Wednesday, April 11, 2012

April 10, 2012 (Part Two)

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.


My daddy insisted I start Part Two of my day yesterday with the above picture which features a hairy man like my daddy who is screaming into a microphone and talking about Vietnam.  I don't think my blog has reached Vietnam (yet), so why I'm saying good morning to their country I have no clue.  I would have thought saying Good Morning America would have been more appropriate considering 29,864 of my now 30,785 page viewers have come from the U.S.  That's a pretty amazing number considering less than 10 hours ago that figure was just under 20,000.  My mommy & daddy keep telling me to say the GMA reference is just a small hint being sent to someone named Robin Roberts & George Stephanopoulos - nice to see I'm not the only one with a hard last name).

My mommy & daddy also insisted I say thank you to everyone who has offered to help me complete my bucket list.  You are all an inspiration to me and my family and proof that there is still a lot of good in this world!

OK now for the rest of the fun stuff I got to do yesterday!

My mommy and I danced in the living room together to one of her favorite songs by Pat Green.  


Also my Aunt Kaitlin came over and threw me a tea party and celebrated my 5 month birthday with me and my mommy & daddy...

My daddy kept telling me I look like a Troll Doll in this picture, but I'll let you be the judge.


Oh and before my tea party & birthday celebration, my Aunt Crystal, Tia Adria, and 'Anake Jamie +1 bought me this cooooooooooool bubble machine!!!

Aunt Crystal & me blowing bubbles, while mommy, Tia Adria, and 'Anake Jamie +1 pose for the camera.
Are those bubbles coming from me?

Buuuuuuuuuuuuuuubbles!

Wait...what is this witchcraft "bubble machine"?


For the love of bubbles enough already!  Can't a sister just take a nap?
Ooooh and special thank you to my Aunt Marcy & my Uncle Jeff for coming to visit me!!!


  
Items I Can Scratch Off My Bucket List:
1. Celebrate my birthday.
2. Wrap my arms around mommy & dance with her.
3. Have a tea party
4. Blow bubbles with my mommy, daddy, and my aunties.
5. Dress like a troll doll wasn't on my list, but it made my mommy & daddy laugh, so I'm adding it.
6. Continue to make people smile & inspire others.

Up Next:
Mommy & daddy are taking me to where they met and on my first college tour.  I may get to layout at Sewell Park and play Frisbee with Frisbee Dan if he's there and we have enough time.  Until next time...



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.

42 comments:

  1. Oh wow I am crying I am sorry for this path you are on. What a beautiful heart and attitude you have. I have no Idea how hard this must be for you as a mommy. I recently gave birth to my sixth child stillborn, so I do know great pain and loss. I am saying a prayer for you and Avery.

    ReplyDelete
  2. Hi Avery!!

    I would love love love to be apart of your bucket list! I know that I would be more than happy to be one of your 1,000 hugs:)! I knew and SMA angel..you all are made of something special! Please let me know how I can be involved. You are an inspiration sweet girl:)!

    Claire

    ReplyDelete
  3. Love your dance moves Avery and your Tea Party and BDay Party looked like so much fun...You are a rock star sweetheart!! <3

    ReplyDelete
  4. Dear Avery --
    You have a letter from Cadence and Sierra. You can view it here: http://ourtwoblessings.blogspot.com/2012/04/dear-avery.html

    We hope to hear from you soon. Your story inspires us.

    ReplyDelete
  5. Avery,

    You are not alone, Never Give Up!
    I have shared your story with some of my friends and now I will share theirs with you in the hopes that you find strength and encouragement.

    http://thegsf.org/home/


    Lots of love to you and your family. :)

    ReplyDelete
  6. God chose your parents very carefully Miss Avery, what a wonderful family. I love that you are celebrating life each day. You are such an inspiration to others. I have some other fun stuff you could add to your bucket list! If you visit Chicago, you must go to the 103rd floor of the Sears Tower and sit on the glass ledge. Also fun kiddo stuff to do in your home town...play at a splash pad and go strawberry picking. And at home...plant a garden :) God Bless you little Avery! xoxo

    ReplyDelete
  7. Hi Avery! You sure are an inspiration! My husband and I live in NYC and would love to host you and your family if you want to visit The Big Apple!

