Saturday, February 28, 2009
a day of celebration and community!
National Organization for Rare Diseases (NORD)
www.rarediseases.org
World Rare Disease Day website
rarediseaseday.org
Wednesday, February 25, 2009
LOVE by Cirque
this is the show we went to, "Love" by Cirque du Soleil. it was not very accessable and the people were a bit rude (I'll explain another day) but the seats were awesome and the show and music was fantastic!
Tuesday, February 24, 2009
travels and trials
Hello friends!Sorry I have been MIA for a bit, I had an issue with my body punishing me for a few days and then I was away in sunny Las Vegas for a patient advocacy convention! now that I am back I am going to be posting more often, possibly using voice or video when my hands are not behaving.
It's funny being what feels like the only non-gambler in "Lost Wages, Nevada" there was so many other things to do! We saw lions at the MGM, a big statue of liberty at the New York New York casino, we went and saw a great Cirque du Soliel performance.
It was fabulous and the best part was reconnecting with old friends I see once a year at the convention and meeting and giving hope to the newly diagnosed.
I am blessed and very tired.
More posts on the way soon!
Soli Deo Gloria
REformed Girl
Monday, February 16, 2009
bad body/good books
It seems that my body is deciding to continue to be rediculous so I won't be posting again today.
I am an eternal optimist though, this flare has given me an opportunity to do a bit more reading so it's all good.
all the same, I hope I can post again soon dear sweet readers.
God is good , all the time.
Soli Deo Gloria
REformed girl
I am an eternal optimist though, this flare has given me an opportunity to do a bit more reading so it's all good.
all the same, I hope I can post again soon dear sweet readers.
God is good , all the time.
Soli Deo Gloria
REformed girl
Please Hear What I'm Not Saying
My body has decided to not do what I want it to today so I can't post what I'd like. but a friend shared this poem with me and I will share it with you.
Even though it is a bad day, God is so so so good! His grace is sufficient and so sweet.
here's to better tomorrows!
Soli Deo Gloria
REformed girl
Please Hear What I'm Not Saying
Don't be fooled by me.
Don't be fooled by the face I wear
for I wear a mask, a thousand masks,
masks that I'm afraid to take off,
and none of them is me.
Pretending is an art that's second nature with me,
but don't be fooled,
for God's sake don't be fooled.
I give you the impression that I'm secure,
that all is sunny and unruffled with me, within as well
as without,
that confidence is my name and coolness my game,
that the water's calm and I'm in command
and that I need no one,
but don't believe me.
My surface may seem smooth but my surface is my mask,
ever-varying and ever-concealing.
Beneath lies no complacence.
Beneath lies confusion, and fear, and aloneness.
But I hide this. I don't want anybody to know it.
I panic at the thought of my weakness exposed.
That's why I frantically create a mask to hide behind,
a nonchalant sophisticated facade,
to help me pretend,
to shield me from the glance that knows.
But such a glance is precisely my salvation, my only hope,
and I know it.
That is, if it's followed by acceptance,
if it's followed by love.
It's the only thing that can liberate me from myself,
from my own self-built prison walls,
from the barriers I so painstakingly erect.
It's the only thing that will assure me
of what I can't assure myself,
that I'm really worth something.
But I don't tell you this. I don't dare to, I'm afraid to.
I'm afraid your glance will not be followed by acceptance,
will not be followed by love.
I'm afraid you'll think less of me,
that you'll laugh, and your laugh would kill me.
I'm afraid that deep-down I'm nothing
and that you will see this and reject me.
So I play my game, my desperate pretending game,
with a facade of assurance without
and a trembling child within.
So begins the glittering but empty parade of masks,
and my life becomes a front.
I idly chatter to you in the suave tones of surface talk.
I tell you everything that's really nothing,
and nothing of what's everything,
of what's crying within me.
So when I'm going through my routine
do not be fooled by what I'm saying.
Please listen carefully and try to hear what I'm not saying,
what I'd like to be able to say,
what for survival I need to say,
but what I can't say.
I don't like hiding.
I don't like playing superficial phony games.
I want to stop playing them.
I want to be genuine and spontaneous and me
but you've got to help me.
You've got to hold out your hand
even when that's the last thing I seem to want.
Only you can wipe away from my eyes
the blank stare of the breathing dead.
Only you can call me into aliveness.
