Hi, my name is Natalie and I'm a precocious little 8-year old girl whose smile is infectious for all that know me. If you are reading this you're probably friends or family of my parents, or maybe you are my friend. If you are not you will be by joining me on this journey.
This site is going to help the people that love me tell you, my friends, how my journey is going. So please, stick around, pray hard and help me get better.
6 months- Remembering, celebrating, honoring & making a difference
Nov 2, 2013 9:13am
Hard to believe it's November- the color of the leaves on the trees is phenomenally beautiful, the best we've seen in years which tells me our Natalie is up there taking charge & running the show already. Every bit of this is hard including just being normal.6 months ago today (November 7th) was the last day Natalie got up, the last day she talked, walked, smiled. Remembering lasts is still so surreal. However remembering is soooooo important, it helps us keep going. So does celebrating firsts and we have so many things to celebrate. Coming up we have Meg's 1st birthday and one month from today our first marathon. We made it through our first Halloween and are preparing for our first Thanksgiving then our first Christmas. Every first is missing something, someone and that missing piece is HUGE.
Team Natalie has grown to include those who saw her everyday & knew her better than anybody and those who never met her in person but who naturally joined the Team through their connection to Nat through us, her grandparents, our friends, extended family, co-workers & many, many more. All of you probably know that Natalie LOVED Halloween! So naturally this has been a tough week. Tough in that we miss the absolutely genuine & raw love Natalie put into developing & creating from scratch her Halloween costume ideas & tough in seeing so many of her hundreds of friends & family celebrate La Dia De Los Muertos without her.Last year October 31 represented a milestone, the day she "really" came home. The two worlds merged w/ her best St. Jude day folding into her first day at home. Two trick-or-treats divided by hundreds of miles & one plane ride but both emerged in the happiness of showing off perhaps her best & unfortunately her last costume creation- the triple layered birthday cake. So while last October 31 brought so much pleasure, this one brought a lot of sadness.For those that have lost loved ones you know how everyone talks about the difficulty of holidays & generally you assume they are talking about Thanksgiving, Christmas, birthdays & anniversaries. But perhaps surprisingly I woke up w/ tears in my eyes on Halloween & they continued throughout the day. As I've come to learn the hardest days include some of the best memories & all you can do is do your best to focus on the good & let it triumph over the sad. So our Thursday was blessed to include Jack the Werewolf, Emily the Pop Star & Meg (Natalie's 11+ month old puppy who is just shy of her first birthday) the Police dog. Daddy even got in on the act in honoring Natalie by creating his own "simple" costume w/ $2 & 5 minutes of time to become the Great Pumpkin. Natalie's friends came to visit & reminded us that she's here & part of their lives every single day, never leaving their side. Don't ever underestimate how great the smile of a 9-year old can be, especially when they sheepishly tell you that they think of their friend every day (when you presume they stopped thinking of her on May 11, 2013).The problem with blogging on her so infrequently is that you have waaaaaaay too much to say once you do. Many people ask all of us "how are you doing?" The askers probably know the answer & fortunately for many we answer the question based on our emotionally compass that day but most of the time the answer of "okay" is an honest answer. There are days when we all cry- individually, together, sometimes both. There are other days when everything feels totally fine. Today is a good day.One of the things that keeps us moving forward is our absolute commitment to making a difference in the fight against pediatric brain rumors & other cancers. Hating this disease is easy but figuring out the right way to disburse your energy in the most effective & productive way is a full time job. Unfortunately (or maybe fortunately) we can't drop everything the way we want to & focus solely on changing the outcomes for other DIPG patients & their families. But, we will continue to do every little bit we can as time permits w/ the goal of working smarter rather than harder to make a difference.The best way we can do that is in providing all of you that are members of Team Natalie w/ information and opportunities to help. Help us raise awareness, raise funding, unite families that are as passionate as ours, get congressmen & senators to pay attention, find private dollars to compliment public in a world full of angst about non-profits & whether they can properly use the dollars we donate to find cures & improve treatments instead of funding salaries or other non-essential expenses.
