Thursday, April 12, 2012

Happy B-Day, Memory Lane & My First College Campus Tour

Each time I post an update, please share my story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers.  And to all my girlfriends out there, tell your Ob/GYN about my story and maybe they'll routinely start offering SMA testing.  If we can help save a few of my future friends and their mommy, daddy, and loved ones from SMA, then my life, while cut short in time, will be beyond fulfilling in stature.


Yesterday was my 5 month birthday and to celebrate, my mommy & daddy took me on a road trip to where they first met and fell in love.  Oh and I was able to take my first college campus tour at mommy & daddy's Alma mater, Texas State University.  My daddy kept saying "back when I graduated, it was Southwest Texas State University.  In fact I was part of the last graduating class of Southwest Texas State University."  OK daddy, we get it, the name changed, you're getting old, let it go.  Thankfully he stopped short of embarrassing me by stopping any students and saying, "you know when I went here..."

Oh and so I don't forget, before I go any further about my day yesterday, I want to say thank you to everyone who is commenting on my blog, as well as reposting my story on Facebook, Twitter, and via e-Mail!  Also, a special thank you to the following writers/bloggers for helping me tell my story and spread awareness about SMA:

My Aunt Stefanie Robledo - http://thestefanie.com/averys-bucket-list/

My Aunt Amanda McCroy Jackson - http://jacksonjabber.com/

LynDee Walker (www.examiner.com) - http://www.examiner.com/elementary-years-parenting-in-richmond/avery-s-bucket-list-puts-spotlight-on-rare-genetic-disorder-amazing-family

With all of your help, my bucket list has received 69,958 page views since my first post less than 67 hours ago.  That's a little over 1,000 page views an hour.  My mommy & daddy have also already been contacted by local Houston news networks (FOX 26, NBC, and CBS), as well as multiple radio shows.  They all want to share my story and help me spread awareness so parents know about SMA, the medical & insurance industries include SMA carrier testing of parents prior to conception, or at the very least make it mandatory during newborn pre-screening tests.  And then hopefully by my next lifetime find a cure for SMA so babies like me can live to write on walls, throw tantrums in the mall, spill juice on the carpet, walk to school, tell mommy and daddy I love them, tell mommy and daddy under our breath "stop it, you're embarrassing me", and overall just do what all children were born to do...not worry about anything, because mommy & daddy have it all figured out so we can all just be kids.

This was my yesterday:

First, my mommy, daddy, Nana Sandi, and G-Pa all packed into my daddy's Tahoe and left New Braunfels, TX in route to San Marcos, TX on our way back home to Houston.  Daddy tells mommy he bought his Tahoe shortly after he found out I was on the way because, "we're going to need more room once Avery gets here." - but he confided in me that he really just wanted a new car and he used me as an excuse so mommy didn't ask for one too!  But don't feel bad for mommy, because she convinced daddy to buy a big enough house before I was even conceived so we could fit me and my 3 future brothers or sisters under one roof together.  Mommy-1; Daddy-0.

Ummm daddy, I don't think there's room for me back here.

Yes, hi G-Pa...now watch your head!


Once we arrived in San Marcos, the first thing we had to do was go to Colloquium because mommy & daddy forgot my Bobcat gear back in Houston.  So like any good parents, they took 2 seconds to debate which one forgot the outfit and then daddy bought me a new one...Mommy-2, Daddy-0.

Old school...daddy insisted we take this picture.
I joined the cheer team.  Beat ba ba ba beat go Bobcats!



Where My Mommy & Daddy Met & Fell In Love:
My mommy & daddy met back in the summer of 2003 when my daddy lived at Bishop's Square Apartments in San Marcos, TX and my mommy came in for a job interview.  Daddy knew the entire staff so when he saw mommy interviewing he apparently walked into her interview and interrupted the entire thing, apologizing to the manager conducting the interview of course.  According to mommy, he introduced himself, shook her right hand, and then grabbed her left hand (looking for a wedding ring) and he said, "Good.  It's nice to meet you, congratulations on your new job (because daddy told the manager she had no choice but to hire mommy) and I look forward to seeing you more often."

Then my daddy did what any man in love would have done.  He stalked mommy for the entire summer until she agreed to go out with him.

Daddy's version of the story: "Stalked?  I mean I wouldn't say stalked.  I had to pay rent once a month, the next day I had to make sure my rent was received, the following day I had to make sure it processed accurately, I wasn't sure of their pet policy and needed to get a good grasp on all the wording in the contract, and even though the apartments were only 1 year old at the time, I'll be darned if something didn't breakdown in my apartment everyday mommy worked that summer.  Lots of service requests for apartment 1008 that year and I sincerely hope they've been resolved since your daddy moved out."

