Friday, April 13, 2012

My First Kiss and...Who Cares About Other Stuff, A Boy Kissed Me!

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.

Since my first post 3 days ago, I've had 105,051 page views, which is amazing and I appreciate everyone forwarding my story to help inform and educate people about SMA.  With that said, right now that's not even the most important 3-letter acronym I want to talk about, because O-M-G, a B-O-Y totally kissed me yesterday and he is soooooooo cute.  His name is Cooper and he's 19 months old (I just love older men, they're so much more mature than 3 & 4 month olds).  My mommy and daddy said this might be the best kiss since Ryan Gosling & Rachel McAdams in The Notebook.  Then mommy said, "honey add kiss from Ryan Gosling to your bucket list...and don't forget to include mommy."  Daddy just kept saying, "Rachel McAdams, yes please"...whatever that means.  Anyway, back to Cooper, my little McDreamy, here he is in all his glory...
It was everything I imagined it would be.

Ugh, I just love a man who knows to close his eyes.

Cooper, like me, has SMA, but he has a different type than mine.  Regardless of what Type SMA he is, he's my type of guy.  He lights up an entire room when he enters it and I could tell daddy liked him because they sat around and talked baseball almost the entire time.  I am however a little worried about mommy & Cooper though because I think he may have liked her a little too much...


Excuse me mister, remember me, I'm down heeeeeeeere.
Cooper is quite the romantic, because he not only gave me my first kiss, but he also gave me my first gift from a boy, a new special "car seat" for children with SMA.  You see the car seat mommy & daddy had for me won't work anymore because my muscles are too weak to hold me up properly and it causes major issues with my breathing.  I really don't know why they call this thing a car seat because by definition I think the word seat means something you can sit on and in this bobsled/luge thingy I have to lay down.  Don't get me wrong, I love naps and staring at a cloth ceiling from time to time, but I'd rather be gazing outside at people walking their dogs, pretty landscaping, tall buildings, or just spilling my juice on daddy's car interior while banging on the window saying hi to the world as it passes me by.

Thanks Uncle Joey!  And sorry if my daddy annoyed you when he kept saying "Feel the rhythm, feel the rhyme, get on up it's bobsled time!  COOL RUNNINGS!"  Whatever that means.



That's Mrs. Jane (left) and Mrs. Nancy (right).  That's me on the floor with my Tutu in the air.


Physical Therapy?  More like Aromatherapy because this is easy. 
Bouncey ball...weeeeeeeeeeeeeeeeeeee!
OK, either I spoke to soon or Kim Kardashian just took Kris Humphries back. 


Daddy says if I ever come home with these,
it better be because I just left Physical Therapy.

Once physical therapy ended, I went home and relaxed for a little while before Roy, the massage therapist arrived.  You see, my Aunt Bo was kind enough to get me, my Nana Sandi, my mommy, and my daddy all massages.  Aunt Bo is currently dating my Uncle Kurt and he needs to go ahead and put a ring on it because I'm not getting any younger and I would make for an adorable flower girl in their wedding.

A little higher, maybe to the left a little, no back to the right...ahhhh yes, thank you Roy!
Items I Can Scratch Off My Bucket List:
1. My First Kiss - ahhhh Cooper my McDreamy
2. Meet someone else with SMA

3. Create a Twitter Account (AveryBucketList)
4. Create a Facebook Fan Page (Averys Bucket List)
5. Get a massage
6. Wear mardi gras beads
7. Inspire someone new

8. Have a first crush
9. Go over 100,000 page views (105,051)


Items I Can ADD To My Bucket List:
1. Kiss from Ryan Gosling for me & mommy.
2. A Rachel McAdams w/fries and a large water for daddy.

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.

48 comments:

  1. Hello Avery! My name is Kaitlin and I am 18 years old. I have a daughter as well named Lily Fae and she is 16 months old. She is the best and most difficult obstacle I have, and probably will, encounter in my life. Through going to college and working full-time I feel like i do not truly appreciate the blessings I have in my life. But, you have opened my eyes in many ways. You have such a beatufil family and they are so strong. I follow you everyday which brings me to tears but also much more smiles. I am currently attending Tarleton State and I have decided to share your story in a speech that I am to give on Monday. It is over spreading the word on SMA and more importantly sharing your story! If you would like me to put any specific info in I would be more than happy too. Words cannot describe how much you have done for me Avery, and I will be following you everyday!

