Help Me!
When your child is diagnosed with a life-threatening disease...
and you are told that there is no cure,
and you are told about multiple brain tumors,
and you are told that he will have kidney cancer one day,
and you are told that tumors will also likely grow in his retinas, adrenal glands and pancreas,
and you are told that one day, when he is still younger than you are now, he may be blind or disabled or dependant on dialysis,
and you are told that the only treatment to date is surgery because there is no cure,
...you have to make some life-changing choices.
One choice that I've been faced with is my comfort zone. I'm private by nature. I'm quiet. I don't like to take chances. I don't like to offend. I prefer safety and predictability. My world revolved around my house, a good book, my job, and, most importantly, my children.
But when Steven was diagnosed, I had to make a choice to extend my comfort zone and be a little more brave than I've ever been before.
When your child is diagnosed with a life-threatening disease...
and you are told that there is no cure,
and you are told about multiple brain tumors,
and you are told that he will have kidney cancer one day,
and you are told that tumors will also likely grow in his retinas, adrenal glands and pancreas,
and you are told that one day, when he is still younger than you are now, he may be blind or disabled or dependant on dialysis,
and you are told that the only treatment to date is surgery because there is no cure,
...you have to make some life-changing choices.
One choice that I've been faced with is my comfort zone. I'm private by nature. I'm quiet. I don't like to take chances. I don't like to offend. I prefer safety and predictability. My world revolved around my house, a good book, my job, and, most importantly, my children.
But when Steven was diagnosed, I had to make a choice to extend my comfort zone and be a little more brave than I've ever been before.
*I had to be brave and fly to strange airports and jump on a shuttle even though I had no idea where the shuttle stopped or what the shuttle looked like.
*I had to be brave enough to argue with insurance companies and hospitals for mistakes that they made in referrals.
*I had to be so brave and fly half way around the world, trust a man named Percy, exchange money, hang on to three kids who look left when they cross the road, navigate a new subway system, and still be brave enough to go to a ticket window and ask for soccer tickets from someone whom I had most likely offended a few weeks before.
*I've had to be brave and question and even correct an ophthalmologist who knew nothing of this disease.
*I've had to be bold and insist on tests that were scoffed at by primary care physicians.
*I've had to be super brave and return a call to a secretary that I knew was treated poorly and unfairly by Dale, and then I had to eat dirt and apologize for Dale's uncouth behaviour because that secretary happens to work for a doctor that we trust.
*I've had to be bold and insist on tests that were scoffed at by primary care physicians.
*I've had to be super brave and return a call to a secretary that I knew was treated poorly and unfairly by Dale, and then I had to eat dirt and apologize for Dale's uncouth behaviour because that secretary happens to work for a doctor that we trust.
*I've had to be brave and tell strangers about the scars and not get teary, because the last thing that I want is for Steven's life to become a sob story.
*I've had to be brave and call a newspaper editor and remind her that there was once an interest in an article about Steven and this disease.
*I've had to be brave and call a newspaper editor and remind her that there was once an interest in an article about Steven and this disease.
*I've had to be brave enough to spend nights in the ICU, helping my son turn to a different position while avoiding the countless lines, tubes and stitches that are attached to his body.
*I've had to be very brave and air my ultra-private soul to the whole wide world.
Oh yes, I've had to make choices to go beyond my comfort zone.
And now I'm stretching my comfort zone once more and being very brave once again, because on August 11th, here in Valrico, Florida, we will be hosting...
a pancake breakfast!!
It's a fundraiser, friends, that will benefit research.
Research to find a cure for my son.
And my worst nightmare is that we'll have food left-over at 11:00 a.m. My biggest dream is that at 9:30 a.m. we'll be sending Dale down to grocery store to pick-up more batter because the turn-out is so much more than I'd ever expected.
So...
If you are family,
please mark the date and attend.
If you are a family friend,
please mark the date and attend.
If you work with me,
please mark the date and attend.
If you work with Dale,
please mark the date and attend.
If you work with Nana, Bossie, Nuni or Pap,
please mark the date and attend.
If you go to church with us,
please mark the date and attend.
If you go to the church where I work,
please mark the date and attend.
If you have ever taught Steven,
please mark the date and attend.
If you've been involved in Steven's soccer,
please mark the date and attend.
If you've played baseball with David or Dale,
please mark the date and attend.
If you've ever danced with Mary,
or just enjoyed her pretty little smile,
please mark the date and attend.
If you've had a child in my class,
please mark the date and attend.
If you plan on vacationing in Florida,
do it the second week in August and...
please mark the date and attend.
Oh yes, I've had to make choices to go beyond my comfort zone.
And now I'm stretching my comfort zone once more and being very brave once again, because on August 11th, here in Valrico, Florida, we will be hosting...
a pancake breakfast!!
It's a fundraiser, friends, that will benefit research.
Research to find a cure for my son.
And my worst nightmare is that we'll have food left-over at 11:00 a.m. My biggest dream is that at 9:30 a.m. we'll be sending Dale down to grocery store to pick-up more batter because the turn-out is so much more than I'd ever expected.
So...
If you are family,
please mark the date and attend.
If you are a family friend,
please mark the date and attend.
If you work with me,
please mark the date and attend.
If you work with Dale,
please mark the date and attend.
If you work with Nana, Bossie, Nuni or Pap,
please mark the date and attend.
If you go to church with us,
please mark the date and attend.
If you go to the church where I work,
please mark the date and attend.
If you have ever taught Steven,
please mark the date and attend.
If you've been involved in Steven's soccer,
please mark the date and attend.
If you've played baseball with David or Dale,
please mark the date and attend.
If you've ever danced with Mary,
or just enjoyed her pretty little smile,
please mark the date and attend.
If you've had a child in my class,
please mark the date and attend.
If you plan on vacationing in Florida,
do it the second week in August and...
please mark the date and attend.
If you have VHL or know someone who does,
please mark the date and attend.
If you've ever been affected by cancer,
please mark the date and attend.
If you only know Steven through online stories,
please mark the date and attend.
If you plan on attending,
please tell five families,
and have them mark the date and attend.
Research and a cure.
Help Us with Our Dream!
(More details to come.)
8 comments:
I live in California... I really would like to make a donation. How can I do this? My email address is marladreyfusmail@yahoo.com
Please ~ I really want to do my part in helping find a cure for your son. Your story has touched me a great deal...
Marla,
Thank you so much. I need to figure out a way to make online donations...and as soon as I sit down and figure that out, I'll post it on the page!
Thanks again!
I will be there for sure. I will let all my friends know about it also. I know we'll have a great turnout!
I wish I lived closer :-)
I am in Norway, but, after reading alot from your blog today, my prayers are with you all.
I marked my calendar! Tell me what else I can do.
Love, Aunt Judy
I wish I could come! But I am with Marla...I would love to make a donation of some sort. Please let me know anything else I could do! This is such a fantastic thing you are doing.
If only I lived closer I would come and help you make pancakes and wash the dishes afterwards!
Where do I make a donation?
ok I would eat a million pancakes if I could but can't...I look forward to making a donation and will check in off and on to see how and if you've figured out a way;)
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