Tomorrow's the Day!

Day 276...another

Another tooth.  Two teeth lost, in as many days.

The tooth-fairy is broke! 

Day 275...It's all happening so fast!

Well, it happened.  McCall lost her first tooth. 
We were driving down the freeway and as I looked in the rear view mirror I saw the most horrified look on her face.

"My tooth"...she says.

Queue the screaming. (Me of course.)  Bodie yells, "It's bleed, it's bleed", obviously not the correct grammar for the situation, but he's 3 :)

As we arrive at Nanny's house, McCall shows her the blank spot in her mouth and as calm and as serious as can be she says..."it fell out when we were driving.  Mama's a crazy driver."

What?

So I had to whip up the tooth fairy pillow I've been going to make...

McCall has never fallen asleep so fast.  This morning she woke up and asked me to smell her bed.  She said it smelled like chocolate!?!  Daddy, I mean the tooth fairy, must have been eating some Valentine candy before visiting her!

The Global Genes Project

Monday, February 28, 2011, is the 4th annual Rare Disease Day — a day when people worldwide will show their support for the millions of people suffering from rare diseases and disorders.  Rare Diseases affect over 250 million people worldwide, 30 million people in the US alone, with 75% affecting children. There are over 7,000 rare diseases that have been identified, all with very unique needs, but many with little to no support. Angelman syndrome is one of the 7,000 rare diseases. In order to really help the rare disease community and those affected by Angelman syndrome, we need to be viewed as one: one community of millions, impacted by disease. Rare disease is not so rare, and the community is much more likely to garner the support, attention, and resources it needs if it is viewed as one. It is estimated that 80% of rare diseases are caused by gene defects, and according to the Kakkis EveryLife Foundation, 95% of rare diseases do not have any FDA approved drug treatments. Since the Orphan Drug Act was enacted 28 years ago in January 1983, only 352 new drugs have been approved by the FDA for all rare diseases combined despite incentives by the federal government.

The Global Genes Project™ exists to unify, support, build awareness and raise much needed funds for those affected by rare disease. The Global Genes Project™ campaign broadly promotes the needs of the rare disease community as a whole, engaging the general public, garnering corporate support under the unifying symbol of hope: the blue denim ribbon.

Join us. Spread the word. It's as easy as wearing a pair of jeans for the "Wear That You Care" Denim Awareness Campaign for Rare Disease Day...I know my GAP family will be supporting the movement!

The ASF has partnered with the Global Genes Project to make personalized posters...Rhys has his very own.  If you want to have your very own Rhyer poster...let me know and I'll get you one to support a great cause.  Awareness is the first step.

The The Global Genes Project is a leading nonprofit rare disease advocacy organization.  "Wear That You Care™" Denim Campaign will support Rare Disease Day 2011 and to call attention to the global drug development crisis facing millions of people afflicted with rare diseases.  The "Wear That You Care™" Denim campaign is simple — all across the world people can participate in supporting the rare disease movement on Rare Disease Day 2011 by wearing a Denim Jeans Ribbon™ and their favorite pair of jeans — vaqueros, cowboybuksers, niuzaiku, farmernadrag, or dungarees ...it dosen't matter what you call them, just wear them!

"Spurring development of new treatments for thousands of rare diseases is one of the most pressing health care challenges we face in the world today," said Nicole Boice, Founder, Global Genes Project.  "The goal of our effort is to create synergy among all constituents committed to finding treatments for the millions of people living with rare diseases and to educate the public on how genetics can influence their health or lead to chronic or life threatening diseases."

Since the launch of the Global Genes Project and Hope – It's In Our Genes™ awareness campaign in February 2010, more than 150 leading corporations, organizations, hospitals and nonprofits have signed up to support rare disease awareness and educational efforts. Organizations that recently joined the effort include: Angelman Syndrome Foundation, Batten Disease Support and Research Association (BDSRA), Biotechnology Industry Organization (BIO), Children's Hospital Research Center Oakland, Healthline, Illumina, Medpedia, MLD Foundation, National Society of Genetic Counselors, Pfizer, Progeria Research Foundation and RemedyMD. The Global Genes Project has also added new supporters from China, Serbia and Turkey.

"Many rare disease foundations are starting to understand our core message -- we're all in the same boat when it comes to drug development for our individual rare diseases and there are few options in sight for millions of people," added Boice. "It's time to band together to make our voices heard and to push for major legislative initiatives that provide novel incentives to researchers and industry so they will invest the time and capital needed to develop new treatments."

A number of "Wear That You Care" denim awareness events are currently being organized around the world and hundreds of volunteers, coordinated by the Global Genes Project, are working on a multitude of outreach activities leading up to Rare Disease Day 2011.  Some of the events and activities in progress for Rare Disease Day 2011 are as follows:

