Where being in an airplane is a privilege
Where, I , myself have been reinvented
For when I look at myself through R's eyes I do not see an ordinary, weak person
I see a strong and kind woman .. a person both deeply beloved and capable of extraordinary love
The big fallacy is that life after a special needs child is doomed
But this life of mine is proof that it can be full of joy -if you open your heart to the world that your child will create for you
A special needs child ( or indeed any child ) can be your special purpose child .
"Nothing is good or bad .. its thinking that makes it so " says Shakespeare.
"Shee Mother "( sleep with mother ) bargains R craftily from the bathtub
( his Dad usually puts him to bed but R is sulking due to being scolded for leaving the bathtub -streaking through the house wet )
I get ready for his performance extraordinaire .
For R is able to produce tears on demand. I am not disappointed
After none of his tactics work - he holds my face and puts his nose to mine - looking into my eyes - assessing my resolve
"Shee mother" he coos - one last try - rubbing his velvety cheek on mine
I hug the great fortune that being R's mother is to myself- reveling in the sheer deliciousness of his ways- even as I tell him "Shee Pa" ( sleep with Papa)
"Don't worry about us " , I tell our acquaintances with NT kids who see us as hardworking parents with the onerous task of taking care of a handicapped child " we are very happy "
Though they look unconvinced - unable to imagine that we mean it- its the truth
This child - this life - is no burden
This child-my life is a gift
"But this life of mine is proof that it can be full of joy -if you open your heart to the world that your child will create for you"
This is truth.
When we see our kids for who they are and all they offer, when we climb up on the snowy trampolines and meet them there, we will find the joy that is ours waiting to be claimed.
(Linny,Tuck, Tasha, Uniqua, et al live here too)!
Beautiful. Simply beautiful.
Such good reminders. Thank you. =) I have been trying to slow down a little and instead of just going through our day the way I think things should be done, to see things more through Daniel's eyes. When I am able to do that- to jump into his world with both feet, we really connect. I miss that.
Wow your words touched me so.
How your words made me weep happy tears, becuase I "get it."
I am privileged reading your words.
Sometimes things get a bit much to handle..but this sure puts them in perspective..thank you.
Such a beautiful thought on parenting and life. Enjoy every moment and most importantly allow yourself to enjoy every moment. How much of life's enjoyment gets tangled up in how things should be rather than simply how they are? How will I survive without your thoughtful post? I will miss you R!
I just love you. :)
beautiful and inspiring. And I couldn't agree more.
What an unbelievably beautiful and true post. This is one I will refer back to over and over again, especially when I'm tempted to dwell on the "what might have been."
Indeed, being R's mother is a fortune. And I, too, have been reinvented and for that I am truly grateful.
I'm so blessed by your writing and your wisdom.
Is R jumping barefoot in the snow?!?
Nothing can stop him from his beloved activity with Mommy!
"This child and this life is a gift"
And I totally hear you about the persistence thing... my guys can be very persuasive when they get their mind set on something, and if we had a trampoline they'd probably insist on jumping rain or shine too :).
K, you continually inspire and humble me with the way you look at life...
Your post reminds me of something Moat Gandhi once said:
"Any change or reform you make is going to have consequences you don’t like….We must become the change we want to see…."
Your becoming that change is a beautiful thing to see...
Thanks for sharing
K -- could you please email me when you have a chance? I can't seem to find a way to contact you directly. writehopefulparents at gmail dot com.
Just stopped by to say hello, hope all is well!
Just checking in with you. This is such a beautiful post. Funny, how I have a happier life than most people I know. Its all how you look at things. Have a great holiday season. Love and best wishes!!!
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