Each time you're kind, and gentle, and encouraging,
each time you try to understand because you really care,
my heart begins to grow wings--
very small wings,
very feeble wings,
but wings!
With your power to touch me into feeling
you can breathe life into me.
I want you to know that.
I want you to know how important you are to me,
how you can be a creator--an honest-to-God creator--
of the person that is me
if you choose to.
You alone can break down the wall behind which I tremble,
you alone can remove my mask,
you alone can release me from my shadow-world of panic,
from my lonely prison,
if you choose to.
Please choose to.
Do not pass me by.
It will not be easy for you.
A long conviction of worthlessness builds strong walls.
The nearer you approach to me
the blinder I may strike back.
It's irrational, but despite what the books say about man
often I am irrational.
I fight against the very thing I cry out for.
But I am told that love is stronger than strong walls
and in this lies my hope.
Please try to beat down those walls
with firm hands but with gentle hands
for a child is very sensitive.
Who am I, you may wonder?
I am someone you know very well.
For I am every man you meet
and I am every woman you meet.
Charles C. Finn
September 1966
Even though it is a bad day, God is so so so good! His grace is sufficient and so sweet.
here's to better tomorrows!
Soli Deo Gloria
REformed girl
Please Hear What I'm Not Saying
Don't be fooled by me.
Don't be fooled by the face I wear
for I wear a mask, a thousand masks,
masks that I'm afraid to take off,
and none of them is me.
Pretending is an art that's second nature with me,
but don't be fooled,
for God's sake don't be fooled.
I give you the impression that I'm secure,
that all is sunny and unruffled with me, within as well
as without,
that confidence is my name and coolness my game,
that the water's calm and I'm in command
and that I need no one,
but don't believe me.
My surface may seem smooth but my surface is my mask,
ever-varying and ever-concealing.
Beneath lies no complacence.
Beneath lies confusion, and fear, and aloneness.
But I hide this. I don't want anybody to know it.
I panic at the thought of my weakness exposed.
That's why I frantically create a mask to hide behind,
a nonchalant sophisticated facade,
to help me pretend,
to shield me from the glance that knows.
But such a glance is precisely my salvation, my only hope,
and I know it.
That is, if it's followed by acceptance,
if it's followed by love.
It's the only thing that can liberate me from myself,
from my own self-built prison walls,
from the barriers I so painstakingly erect.
It's the only thing that will assure me
of what I can't assure myself,
that I'm really worth something.
But I don't tell you this. I don't dare to, I'm afraid to.
I'm afraid your glance will not be followed by acceptance,
will not be followed by love.
I'm afraid you'll think less of me,
that you'll laugh, and your laugh would kill me.
I'm afraid that deep-down I'm nothing
and that you will see this and reject me.
So I play my game, my desperate pretending game,
with a facade of assurance without
and a trembling child within.
So begins the glittering but empty parade of masks,
and my life becomes a front.
I idly chatter to you in the suave tones of surface talk.
I tell you everything that's really nothing,
and nothing of what's everything,
of what's crying within me.
So when I'm going through my routine
do not be fooled by what I'm saying.
Please listen carefully and try to hear what I'm not saying,
what I'd like to be able to say,
what for survival I need to say,
but what I can't say.
I don't like hiding.
I don't like playing superficial phony games.
I want to stop playing them.
I want to be genuine and spontaneous and me
but you've got to help me.
You've got to hold out your hand
even when that's the last thing I seem to want.
Only you can wipe away from my eyes
the blank stare of the breathing dead.
Only you can call me into aliveness.
Each time you're kind, and gentle, and encouraging,
each time you try to understand because you really care,
my heart begins to grow wings--
very small wings,
very feeble wings,
but wings!
With your power to touch me into feeling
you can breathe life into me.
I want you to know that.
I want you to know how important you are to me,
how you can be a creator--an honest-to-God creator--
of the person that is me
if you choose to.
You alone can break down the wall behind which I tremble,
you alone can remove my mask,
you alone can release me from my shadow-world of panic,
from my lonely prison,
if you choose to.
Please choose to.
Do not pass me by.
It will not be easy for you.
A long conviction of worthlessness builds strong walls.
The nearer you approach to me
the blinder I may strike back.
It's irrational, but despite what the books say about man
often I am irrational.
I fight against the very thing I cry out for.
But I am told that love is stronger than strong walls
and in this lies my hope.