• The National Institutes of Health Office of Rare Diseases Research (ORDR), in association with the Global Genes Project, is encouraging all attendees to wear their favorite pair of jeans to their day-long Rare Disease Day 2011 celebration at the Lipsett Amphitheater at the NIH Clinical Center.  Dr. Francis S. Collins, Director of the National Institutes of Health and one of the leaders of the Human Genome Project (HGP), is expected to address attendees.
• Pfizer's rare disease research and development unit based in Cambridge, MA, will be encouraging attendees at their Rare Disease Day 2011 event to wear jeans to help raise awareness.  In June 2010, Pfizer established a new research unit devoted to developing new biologics to treat rare diseases.
• Shire, one of the world's leading specialty biopharmaceutical companies, will encourage employees to wear jeans to work and plans to hand out over 5000 denim blue ribbons to employees at various corporate locations worldwide.
• Over 200 volunteers, including numerous children, have made over 20,000 Denim Jeans Ribbons™ that will be distributed to rare disease patient advocacy groups, pharmaceutical companies, biotech firms, schools and hospitals on Rare Disease Day 2011. Blue denim ribbon making efforts will continue leading up to February 28, 2011, with a goal of reaching 50,000 handmade ribbons.
• Over 300 volunteers ranging from jewelry designers to crafters are working on the 7,000 Bracelets for Hope™ campaign.  These blue denim inspired "cause bracelets" will be distributed on Rare Disease Day 2011 to children and families battling rare diseases and serve as symbol of hope to find treatments and cures.
• A number of schools have signed up to host "Wear That You Care™" denim awareness days and plan to distribute Denim Jeans Ribbons™ in an effort to support the rare disease community.

(SOURCE The Global Genes Project)

Day 264...You have arrived

So we loaded up the family and headed north.  We drove, and only stopped four times to use the bathroom or throw-up. (Note to self, do not give a 3 year old a giant Gatorade until his bladder grows...and investing in motion sickness bracelet's for sissy might be worth it.) The trip up was exhausting, the packing and prep even more so...


Then the voice of the navigation system. It was choppy and robotic, but do you know what she said?

You. Have. Arrived.

Bitch knows what she's talkin' about.

We spent a wonderful fun-filled weekend enjoying the McCall winter carnival and all that lovely little town has to offer.  We had a blast and are high on life and mountain air.  We are so fortunate to have such a beautiful haven to visit, relax, unwind.
The snow sculptures were in celebration of "100 years of McCall".  The closing ceremony fireworks were some of the best I've ever seen.  Rhys laughed his way through the entire fireworks display!
So after sledding, eating, laughing, and lots (and lots) of hot chocolate it was time to head home.  Bye pretty, peaceful cabin.
Tonight we return home and amid the mess of a suitcase heaped with dirty laundry and a bedroom begging for a four-hour cleaning blitz, I heard another voice, but instead of the robotic GPS, it was another spoken quietly within me.

You. Have. Arrived.
Home. To messes and to-do lists, but to where I belong.  Let the week begin!

Day 259...My Big Girl

Last week was hectic.  Not fun hectic, like parties and playdates, but annoying hectic like doctors and work.


But what I learned last week was...that it is official.  I swear it has happened so fast...it happened all at once...she just became big. McCall is growing up too fast.  It is as if we've been traveling down the same road from the day her slippery six-pound body was placed in my arms, and today that road abruptly ended and a new one began. It's a different road. She's a girl. Not a baby. Not a toddler. A kid...a BIG kid.  Let me give you an example...


report card.  She brought home a REPORT CARD!  "McCall is a pleasure to have in class."  I could have probably handled the report card, except for the fact that the dentist appointment last week revealed...



two loose teeth.  What. Is. Happening?  

I didn't have to stew so much on decisions regarding how to take care of this:

You pour your soul into them, hoping every internal thought and feeling of goodness and love seeps into every bone in their body, every cell in their frame so that they feel it...so that they know it...so that someday, when they are ten and they are big and they are beginning the journey down the new road, they will be equipped with everything they could possibly need to thrive.
I knew it was coming. I could feel it these last weeks...the way her sassyness is multiplying and her new found understanding of higher-level concepts is manifesting itself in new challenges.

She locks the door on us to keep us out of her bedroom. She asks questions we're not so sure how to answer. She gets embarrassed and her cheeks flush. She's not so sure having a pink blanket is cool anymore.

And I find myself thinking deeply more. I want to explain the world to her. To teach her kindness. To tell her why things happen in a way that makes her want to be good and loving. To show her by example that confidence is power...that the world is her oyster and she is its pearl. But she's sassy...sometimes mean.  She and I don't always see eye to eye.  I don't always know how to handle this which leads to late-night discussions with Rob where we review our day's parenting like a judge's panel. Probably shouldn't have given that to her. Maybe we should have said this... Did you see how sad she was? Did you hear what she said? Maybe I should have been harder on her. Maybe I was too hard.

And I guess you just have to trust that you are doing your best and that for every mistake you make, there are a thousand more victories. My parents did it (and did pretty good...thanks Mom & Dad), their parents did it, and so on and so on.  You grow in the fact that, in setting an example, in laying the foundation for your littles, you become better. You have to live what you want to teach them because the apple doesn't fall far from the tree, and I want my apples to be good and kind, giving and understanding. I want my apples to be strong and independent and yet sensitive and tender-hearted. Yes, I will be a strong tree--so strong indeed that my apples can roll further and further away from me, exploring their world, and they will know my presence, quietly and assuredly.  I'm thankful that the "trees" in my life taught me this...and I guess I'm hopeful that I can get this through McCall's thick little head.

I say this all like I know what I'm talking about...like I have it figured out and it comes easy for me.

But then there was Monday...but there will always be those days. Hopefully, most days won't involve McCall going to the nurse only to inform her that she needed as bandaid because "my mom cut me, and it wasn't an accident".  By the way...I nicked her with my fingernail...and is was an accident.  Drama queen.

McCall, I love you. I am so proud of the girl you are becoming.  Oh, and the tooth fairy doesn't carry 20 dollar bills...just so you know!