In order to raise funds for the 1P36 Conference this year, we have decided to hold a "Phantom Tea." How it works is you donate any amount of money, we send you a tea bag and Thank You card from Zoe, and you drink the tea on the designated day. We decided to make August 1st the designated day since that is one of the conference days. That way you can feel connected to Zoe who will be playing with her 1P36 friends while you enjoy your yummy tea. The money will be used to pay for the speakers, room fees, etc at conference so the amount that the families have to pay will be less. This will be our third conference and so far we have found going to conference to be such a valuable experience. We get so much out of being around other people who know exactly what it is like to raise a child like Zoe.
Zoe is happy to recieve donations via our address. We are also working on a Paypal possibility, so we will let you know if that works out. At this point in time our groups paperwork for charitable organization status is still pending, so we don't think we are able to give tax receits yet (though we might be able to by years end, so we will try to do so by then if we can) Should you wish to donate to her tea please contact Zoe's mom or dad via our e-mail at
rossgf2@yahoo.ca.
Thank you for any amount you are able to donate. No amount is ever too small. So here goes the cheesy poems meant to bring tears to the eyes and make you open your wallets :)
WELCOME TO HOLLAND
by Emily Perl Kingsley.c1987 All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go.
Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
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And if that didn't get you- here is another one:
What does it mean to be the parent of a child with a heart defect?By Anna Marie Jaworski (1996)
It means going into your baby's room a dozen times a night just to check and see if he is breathing. It means standing over the crib and watching for the chest to rise and fall and when you don't see it move you begin to panic and put your head down close to the baby's face to try to hear him breathe. It means that when you don't see the chest move and you don't hear the breathing (because your own heart's beating is drowning out any other sound in the room) you put your finger under the baby's nose to feel the warm air on your finger - until you wake the baby and he stirs - and you're thankful so thankful that he's still with you.
It means waking up with a start every morning, jumping out of bed and running to your baby's room wondering why he isn't crying yet?It means feeling a huge sense of relief when he hears you and opens his eyes and smiles, It means saying a prayer of thanks for another day.
It means measuring out his medication and panicking if he spits some of it out, How much did he spit out anyway? 1cc? 2 or 3? And wondering if you should guesstimate how much more he should have and worrying about overmedicating. It means checking his nailbeds against your own to determine how blue he is today, It means asking your husband, your mother, your sister, "Do his lips look blue to you?"
It means snuggling him in an extra blanket for fear he wont be warm enough. It means worrying that even a sniffle could cause an infection that would harm the heart. It means taking your baby to the doctor and then worrying that the baby will get something even worse from being in the waiting room, so it means walking back and forth and back and forth in the corridor until the nurse calls your baby's name and takes you straight back to the examination room.
I means knowing that everyday is a blessing and a gift, it means knowing that you are the luckiest person in the world just to be a parent, It means cherishing every moment, every breath with such an intensity that you feel tears come to your eyes for no apparent reason. It means praying for a miracle to save your baby's life.It means praying that your marriage is strong enough to endure the hospitalizations, separations, and the grief. It means your own heart knows a pain no parent should know. It means feeling weak and helpless and angry and depressed because your child's fate is out of your hands,
It means feeling strong and determined and brave because you know you have to be. It means your love knows new unlimited boundaries, it means your pride in your child's accomplishments is unparalleled, It means your pain has taught you a deeper sense of compassion and understanding than you ever imagined. It means we are united by the same feelings, it means that we all know the mixed up emotions of living with death-but more importantly of living with Life. It means that even though we are strangers … we are more to each other than friends could ever be