    ReplyDelete
  8. Dear Miss Avery,
    What a joy to not only see your pics and read your blog, but to also view your special videos w/ mommy. I wrote to you the first day I came across your blog on FB and wanted to let you know that I am sharing your story with my friends. On my fb, I wrote "Wow... What an incredible reminder that every day we are given is a gift and to truly enjoy all that life offers, no matter your limitations..." along with your link; lot's of people "like" it :) A quick funny story for you; on Sunday, my husband asked me if I ever read blogs..? I told him "no, I'm not into that"... Well, less that 24 hrs later that all changed because of you and your story. I am now a regular blog reader. Thanks for inspiring me, making me smile, and touching my heart. I plan to thank you by continuing to share your blog, so you can do the same and educate and inspire even more people! I made some early suggestions for your bucket list and I thought of another one, wear a tiara! A friend once said, that no matter the age, every girl has a bit of a princess complex, wonder if you do...
    I continue to look forward to what life has in store for you. Tell mommy she is beautiful both inside and out and tell daddy he is pretty funny! "Breaking the law, Breaking the law" made me sing... :)

    Be Tough, Miss Avery!

    ReplyDelete
  9. love the videos .. truly makes us feel like a part of it! Keep it up Mike, Laura, and Avery! Love ya!

    ReplyDelete
  10. What a strong, amazing and inspiring little girl you are, Avery! I wish more people in this world (including myself) could embrace your outlook. This attitude will take you SO far, I can just feel it. I live in Chicago and noticed that there was a cubs game on your list :) I don't have tickets but if you and your daddy plan to come to Chicago I will do whatever I can to get you some.

    You are an inspiration to so many people. Life isn't counted by the breaths you take, but by the moments that take your breath away.

    Bless you darling :)

    ReplyDelete
  11. What a sweet girl - and she is so lucky to have you as parents. My blog is small, but I'll link to yours just in case someone who reads mine can help Avery cross something off her list.

    ReplyDelete
  12. Mike, Laura and Avery, you guys are amazing!

    Mark, Michelle and Ryan

    ReplyDelete
  13. Dear Baby Avery,

    What an amazing and beautiful gift from god you are. Your parents have been blessed with a baby angel. I will keep you and your family in my thoughts and prayers always.

    I thought of a few things that I think you would love...(by the way my name is Landon....but everyone calls me "Landon Bear")

    Everyone needs a Build A Bear - There is so many to choose from and you can put a heart inside it and everything.

    You really should try those cool crayola markers that write on the windows - (my mommy helps me with those)

    Watch Mickey Mouse Clubhouse - its a totally cool disney show. Everyone loves Mickey Mouse.

    Every girl needs tons of baby shoes. I have tons!!! (even though I am a boy) If there is a place to send them, I will get you some because I am a REALLY good shopper. All I need to know is where I can send them and how little those baby feet are? Mommy's email is emeraldeyez2445@yahoo.com - her name is Amy!

    The leapfrog alphabet wheel - its super cool and has been my favorite toy for a long time....and since I have my own challenges, this was my very first toy I was able to activate myself....with some help.

    Pet a Bernese Mountain Dog....thats my favorite kind of dog...or at least have mommy and daddy show you one on the internet...they are kind of wild.

    I will keep thinking of more stuff and we will try to help you as much as we can! Please let me know where we can send you a special gift?

    Baby Avery, you have filled my heart with so much happiness!!

    You are and your parents are inspirations to the world!


    Your friend,

    Landon Bear (3yrs - Pa)


    "My spelling is Wobbly. It's good spelling, but it Wobbles, and the letters get in the wrong places sometimes." -winnie the pooh

    ReplyDelete
  14. Most precious tea drinker EVER! Wow...she's just too cute!