Mommy's version of the story: "Your daddy stalked me."

For those of you counting with me, that's Mommy-3; Daddy-0.  Daddy's got a lot of catching up to do, but I've been told by mommy it will never happen.

I had to end my trip in San Marcos because I started to develop a small fever and had a few breathing difficulties, but before I did my Aunt Ashley came to see me (pictured above).  Hopefully I can go back and meet Frisbee Dan, hang out at the river, eat at Grins, go to this Italian Garden place my G-Pa keeps going on and on about, and be an honorary sorority sister for a day (thank you to the individuals who offered that...I didn't see it until I got home last night).

On our way home, my daddy wanted to stop by his district office and say hi to my Grandma Lori, Grandpa Ricky, Aunt Sherri, and Aunt Amber.  Just a quick pit stop to capture a few more smiles on my way to 1,000+.  Little did I know, when I got home there was a package at my door with a note that read "HAPPY 5 MONTH BIRTHDAY AVERY!!!!  WE LOVE YOU!!!  GRANDPA RICK & GRANDMA LORI."



















Items I Can Scratch Off My Bucket List:
1. Reach my 5-month birthday.
2. Go on a road trip.
3. Take a college campus tour (Texas State University in San Marcos)
4. Be a cheerleader
5. See where mommy & daddy met and learn how they fell in love.
6. Get a present in the mail.

Up Next:
Whatever I bring to life, because I don't have time to sit back and wait for life to bring anything to me.



Don't forget to share my story by following & forwarding my blog, following me on Twitter  (AveryBucketList) and Like Me on Facebook (Averys Bucket List)!  While it may or may not help me in my lifetime, the more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will one day be a cure for children who already have SMA!



If there's anything you'd like to mail me, you can send it to:

Avery's Bucket List
PO BOX #2849
Bellaire, TX 77402


Also, my mommy & daddy wanted me to make sure you know that all monetary contributions will be used towards continued SMA awareness and the further advancement of research to find a cure for SMA.  If you feel more comfortable making monetary donations directly to a registered non-profit organization, mommy & daddy strongly encourage you to please do so in my name to the following organization:

Fight SMA (www.fightsma.org)

If you donate directly to Fight SMA please let me know so I can keep track of reaching my bucket list goal of raising at least $1,000,000 towards a cure for SMA.

55 comments:

  1. Well you certiantly had a nice day and I'm glad you saw where your mommy and daddy met and fell in love. I will be sharing your blog with many others and hope you get lots of followers.

    You are such a cutie pie

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  2. Avery has the BEST parents ever! Y'all are such an inspiration with all the strength you have.

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  3. got to this link through a friend. sounds like a great trip to see the texas state (aka SWT) campus. happy 5 month birthday! i'll be sharing this link with others.

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  4. I received an email about Avery from "grandpa Rick" this morning and have thinking about this sweet little doll ever since. I am passing this link on and adding you all to my prayer list. Avery, you are absolutely adorable!!!

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  5. happy 5 month birthday avery! here's a blogpost for you: http://clairet93.blogspot.com/2012/04/averys-bucket-list.html

    keep on going sweet girl! you are awesome

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  6. This is such an inspirational approach to Avery's illness. She is lucky to have such a loving family to support her and make lasting memories with.

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  7. Happy Birthday Avery! You are just like your mom and dad. You get alot done in life for being so young. I love this blog. I am getting to know you and your family as if I was right there with you. Keep up the good work girl.

    Kelly Baca

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  8. Happy Birthday, sweet Avery!! You are just BEAUTIFUL!! I stumbled upon your wonderful blog from FB. Tell your mommy & daddy about Scarlett who also has SMA over at: scarlettshope.blogspot.com :)

    xoxo Tiffany

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  9. Happy birthday Avery Your are a lovely little cheerleader! I am cheering for you, More importantly I am Praying.

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  10. Seriously cant stop thinking about little Avery. Heard about the story 2 days ago...and read the blog daily. You're family is so strong.

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  11. Happy Birthday Avery! Your aunt Megan is one of my best friends & has been absolutely crazy about you since the day you were born so I have seen lots of pictures of your beautiful face. I love reading your blog everyday. With the help of your parents you are accomplishing more in this week then some people do in a lifetime! You have amazingly strong parents and SO many people praying for you.