    ReplyDelete
  2. I saw your blog through a friend's facebook page. As a first time mom of a 7 month old son this is about the saddest thing I have ever read. I am so sorry for you all and am glad to see you are making the most of the situation. I glanced around the site but didn't see anything - is there a foundation where we can donate to ensure this disease is getting funding for research? If so, please put a link to it on your site as I would love to donate so we can work to find treatment or a cure for this illness. Good luck to you all and God bless Avery and your family.

    ReplyDelete
  3. HI Avery! I have been following your story this week and it has touched me in more ways than one. Here lately I have been focusing on the bad and asking why things are happening to me and none of my problems compare to what you and your family are going through. Following your story it has helped me to open up my heart and count my many blessings and not focus on the bad but to see the good that is still left in this world. I have a 15 month old son Thomas he means everything to me and I thank God for him everyday. Some days he tests my patience but then I think of you and I give him a big ole' hug and tell him I love him. You can add and check one thing off your bucket list which is to help bring out the good in someone and from reading the comments posted on your blog you have checked this off your list many times over. I truly admire you and your families courage and strength, this world would be a much better place if there were more individuals like all of you to share it with.
    Other things you might want to add to your bucket list are:
    1.Fly a kite
    2.Make a wish on a falling star
    3.I highly recommend a trip to Colorado it's absolutely beautiful, get Mommy and Daddy to take you to Pikes Peak and throw snowballs at each other and feed the chipmunks

    I posted your story on facebook to help spread the word about SMA. Good luck with your bucket list beautiful Avery, I will be checking up on you!

    ReplyDelete
  4. Avery you dont me but your mommy is a teacher at my sons school and he doesnt have her as a teacher.. but has a really big crush on her!
    I just want you to know I saw this on fb and first want to say that you are such a beautiful baby girl with the best smile I think I have ever seen! You are so brave and I hope we all can be as brave as you. Stay strong, miracles happy and Im prayiong for one everyday for you! I hope I can meet you one day!

    ReplyDelete
  5. Hi my name is melissa , i loved reading your blog, i have a friend who had 2 babies die from this. Brittany lived for 4 months and hannah lived 9 months. they were told 1 in 4 chance their future children would get it, but amazingly after Hannah they went on had 3 healthy children who are in their teens . i will be praying for Avery as at 16 i had my first experience of a child dying from this. God Bless you all !!

    ReplyDelete
  6. YESSSS RYAN GOSLING!!! MMMM .... Sooo many women will be jealous of you Miss Avery ;)

    ReplyDelete
  7. Hello,
    My name is Francisca Ortega and I write for the Houston's Chronicle's parenting site. What would be a good way to contact you? Please let me know. Thanks,
    francisca@momhouston.com

    ReplyDelete
  8. This comment has been removed by the author.

    ReplyDelete
  9. I wanted to let you know I find you, your husband, your family and little Avery very inspirational! I love your blog, and while I have tears in my eyes reading it, I also laugh. Your daughter is so lucky to have parents like you. I will do my best to get the word out for Avery.

    A few things I think Avery might enjoy (I have a 5 month old as well):
    Make a Bear at Build a Bear and be a princess for the day (every girl needs a tiara – well every girl is already a princess per my beliefs, but a tiara is much needed)

    Kate

    ReplyDelete
  10. Congratulations on your first kiss from a boy !

    Maybe you can add "Go to the Zoo" to your bucket list, I'm sure you'd love seeing all the animals.

    ReplyDelete
  11. One of the best blogs I've read in a long time! It's so fun and energetic, especially considering the circumstances. But how inspirational you are! My four year old son lives life with a disability, so we're no strangers to heartache. However, I only hope that our family exudes an inkling of the grace and joy you share on this blog. God bless each of you in this bittersweet journey.

