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Gifts : Mothers Reflect on How Children with Down Syndrome Enrich Their Lives

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Thursday, August 11, 2005

Chillin' With Chalk for Patrick


I met Patrick's mom online in 2001, and we have been friends ever since. On May 17th, 2002 Patrick was diagnosed with Leukemia. We were there, albeit on the internet support board, when Patrick's mom found out. At the time of discovery, she also posted an important date; the date Patrick would finish his treatment. We all encouraged, cried, supported, and sometimes, really didn't know what else we could do to make sure that Patrick made this date. We need not have worried. (Yeah just tell Beth that) but yes, that date has arrived. All signs point to a complete recovery for Patrick.

We received a wonderful announcement in the mail; YOU'RE INVITED TO CHILLIN' WITH CHALK! Patrick's family has decided that they didn't want to celebrate without acknowledging the people still fighting their own battle with leukemia. So after a night of just happily drawing on their own back patio with sidewalk chalk, an idea was born, and it happens Saturday August 13th!

When: Saturday Morning: 9am-noon August 13th
Where: the Davis Farmer's Market (by the fountains)
What: Get a piece of chalk (for .50cents a piece) and a square of sidewalk and draw a happy, joyful, encouraging picture as they are going to decorate the park!
All money will be donated to the Kaiser Pediatric Oncology Clinic in Sacramento.

Also, although the Patrick announcement didn't say, friends of Patrick have set up an account for donations to the Kaiser Pediatric Oncology Clinic. Just go here for more info.

So Patrick, here's to your well deserved celebration you handsome boy you!

and some words from Beth, Patricks amazing mom

Some thoughts on this amazing day...

Just had to sit down at the computer and get a few things off of the old mind. I think I might sleep well tonight! Here it is...

One thousand one hundred and seventy two days of medicine… monthly chemotherapy treatments in clinic, spinal taps and chemo in the spine every three months, blood draws weekly or bi-weekly or monthly depending upon the numbers and the ever-present worry, the gnawing anxiety of what-if hanging over you like leaking kerosene, just waiting to explode.

One thousand one hundred and seventy two days of leukemia, neutrophils, lymphocytes, monocytes, ANC, broviacs, port-a-caths, hemoglobin, platelets, white cells, blasts, methotrexate, vincristine, decadron, 6MP, leucovorin, septra, colace and mineral oil.

One thousand one hundred and seventy two days of hoping, waiting, measuring, praying, taking temperatures, holding your breath and your life and your dreams in check.

Like a due date for a baby’s arrival, we were given a date. August 2, 2005. Out of nowhere, plucked from some computer program or some medical protocol our lives would hinge on that date. Until that date, Patrick would continue with ongoing, non-stop medical intervention. After that date, like the proverbial checkered flag, it would end.

When we received that date, Jack and Mary Kate were ending third grade and first grade. Patrick was two. Pokemon was the rage; reality TV a novel idea. It was an inconceivable concept... so very far away. Impossible to picture surviving the passing days…it was as if we were given some insane medical obstacle course filled with difficult, arduous personal journeys, poisons, pain, fear, and the ominous unknown. If we somehow could last until August 2, 2005, (that mythical, magical date) we would be given our freedom once again.

One thousand one hundred and seventy two days later we are here. Jack and Mary Kate are now entering seventh grade and fifth grade. Patrick is 6. Reality TV is a stale baguette: rock hard and impossible to enjoy. Unbelievably Patrick has not only survived the passing of days with poisons in his body, he has managed to thrive. He knows his ABC’s, his numbers, his name and the important things like when Barney comes on and how to order a video off of the internet. He has made friends. He has graduated from preschool and begun to learn to swim. He’s done it all with chemotherapy coursing through his body every single day.

He is grace and peace of mind and the power of a positive attitude personified. Although no one would question him if he did, he hasn’t become bitter or jaded or even fearful. Surprisingly, he’s become even more joyful, even more grateful, even more loving. Throughout these one thousand plus days Patrick has led the way. He has shown us the essentials of living while battling a deadly foe: when you’re sleepy, nap, eat only food that tastes good, surround yourself with people you love, swing at a park and dance to great music whenever possible.

1,172 days are over. We’ve been given the gift of tomorrow…no strings attached. We’ll take it! Patrick, baby, here we go! No more counting or hoping…it’s all yours. Go for it!

Thank you Monica for this forum and this special board. It has helped so much over these past 1000 plus days. Your friendship and support along with so many others helped me get through some very dark moments. What a blessing you are in my life. Hugs, Beth and Patrick

so lets post Chillin' with Chalk pictures for Patrick if we can't make it to California go here and provide donations on paypal too if you can. And prayers always.

Update- Beth has a wonderful summary of the day here. What a great day!


bforaker said...

Oh amazing lady, you...were you going to keep it hiding forever? Your blog is wonderful!!! And that special tribute to Patrick just makes me get all goose-bumpy. Isn't it a gift to have a friendship like this? It's so cool! It just continues to make the world feel like a cozier place. THANK YOU SO MUCH! Beth and Patrick

Mauzy said...

Thanks Beth, and hey, if you want to play blogger, just ask Monica or Tara as Tara set me up. I had no clue how to start. You would have so much to share with your education background, wisdom and hey, I would be able to "see" you more too- what a bonus!

Have so much fun tomorrow as you know your family has a special place in our hearts.