    So much love,

    Alex McWhorter
    Oklahoma

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  12. Sweet Avery,
    I found out a way to cross off a few of your bucket list items:
    Panama City, FL
    http://www.waterplanetusa.com/programneeds-options.php
    Here you can swim with Dolphins with your mommy and daddy! Mommy and Daddy will have to call to schedule an interaction/therapy session 866-449-5591.
    I searched all over and called lots of Dolphin Interaction Programs and this may just be the closest to the Texas area!
    You can also visit the beach, lounge by a hotel pool and read magazines, maybe even fly on a plane? I'm sure you can cross alot of your list here!
    Lots of Love,
    Miranda

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  13. Bring sweet little Avery to Seabrook! We have a private little beach so she can play in the sand, and fish! Every little girl needs to fish with her daddy!!! We would be honored to have you all!!!!

    Ashlee Kahn

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  14. I think you can scratch off "loved by thousands" (and soon to be millions) from your bucket list... because you have certainly captured my heart and the hearts of many. I will share your story as best I can, sweet little girl!

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  15. Avery

    We are praying for you baby!!!

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  16. Your such a sweet girl your story touched my heart much love to you god bless you you pretty baby! You have wonderful parent!

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  17. Absolutely amazing!! Your daily activities and updates are becoming something I look forward to everyday. You have a very special mommy and daddy and it's very apparent the amount of love that surrounds you.

    ~ Rebekah

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  18. Happy 5 month birthday Avery!! What a lucky girl to get to spend it in one of the best places in the world! :)

    Thank you for keeping us updated on all of your ventures, you really have the best parents that I could imagine for anyone! What an inspirational family! You are constantly in our thoughts and prayers.

    Carolyn Blass

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  19. Avery, you are so beautiful and your eyes shine with love. We are going to try to help spread your story and we are going to talk to our friend at ABC. We have not met you yet and can't wait to do so, but nonetheless, we are so in love with you. You are so fortunate to have such an awesome Mommy and Daddy who love you so much, but most of all they are so fortunate to have an angel named Avery in their lives. You have and will continue to affect so many peoples lives in a special way and your soul will bless this life and beyond. Love Haven Felch's Daddy and Mommy

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  20. Hi Avery, you are such a lucky girl to have such a great mommy and daddy. your story is heart warming and heart breaking, but Im glad your family can focus on the good your life can bring to the world, rather than the saddness of your too short time here.

    I saw your bucket list includes being a flower girl in a wedding. Im getting married in June and I dont have a flower girl. Id be honored to have you be my flower girl if you could make it the long way from texas to new york state. You also have seeing niagra falls on your list. That is just a two hour drive from the wedding...a two in one! Just want you to know complete strangers are inspired by your story and would love to help.

    keep smiling sweet girl, you are beautiful.

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  21. I look forward to reading your blog every night! I do nothing but think about you and your family all day long and wonder what your day was filled with. Thank you so much for letting us endure this journey with you and letting us be a part of your family. Sweet dreams baby Avery and family, can't wait to hear from you tomorrow!!!

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  22. I tried to find your email here, and I didn't spot it. I have something that I want to do for you. Can you please email me? katiedid1212@gmail.com

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  23. Hi Avery! I have been following your blog since I heard about you this past week! I was told about you and your amazing family from a coworker at Lovett Elementary where I am a teacher. I too have a 5 month old daughter. I know your family has an overwhelming love for you and spend each minute kissing, hugging, and cherishing every second they have with you. Your story has had such huge impact on my life, especially being a new mother like your mommy. You are such an amazing little girl and I would love to give you smiles, hugs, and kisses and let you make a new friend with my little 5 month old Emma. I will continue to watch you grow and go on many more adventures! We all love you! Allison

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  24. Oh, sweet Avery, you are such a lovely baby girl. You don’t need to thank me — I wish there was more I could do to help you and your parents, but am very glad to have been able to share your story in my parenting column yesterday.

    I spent the day today out shopping with my little Avery, and I thought of you and your mommy all day. I’m so glad that my article might have made a small difference in helping you with your mission of “going viral” and sincerely hope that people continue to read about you and come and subscribe to your blog. I think you and your mommy and daddy are amazing and courageous, and have a story that should be told. Bless you all.

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  25. Avery,
    Happy 5 month birthday! I work at Complete Women's Care Center where your mommy first saw your pretty little face! So we have known eachother a really long time. I wanted you to know that your story has impacted my family so much! We are praying for you and your mommy and daddy! We will continue to spread the word about you and SMA. I would like to be a part of giving you 1000 hugs and kisses.