    ReplyDelete
  12. Greetings! I found your blog through a link on FB as well -- and I blogged about your blog, too, to hopefully help spread the link love! Avery is just precious and I both laughed and wept as I read through the blog. Y'all are definitely in my thoughts and prayers. :)

    ReplyDelete
  13. It is so nice to meet you Avery. I will be stopping by for lots of visits. What fun getting your first kiss from such a cute boy! xo

    ReplyDelete
  14. Do you guys have an email set up to contact you? Or a donation site, to help fund activities? I've shared your heartwrenching story on 3 of my facebook pages, and have one activity that is a go if we can get you to San Diego, which I'm also working on! I think if you could get to SD, you could cross a few things off of your bucket list! :)

    ReplyDelete
  15. A bunch of my friends had your blog on their FB pages. I love how strong you both are and how dedicated you are to helping her experience as much as she possibly can. She is beautiful! Thanks for sharing your story with the world. :)

    ReplyDelete
  16. Hi Avery. I have a little girl too. She is 6 years old and guess what her name is?? It's Avery Lynn!!! You guys have the same beautiful name. Your mamas must have good taste! I've enjoyed reading about your bucket list and I have a good one for you. It's one of MY Avery's favorite things. build a fort in your living room with sheets and fill it with every pillow you can find. Then you can have your own special place to hang out or just take a nap. I'll be coming back to check on you. Take care.

    ReplyDelete
  17. Take care,sweet Avery! I'll be sharing your story.

    ReplyDelete
  18. Hello Avery! I am a pediatric respiratory therapist in Cincinnati, OH. I take care of many children just like YOU!!! Many children with SMA Type 1 that I care for are around 4-9 years old - yes, NINE years old, without a breathing machine!! They just wear a small mask on their nose to keep their lungs open (called bipap). SMA children are some of the sweetest that I have ever met, hence why they're my favorite patients. They've taught me a lot about life - and I can tell that you're doing the same to your family and thousands of online viewers. There NEEDS to be a cure for SMA. Keep up the strong work, Avery! You're changing a lot of lives too!!

    ReplyDelete
  19. Love the lemonade your family is making out of the lemons they have been dealt. Thanks for reminding everyone who stops by to cherish every moment in life you are given. Found your blog through numerous facebook posts of friends. Perhaps we will get to meet you at PTC sometime in the future. We are there 2x per week - such a wonderful place! Look forward to seeing how many bucket list items get crossed off your list this weekend!!

    ReplyDelete
  20. http://www.caringbridge.org/visit/stellaturnbullturnbull You may wish to visit Stella's Caring Bridge site. Stella is 5 years old and she and her family have been dealing with SMA. I also gave Stella's mommy your blog address. Perhaps she can be a resource and encouragement for you. I prayed for Avery and you all today.
    Blessings to you, Beth

    ReplyDelete
  21. Hi Avery! My name is Farah and I am 7 months old. My mom is typing this for me, so please forgive any typos! I just wanted to tell you a few things. First, you are SO cute. Second, I am SO jealous you got to kiss a boy! I have only kissed my dad and my uncles...that totally doesn't even count.

    I am half American and half Indonesian. My mom and I are reading your blog from Jakarta, Indonesia. I have never been to Vietnam and I am not sure if your blog has reached it, but it has definitely reached Indonesia. I think there are a lot of Texans here! Anyway, Indonesia is almost halfway around the world from you! My mom and dad are making me move to CHicago in a couple months, but anyway...

    I'm really impressed with your physical therapy! It looks like fun! My dad makes me have a massage every week too, but I don't like it so much.


    Well, Avery, I guess that's all. My mom and I will keep following your story and if you are ever in Chicago, I hope we will meet.

    xoxox,

    Farah

    ReplyDelete
  22. Hi Little Avery!!! Wondering if your mom and dad have a way for us readers to donate so you can accomplish your bucket list. You are such a strong little girl! I'm glad you got your first kiss with an older boy! How fun!

    ReplyDelete
  23. Hello there beautiful little Avery! I just found you by a friend of yours Leah Cafiero. I am truly amazed by your story. You have spunk, girl! I would love to help cross an item off of your bucket list. Ride a horse. I own my own horse and have an amazing network of friends that also have horses. I am currently a Montogomery County Pct. 3 constable, Mounted Posse. I am working tonight out at the Montgomery County Fair Grounds for the Montgomery County Fair. I would love for you to come see me and let me give you that ride. You could also see and pet a bunch a farm animals, ride the ferris wheel and many other carnival rides! If you can't make it tonight, let me know and I'll be more than happy to meet you with my boy Pocket any time, any where and give you that ride. Reach me at liljontx@gmail.com. I am always connected to me email so I will get it any time of day.

