Yesterday I was able to spend some time on the internet surfing around. I wanted to see what the buzz on the web was concerning Apraxia. How were other mom’s coping, what could I do to help? I was able to find plenty of other parents blogging about their Apraxic children. Mostly heartwarming, seeing little faces knowing they are going through the same thing Luke is- people trying to help other people! People looking for answers. But I came across one mom that blew me out of the water, and I’m hoping not to many other parents come across her blog. Unfortunately, if I found her, so will others. She wrote a letter addressed to Parents of Apraxic children. I have to admit she did forewarn that she is a no nonsense person, she says it like it is. I could of stopped there but of course it only drove my curiosity further. She had plenty to say, but the just of it was something like this; Plan on selling most of what you own to pay for your child’s therapy, plan on shopping at the thrift stores because you will no longer be able to afford new, plan on moving most likely far to find a therapist, Give up the notion that your child will ever go to public school, expect other problems to manifest, plan that 10 years from now you will still be hard at work. She said, everyday, every moment that goes by is just another day wasted, another day that your child’s peers will be farther and farther ahead. She went on and on and I get it, I GET IT! I know what she was saying and yes I was once again hit with the reality of what we are facing. BUT, wait a minute, these children have to be given a childhood too! It cannot always be about the work, the therapy, and the treatment. Every Child does deserve a voice but we can only do our best! I would never compare Luke to his peers, his peers don’t have a serious neurological speech disorder. I try not to compare any of my children to their peers because I can only expect them to do their personal best. His peers have already left him in the dust, why would I spend a second trying to hurry him to catch up! Luke may never catch up. And here’s another big BUT, I sat at the Nancy Kaufman conference and watched video after video of children with all kinds of different disorders learn to talk. I saw footage of a young boy with Apraxia who grew up to attend University and speak 3 different languages! He ended up with a degree in communications. So I don’t mean to go off on this women of the web, but I don’t ever want anyone who stumbles across my blog to think there is no hope. There is always hope! I’ve seen it with my own eyes! And if there happens to be a day here or there that I don’t work on flash cards and speech home work with Luke, I don’t consider that a day wasted because there is other languages that I want to teach my son, the first and most important one is LOVE!
I want to leave you with a beautiful poem, I have read it over and over, and it touches my heart every time!
Just for this day.
Just for this morning, I am going to smile whenever I see your face.
and laugh when I feel like crying.
Just for this morning, I will let you wake up softly, all rumpled in your
flannel and I will hold you until you are ready.
Just for this morning, I will let you choose what you want to wear, and
smile and say you’re beautiful.
Just for this morning, I am going to step over the laundry, and pick you
up and take you to the park to play.
Just for this morning, I am going to eat a huge breakfast , with bacon
eggs, toast and waffles, and you don’t have to eat any.
Just for this morning, I will leave the dishes in the sink, and let you
teach me how to put that 100 piece puzzle together.
Just for this afternoon, I will unplug the telephone and keep the
computer off, and sit with you in the garden blowing bubbles.
Just for this afternoon, I will not yell once, not even a tiny grumble
when you scream and whine for the ice cream truck, and I will buy you one if he comes by.
Just for this afternoon, I won’t worry about what you are going to be
when you grow up or who you might have been before your diagnosis.
Just for this afternoon, I will let you help me bake cookies, and I won’t
stand over you trying to ‘fix’ things.
Just for this afternoon, I will let you put all kinds of barettes in my
hair, and put lipstick on my face, and I will tell you how pretty you have made me look.
Just for this afternoon I will take you to McDonalds and buy us both a
Happy meal so you can have both toys.
Just for this evening, I will hold you in my arms and tell you a story
about how you were born, and how much we love you.
Just for this evening, I will let you splash in the bathtub and not get
angry when you throw water over your sister’s head.
Just for this evening, I will let you stay up late while we sit on the
porch swing and count all the stars.
Just for this evening, I will bring you glasses of water, and snuggle
beside you for three hours and miss my favorite show on t.v.
Just for this evening, When I kneel down to pray, I will simply be
grateful for all that I have and not ask for anything, except
just one more day.
(copyright Sally Meyer. No portion of this poem may be reproduced in any form without permission of the author. e-mail:rainmom2000@aol.com)
Thank you for allowing me to post this Sally!