    Love,
    Angelica

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  26. I would love to help with your bucket list - I live in Houston and my little girl will be having a birthday party. We would be honored if you could attend! Email me themunns at gmail.com

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  27. I love your 5 month birthday pictures and your big, bright, beautiful eyes. I especially like the smiles on Mommy and Daddy's face because they have you. Each time I think of you I send my love and energy across the Gulf to your hearts.

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  28. Baby Avery, I read about your blog through Facebook. I have a 9 month old baby boy and I can't imagine what your parents and family are going through. You are obviously loved beyond words and I wish you many happy days filled with lots of loves and kisses. Your parents are in inspiration.

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  29. Baby Avery- What a little soldier your are! Sometimes I think children are stronger than adults. When adults get hit with bad news, many wallow in self-doubt and depression. But, when young children have terrible things happen to them, they smile and continue to live and love life with everything they've got in them. Your and your parents' strength amazes me to my core and you all are an inspiration to the world. Baby Avery, you are loved not just from the people who have met you, but also by the people you haven't. I will follow your blog every day and look through your bucket list to see if there is anything at all that I can do to help you on your endeavors. Give your Mommy and Daddy, hugs and kisses and more hugs and kisses for me. They are stronger than words can tell. <3 Health and happiness to you all.

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  30. Hi there, Avery! I read about your story on facebook. You are such an inspiring little girl. I hope you get to accomplish everything you dream of! I would love to help you accomplish one of your photo shoots on your list. I am a photographer here in Houston. Email me at kimberly@kimberlybenyakphotography.com if you are interested!

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  31. Hi sweet Avery. I am a good friend of your aunt kristy. I also met you several times when u were in your mommy's tummy. I remember talking to your mommy about you.... She loved you SO much, even before you were born and couldn't wait to meet you. Now you are here and the world is a better world because of you. Gracie and I have been hoping to see you in Starbucks, but we haven't yet. I don't know if "have a play date" is on your bucket list, but Gracie would love to have a play date with you! We love you and your family, Kathy and grace

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  32. Avery, How blessed your parents are to have you in their lives. I hope you ride a merry go round, and have an aquarium full of colorful fish - makes a great night light and humidifier too!

    Bennett's mom, Laura, shared your story with me. She taught at the same school as your mother. Another bucket wish - that Ms. Laura would be your 5th grade teacher!

    Note to Avery's Mom: I hang out with Bennett a couple of times a month so that Laura can catch up on life. You are so lucky to have a great support system , for yourself, as well as your daughter. But if you ever need an extra hand, I'm a phone call away, gratis.

    Shared your story with Germany, Cambodia, Mexico, the Philipines and Alaska tonight...can't wait to see how you will rock Friday the 13th!

    Sue Matthews

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  33. I am in looooovee with Avery's bucket list. My heart is overflowing with so much sadness, yet so much joy. Thank you for sharing your story. And just want to let you know my heart goes out to you. Sharing on my fb page most definitely in the morning. I live in Houston, and look forward to the news stations airing about sweet Avery! She is already making such an impact in this world!!

    xoxo fran

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  34. What a precious little girl. You can cross off your list having your blog read in Southeast Asia! What an inspiring way to deal with one of the worst possible circumstances in a parent's life. Praying for you from across the world!

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  35. happy (late) 5 month birthday you beautiful girl:) praying for you, your mom and dad.

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  36. Praying...don't know you but I know the love your parents feel for you. I know their hearts...so that way I do know you...You are their angel and they are yours. Thank you for touching countless hearts. The world will be a better place because you are in it.

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  37. Hello, I wasn't sure if it was possible to contact you directly, so hopefully, this is the right way:) My family and I are so touched by your story. We live in NYC and would like to speak with you about getting you here to cross that off of your bucket list. It would require a bit of fund raising, but I don't think that would be hard at all. There is so much to do here and so many items you could experience and cross off, like riding on the Ferris wheel at the Toys R Us in times square! Riding on a Carriage horse with someone you love! Seeing the Statue of Liberty and watching a Broadway show!
    I can be reached at lchristian@muzosa.com it would be such an honor to help make this happen for you.

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  38. What a sweet blessing you are little one to all of us! Thank You for sharing your bucket list with us! Happy Birthday!