Please try to beat down those walls
with firm hands but with gentle hands
for a child is very sensitive.
Who am I, you may wonder?
I am someone you know very well.
For I am every man you meet
and I am every woman you meet.
Charles C. Finn
September 1966
Sunday, February 15, 2009
Jesus loves you, hurry up!
"4 Love is patient and kind; love does not envy or boast; it is not arrogant 5 or rude. It does not insist on its own way; it is not irritable or resentful; 6 it does not rejoice at wrongdoing, but rejoices with the truth. 7 Love bears all things, believes all things, hopes all things, endures all things." ESV study bible 1 Corinthians 13:4-7
This reading is the goal for our lives.
In my BC (before Christ) years, I do not think this would be probable or possible. never in a thousand years. If I loved it was for the love back, nothing was selfless.
When God opened my eyes..............I remember the moment, the second.
I was staring into the eyes of a man, a wonderful, strong, beautiful, loving, giving man. A man of few words and hard to understand most of the time because of his particular accent, his speech was so hard to decipher the moments he did speak.
Then one moment, out of the blue, he said,
"God loves you and wants to use you for His good purpose. Jesus is waiting, He loves you, hurry up!"
Wow!
BOOM!
It hit me. The message my friends had tried to "pound into my thick skull" for years through prayer meetings, church social outings and the like. It never fit my life. Then all of a sudden, it did!
Did I mention...
the man in question has Down's Syndrome
very few people know what a jewel of a man he is.....
very few people know that he has a profound, profound message......
very few people know or would expect God to be using him for His glory.....
very few.......
but I do..............
Soli Deo Gloria
REformed girl
Saturday, February 14, 2009
Daisies
As a little girl I'd play the game as most little girls do.
I'd sit on the lawn and pluck a perfect daisy from the ground.
he loves me, smile, thinking of a future boyfriend or having someone specific in mind, depending on the year.
he loves me not, frown, but sure that the daisy was right, he didn't love me, couldn't.
"NO ONE COULD EVER LOVE YOU!" the voice in my head would scream, sounding remarkably like my parents " your broken, disabled, ugly, stupid, hateful. no one will ever love you or want to be with you, who would want to date or marry a disabled girl, a stupid girl, a fat girl, a short girl? no-one! that's who!"
It's taken me a long time to tone down that inner voice of learned thoughts (not true thoughts), some days are still a waged battle warring in my head.
Trying to pick the perfect flower with the perfect amount of petals so the answer would always be "he loves me"
Trying to find that perfect flower is like trying to find a perfect man, completely suited to you, that is a daunting job, but not for God.
When you put away your childhood, you put away childish things, that game as well goes in a back closet of my mind but never quite forgotten.
But I have new daisies now, ones with half as many petals, every other petal is missing, the 'he loves me not' ones have mysteriously dissappeared.
Love blindsided me early one morning in December, well even before that I think.
it's not my doing.
it's not his doing.
It is a plan that only can be attributed to God. We praise Him for our relationship and give all glory to the one that made us.
I am smitten.
I am twitterpated.
I am a woman in love.
I never thought that would be me, I thought it was impossible for me. I was told it was impossible.
IMPOSSIBLE!
Nothing is impossible for God.
Soli Deo Gloria
REformed Girl
Friday, February 13, 2009
Love
This week I will try to be blogging about love :)
Not because of Valentines day, which is a completely brilliant marketing scheme and which I don't celebrate. But because of a challenge issued at one of my fav blogs called Chewing The Fat by Dave, I will blog about love and disability.
I think you shouldn't have one day in a year where you show people you love them, but try everyday to show Christ's love to everyone, everyday.
So I will start tomorrow.
blogging that is
not loving
I'll do that everyday! :)
Soli Deo Gloria!
REformed Girl
PS thank you to all my subscribers! :) I can't believe I have 10! this blog started as something I wasn't sure I would enjoy but I really do enjoy it! I enjoy your comments (hint hint) and your company!
Thanks!
Monday, February 9, 2009
Saturday, February 7, 2009
proud frontline worker
I am a front line worker
I see it everyday
the valientcy of life
and living everyday.
I am a front line worker
the one who hears the hurts
I see the beauty
where "the others" see no worth
I am a front line worker
people say I'm special to do this
but I'm not really anything much
this is why I exist
I am a front line worker
I get paid with triumphs and smiles
when I help someone to learn independence
or help them dress with style
I am a front line worker
I get mad when people just don't get it
that the people I care for, are people
give them a little credit
WE are front line workers
WE make no decisions
that is for "the higher-ups"
WE ALL just have to live it!