We're still reviewing all our options to identify our best option in order to make the biggest difference in this battle. This may include forming our own foundation or supporting existing organizations that we feel are truly committed to battling pediatric brain tumors. In the mean time we are continuing to support the organizations that have meant so much to us throughout our journey including St. Jude where they have hundreds if not thousands of medical professionals working to find cures & save children's lives. There are a couple St. Jude fundraising events coming up that we'd like you to consider supporting.
The first is the St. Jude Give Thanks Walk which is scheduled for Saturday November 23rd. This event involves individuals & teams participating in a fundraising & awareness walk in various cities around the country. Last year our college friend Tricia organized Team Natalie for the Kansas City walk and we were so honored to be part of the largest team participating in the walk. The more than 80 strong ranged from as young as 1 to as old as 72, it included friends and family from hundreds of miles away & just around the corner. Together we raised more than $13,000 which was the most of any team in the Kansas City walk.
Team Natalie has re-upped for the 2013 walk and while we don't expect to see nearly as many people this year it means so much that any of you who is willing and able joins us on Saturday the 23rd. You can choose to raise money if you want or you can just come out and walk. Please click on this website for more information & to register to join us. http://fundraising.stjude.org/site/TR/Walk/Walk?team_id=40191&pg=team&fr_id=8289
If you have any trouble accessing the link please let us know & we'll send a separate link.
Our second and possibly biggest event is the Memphis St. Jude Marathon on Saturday December 7th. That's right, I said MARATHON! We understand this to be a very special event and several Team Natalie members have committed to participate in the various races associated with the St. Jude Marathon this year. The range from Natalie's Uncle Taylor who will complete his first ever full marathon to friends Sue and Andrea that are doing the 1/2 marathon on down to Natalie's cousins Gabe & Grady along w/ their mom Aunt Jessica who will do the 5K. Jack & Emily are going to join their friend Caroline and Miss Kerry as well as their Granny Lu & Poppa Gale in the 1 mile Family Fun Run/Walk.
Ashley and I formed a 5 person relay team to do the full marathon with Ashley running the opening leg and me the finishing leg. My first training exercise started on the morning of Natalie's memorial service & I've continued somewhat consistently toward being ready to complete my 6.55 mile leg in my first ever organized race. It has been challenging & rewarding but nothing I face can ever be as hard as what Natalie endured.
Collectively the above referenced friends and family as well as several unnamed friends have formed our St. Jude Marathon Team Natalie & have been raising money for the past couple months. We have a Team page where you can sign in and make donations as well as provide support & encouragement throughout our training. In just the past couple days we surpassed or original goal to raise $10,000. An e-mail update from St. Jude indicated that puts us at roughly the 75th ranked fundraising team. I am personally setting our updated goal at $20,000 which should get us well into the top 50 and would be a HUGE accomplishment in our first year.
Please click on this link and consider making a donation to Team Natalie as we support the efforts of the wonderful medical professionals at St. Jude in trying to find cures and better treatment for children like Natalie.
From here you can pick which of the many Team Natalie members participating in the St. Jude Marathon that you want to support. Without St. Jude our journey would have been over at diagnosis and we never would have had the hope that carried us through our 8+ month journey with Natalie. 8 months isn't nearly long enough and it is only through supporting St. Jude and other great organizations that are dedicated to the cause of finding cures and saving children's lives that we can truly make a difference. Thank you for your consideration.
In addition to these specific fundraising efforts we are working on several other ways to help raise awareness & funding to make a difference in the battle against pediatric brain cancer. That may include forming our own foundation, lobbying congress, bringing together the many amazing & passionate contacts we already have. For now I want to share several videos that we think say so much about this battle. Please take a few minutes to watch each when you have the time.
Thank you, thank you, thank you for continuing to be a part of our journey. Please remember & honor Natalie by being a part of our fight to make a difference.
With much love and NO regrets!
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