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  39. I went to "SWT" in 99 and graduated from "Texas State" in 2004! Looks like y'all had a fun time in San Marcos. I love reading about Avery's adventures! :)

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  40. As a fellow bobcat and rare disease fighter, I wanted to wish you the best of luck making every dream you wish a reality! Sugar1337@aol.com

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  41. To Avery's parents..Today I saw Averys story on ch.11..I've been crying since..I can't explain how powerful her story is. I just wanted to hold her and give her a kiss and tell her everything was going to be okay. I know that God sent this beautiful baby girl to wonderful, caring individuals.I have two children. As a parent it's so hard to imagine that Avery is going through so much,having her bad days and not being able to express her pain or thoughts and you vice versa with her not understanding why this is happening.I am so sad that your family is going through something so hard. I pray that you stay strong till the end of her life's journey.She is a true blessing,and THANK YOU for sharing your beautiful blessing with all of us. I commit to Avery to let people know of her illness and her wonderful bucket list. Though I didn't meet her in person please let her know she is loved by one more person. I will carry her in my heart..always...Haydee G.

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  42. I'm a fellow Bobcat (and I have a daughter named Avery-perfect name!!) and you got me with this post :). Praying for you guys--thanks for bringing such awareness to this disease. Way to go, Avery!! There is a little girl in my community with this same condition. Praying for a cure!

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  43. You are Truly Amazing little girl! I know how much love and courage your Mommy and Daddy have!! I am telling your stoy to everyone that will listen, I pray for you and your family! Keep strong Canahuati Family, There is much love and support for you and awe of how incredible you are!

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  44. Hi Avery! I just want to say that you are such a beautiful girl! No wonder you got your first kiss already. :) I have a little girl that is about the same as you and I'm sure you guys would be great friends. That is why your story has touched me so much. I work at a television station in Monroe, LA and I have shared the story with the newsroom. Hopefully they will air the story that was on KHOU on one of the shows tonight or tomorrow morning. I also shared your story on my facebook and our morning show news page!

    Your Mommy and Daddy are such great people!! I've been thinking about you and praying as well!

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  45. My heart has been touched by this story! I am praying for a miracle! Praying for a cure! Ashley Haslund in WI

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  46. Hi Avery. My name is Aidan and I just turned 6 months old yesterday and my Mommy showed me your picture and I told her that you were the most beautiful girl I've ever seen!! If you haven't scratched off first boyfriend on your list I'd like to be it! It will have to be online because I live in Washington State but long distance relationships do work, it worked for my mommy and daddy!! I told my mommy that I really do love you and always will and I hope we can meet one day! <3

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  47. As a Mom of two girls, one just a month older than Avery, I can't describe how this story has affected me. Thank you so much for bringing this disease to my awareness. After drying my tears (and there were many), I realized that I was backwards. Rather than lamenting the injustice and heart-break of having your precious baby born with this disease, I realized how truly lucky a baby with this horrible disease is to be born to you. Thank you for sharing your inspirational journey and although I've never met your precious Avery, I will never forget her.

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  48. Shared your blog Avery! Your such a beautiful little girl with very loving parents. Thanks for touching my heart sweet girl!

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  49. Hi avery, An item for your bucket list; be in a beauty pageant you could for sure win!

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  50. Dear Avery. First of all, I loooove the super cute tutu you wore when you went in for your glam tube with Dr. Rude. (I don't know your awesome mama, but I would have loved to have been there to see her take on that doctor! Sounds like Dr. Rude didn't know who he was messin' with!) I know you have lots of stuff on your bucket list, and they all sound great. When I shared your story on Facebook tonight (looks like you have TONS of friends already, little lady!) I saId this: "This little girl is so loved. Pretty sure that is at the TOP of everyone's bucket list." God bless you Avery. I can tell how much He blessed your mama and daddy when he sent you to them.

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  51. Fell upon the blog off of cnn.com and started reading . Was especially tickled when I read you went to SW Texas State. We live in NC now but my husband worked at Texas State for 2 years (2007-2009)before we moved here. Praying for her, this was such a neat idea(the bucket list).

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  52. Just heard your family's story on the news..sweet baby girl and we Bobcats in San Marvelous are thinking about you <3 Thank you for sharing your journey.

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  53. Cruise town in a convertible with the top down.

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  54. I keep coming back every day and watching the tea party video and looking at all the sweet pictures. I must do this at least 5+ times a day. Sweet Baby Girl Avery just touched my heart so and I am consumed with her. I can't stand to think about what her mom and dad are going through and my heart truly aches for them. I had a baby nephew born with SMA and he lived for about a month. So, I knew what the outcome would be, but I still had hope that she would receive a miracle and that her story would have a completely different ending. I will continue to pray for this family, for forever I guess. How could you ever forget something like this, I pray for them all through the day- each time I think about this sweet baby. I thank the Lord that he gave her the loving parents that he did, and that she was LOVED. I will continue to donate each month for Avery, because this sweet baby touched my heart in a way I can't describe and she will live in my heart.

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