This is a poem written in frustration on behalf of the many "front line" workers of people with developmental disabilities and more importantly the people themselves who have to trudge though rules and royal decrees by people in offices who don't do what we do, who don't know our clients as well and who are downright punitive at times.
Rules and decrees that smash down quality of life in favour of a life watered down for our clients.
I am disgusted. I am angry.
I am saying enough!
Soli Deo Gloria
a very angry (at the moment) REformed girl
Have you hugged a calvinist today?
I am a calvinist.
I believe in TULIP and follow the 5 Solas with every fibre of my being.
When I tell people I am a calvinist, they say, "No, you aren't! are you? you're too nice to be a Calvinist!"
I chuckle about this every time but then I wonder, in our rigidity of doctrine and Sola Scriptura, do we forget the people we are dealing with, in relationship with, living with are also people who require our kindness.
we don't have to agree on doctrine, (or lack thereof) and I am not saying one can never be rude or have a bad day, but we need to treat people nicely.
I , too, have met my fare share of unkind people who happen to be calvinists, that is why I am filled with such wonder and praise that God kept working on my heart to reveal the truth of the gospel to me, because the first peoples I have met in my life who are calvinists had nothing but distain for me as a catholic.
I am just saying lets try not to tar and feather all people of a particular group as the same.
We are told not to stereotype people but so far what I have heard is that it is ok to stereotype calvinists, hence the statement, "you're too nice to be a Calvinist!"
so my question to you is.................................
Have you hugged a Calvinist today?
Soli Deo Gloria
REformed Girl
Thursday, February 5, 2009
tall kids and short me
I love children.
Being a little person (yes I am 4'9"1/2) kids seem to relate to me in a unique way and I love it.
When I meet up with a child that I have known for a while, my first question is "Are you taller than me yet?"
My nephew once asked me why I ask this and why I was so excited once he was taller than me (for the record I think he was 10 when he was taller than me, my almost 8 year old neice is almost there)
I always say "I am glad you are growing, both in height and in mind, you are growing into the beautiful person God has planned for you to be. I didn't grow in the regular way when I was growing up and I am very glad to see that you are. I thank God for you and your healthy growth" (or something along those lines)
occassionally I get questions about what it was like not to grow "properly" or if it makes me sad.
I am rarely sad and never about my health situation(s).
God made me this way, why would I complain?
Being a little person (yes I am 4'9"1/2) kids seem to relate to me in a unique way and I love it.
When I meet up with a child that I have known for a while, my first question is "Are you taller than me yet?"
My nephew once asked me why I ask this and why I was so excited once he was taller than me (for the record I think he was 10 when he was taller than me, my almost 8 year old neice is almost there)
I always say "I am glad you are growing, both in height and in mind, you are growing into the beautiful person God has planned for you to be. I didn't grow in the regular way when I was growing up and I am very glad to see that you are. I thank God for you and your healthy growth" (or something along those lines)
occassionally I get questions about what it was like not to grow "properly" or if it makes me sad.
I am rarely sad and never about my health situation(s).
God made me this way, why would I complain?
Soli Deo Gloria
REformed Girl
Tuesday, February 3, 2009
bring on the rain
this has become one of my new favorite songs.
here are the lyrics:
I can count a million times
People asking me how I
Can praise You with all that
I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings
You glory And I know there'll
be days When this life brings me pain
But if that's what it takes to
praise You Jesus, bring the rain
I am yours regardless of the clouds that may
loom above because you are much greater than
my pain you who made a way for me suffering
your destiny so tell me whats a little rain
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings
You glory And I know there'll
be days When this life brings me pain
But if that's what it takes to
praise You Jesus, bring the rain
Holy, holy, holy
Holy, holy, holy
is the lord God almighty
is the lord God almighty
I'm forever singing
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings
You glory And I know there'll
be days When this life brings me pain
But if that's what it takes to
praise You Jesus, bring the rain
everybody singing
Holy holy holy
you are holy
you are holy
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings
You glory And I know there'll
be days When this life brings me pain
But if that's what it takes to
praise You Jesus, bring the rain
it's become all I want to say right now.
Soli Deo Gloria
REformed Girl
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