    ReplyDelete
  15. I am encouraged by your great attitude and your desire to help others through your trial. Thank you so much for sharing and for being a blessing to those who read your story. I have a faith in Jesus Christ and that faith gives me hope for a future in heaven where the babies we've lost will be waiting with open arms and perfect, healthy bodies. I hope that you share that faith in our precious Savior, because His strength, power and hope is capable of getting us through absolutely anything this fallen world requires of us.
    I look forward to seeing Avery accomplish all the items on her bucket list and living her short life to the fullest. May God's blessing flood your family even during this tough time!

    ReplyDelete
  16. You should visit an animal shelter and spend some time with kittens or puppies. :)

    ReplyDelete
  17. Sweet Avery,
    I hope you get the chance to cover yourself in chocolate pudding/popsicle/batter. It's fun!

    I hope you get to meet Ellen and Oprah!

    ReplyDelete
  18. Hi there! I am a principal at an elementary school near Austin and I would love to talk to you about Avery staring in our second grade play in May. Email me at heatherarn@yahoo.com if I can help! It would be a wonderful experience for our students and school to help this wish come true!

    ReplyDelete
  19. You are such an inspiration. Thank you for letting the world in on your journey.

    ReplyDelete
  20. My 2 year old, Sydney and I suggest Santa...perhaps a xmas in June or July :) we had a friend that decorated their whole yard in the middle of the year and everything with those inflatable snow globes and we have a santa costume if you want to borrow it...we're friends of Melissa and Joey's and can bring it to them if you like :)

    Meredith McMillian

    ReplyDelete
  21. You family is in my prayers, your courage inspires me....this is a Facebook post from my step mom, they live on a farm,. but it's in California......

    I watched their precious videos. Such a beautiful family. Made me cry. I wish we could add "ride a horse" "pet a cow" and "milk a goat" to her bucket list. Thank you for sharing.

    ReplyDelete
  22. Did you make it to Sewell Park yet? Frisbee Dan is still there! My daughter is a student at Texas State and when we went to visit her over Spring Break we hung out at the park and watched FD for a while. I'd be glad to contact my daughter to make sure Avery gets to meet him. Also, my daughter is in a sorority and lives in the DZ house, so maybe Avery can be a sorority sister for a day! Contact me at kradenbaugh@hotmail.com

    ReplyDelete
  23. What an amazing outlook on life you have created for your daughter and yourselves as well! I am a photographer in the San Marcos/Austin area and would love to take family pictures for you guys. Herrin.kristin@gmail.com

    ReplyDelete
  24. I am in a sorority at Texas State and we would love to put on a sisterhood event for Avery. She will be an honorary sister for a day! Your family is so inspiring and I will be keeping you all in my prayers. Please contact me at dp1261@txstate.edu Dayna

    ReplyDelete
  25. I hope your visit here to Texas State tomorrow makes you all smile!!! I'm a studen and will be on campus all day tomorrow!

    ReplyDelete
  26. Your story and drive to make SMA known is amazing!
    I had a couple more items to add to the bucket list:
    Get a library card
    Plant a tree or flower
    Go to a farm
    Chalk the driveway - my boys love doing this.
    Ride a train/bus/airplane
    Make a cross country trip
    You are all in my prayers!

    ReplyDelete
  27. Mike, Laura, and Avery,

    This is Debbie, Audine's grandduaghter. What a beauty you are Avery! Good job Mike, that is what grandma would have said. What an awesome family you are. You are in our thoughts and prayers. Grandma is looking down and smiling on y'all. If we can do anything, please let us know! We love you all!

    Hugs and kisses!!!!!

    ReplyDelete
  28. My son is in Mrs. FB's class at horn and this is from a FB friend of mine.....


    If you get in touch with them and let them know if they don't have a photographer yet, I want to do it. I want to do family photos and her in her mom's wedding dress and playing dress up!!

    Please email me if you want to do this, she is an amazing photographer!

    gracette17@yahoo.com

    ReplyDelete
  29. Hello! I live in San Antonio and i am in AlamoCity Rollergirls it would be awesome if you could come to one of our games! We do have a game this Sunday the 15th i know it is short notice, we have a game every month. please Email me if this is something you would like to do, i will get you guys tickets!!! i will keep you and your family in my prayers!

    Hugs and hipchecks
    Mothra Stewart '09er'


    Rafaelascakes@yahoo.com

    ReplyDelete
  30. Ok, I missed the tea party video earlier. I got all choked up after "The Dance"...I mean, "It came upon me wave on wave". Anyway, that is really cruel to feed your baby plastic desserts...and airy tea! give that baby some sugar!! NO not really. so cute. She really loves to lick the cup clean though, doesn't she? Love it! A girl after my own heart :D

    ReplyDelete
  31. You forgot the Granddaddy of all bucket list items.... the BOSTON MARATHON!!! It's in one week, which isn't a lot of time. Check out teamhoyt.com. I'm not registered this year, or I'd volunteer to push, but let me know (I have a blog on here, too) and I'll work my tail off to get her in it. Otherwise, I've got NYC Marathon in the fall...

    ReplyDelete
  32. don't forget to bake cookies and tye dye a onesie! those are fun things to do :)

    ReplyDelete
  33. My 7 month old son, Asher, would love to take Avery on her first date. We live in Houston so I think this could be feasible. He wrote a letter formally inviting Avery. I've included it in this comment.

    "I usually don't do this kind of thing, but my aunt really thought we might hit it off. My mom likes to make lists like you do, and I love her, so I thought I might like you. Here's a little bit about myself... I just turned 7 months old. I have brown hair and blue eyes. I don't have any teeth yet but I'm currently working on that. I love dogs, yogurt, green beans and Mom's milk. If you accept, I can show you the world. Shining, shimmering, splendid. Really, I'm just a boy asking a girl to take a chance on me.

    Love, Asher"

    If interested, please contact me at brittni.austin@gmail.com

    ReplyDelete
  34. you are all so blessed as you know what "love is"

    ReplyDelete
  35. You guys are such an inspiration. Thanks for sharing your sweet story. I know this challenge has got to be extremely difficult. The character you and your family show by not letting this make you bitter and angry is remarkable. My thoughts and prayers are with you guys.. Good luck! :)

    ReplyDelete
  36. I am truely inspired by your living in the moment attitude I can't help but to cry. As a mother of two I cannot even imagine what you must be going through. Please know I will always keep your family in my prayers and thank you for letting use share your wonderful moments with your beautiful princess.

    ReplyDelete
    Replies
    1. Avery u are brave and beautiful, have amazing parents i could never imagine what u and ur family r goin through just have faith in jesus and anything is posible if it can bring u to it he can bring u through it

      Delete
  37. Avery your story touch my heart and you are so blessed to have some much love in your life.

    ReplyDelete
  38. My Cousin has spinal muscular atrophy... She is 14 yrs old and although life hasn't been easy for her or my Aunt and Uncle she is still LIVING LIFE to its fullest. Keep praying....

    Tiffany Howard
    San Bernardino, CA

    ReplyDelete
  39. See a Broadway musical. Preferably Lion King or Finding Nemo.

    ReplyDelete
  40. I was watching this tonight at work and had to stop in the middle of tea time. My heart, at that moment, was right there holding you in my lap with your mommy and I'm crying. I work with a bunch of guys and you know how they are - "why are you crying?" and "your make-up's running, knothead!" It's all in fun, though, because I work with a lot of great people here and once they heard your story, they understood my tears. Thank you, Avery, for making this moment in time so incredibly precious for me.

    ReplyDelete
  41. "Wave on wave". This song will resonate with me forever. What an intimate moment you shared with the world. Thank you for sharing your love for your little girl with us.

    ReplyDelete