    ReplyDelete
  24. Oh sweet Avery! I stumbled across your blog and I am so glad that I did! You are amazing! On February 16th I gave birth to my daughter...Avery Morgan. She is the most incredible gift I've ever been blessed with. I wish we lived closer so we ccould give you a big squeeze and help you cross something off your bucket list. We will be praying for you everyday and will share your story as often as possible. You have made me want to be a better mother and person. Life is too short. Here is a long distance hug and butterfly kisses from my Avery to you. Love, Kate and Avery in Yarmouth Maine

    ReplyDelete
  25. You're reaching a lot of people here in Maine apparently! I'm not too far away from Kate and Avery in Yarmouth!

    Anyway, you should add trip to Maine to your bucket list. Or since your daddy apparently likes Cool Runnings, you should add bobsledding to your list! I had the opportunity to go for a bobsled ride in college, and it was AMAZING. I'm sure your daddy would go with you!

    ReplyDelete
  26. If there were a list of reasons to put a ring on it, having Avery for the flower girl is at the top!!! :)

    ReplyDelete
  27. Mom and Dad, you inspire me! And Avery is so adorable. I want you to know I'm naming my little girl Avery, I can already see how strong she is, such a brave little girl.
    -expecting mom

    ReplyDelete
  28. Sweet, sweet baby Avery. How much joy you are bringing, compassion too. I look forwrd to hearing of more of your adventures with mommy and daddy. Thanks for sharing the bliss of your sweet life. I have a son, now grown. YOur story makes me love him more and his 2 sweet children. Thanks Avery. Eileen

    ReplyDelete
  29. Reading this made me think of my childhood and what I did that was so fun so I wanted to add to your bucket list. Be dressed as a princess in Disney land and go to disney land! beach, go out in the rain and put your feet in the wet grass, tea party! every girl must have one! wear a beautiful dress for no particular reason, ride a bike, go to the movies, go on a date, put on makeup. will write back if I think of more!!! I have 3 children, one of which is a little girl like you! Her name is Isabella and she is 3-1/2 yrs old. She loves dressing up and putting on makeup and of course tea parties!! At 32 I havent even accomplished the most important thing in life as you have! You are putting others first and making a life effort to help others and that is the best accomplishment a life can have. I am proud of you and your parents and wish you all the best and hope God walks along side you and keeps you strong and following this list! have fun!! Let me know when you have that tea party!!

    ReplyDelete
  30. Avery Lynn,
    How adorable you are. I had a Christina Lynn who died in a car accident at 21 while a student at San Diego State in 1991. We have a surviving daughter, Christina's younger sister, Michelle Lynn who is 37 now. Life is about the quality not quantity. We know that more then most. So keep on having fun doing all these nice and fun things with your Mommy and Daddy and family and friends. It will bring them joy and wonderful memories.

    ReplyDelete
  31. Baby Avery you have touched my heart! I pray God continues to grant you and your family strength and peace that passes all understanding. I have to admit I'm a little jealous because I didnt get my first kiss until I was 16 :-) Your story inspires me to be the best mom I can be and I will share your story with my family and friends to help more people become aware of SMA. God Bless you Sweet Baby!

    ReplyDelete
  32. Hi Avery! I am so glad you have such wonderful parents who are enjoying every minute of your life and helping you enjoy yours. I hope you get to try a swim in the ocean, stare at stars at night, go to a dance party....I bet you will. You are a beautiful young lady and an inspiration who has opened my eyes to the fact that we are all lucky to have one breath in this world....I am sending you lots of love, warmth and hugs girlfriend!
    xoxoxoxo

    ReplyDelete
    Replies
    1. Couldn't have said it better myself, thank you Gwen--hearts all around!
      Love, love, love,
      B

      Delete
  33. Hi Avery! I just started reading the blog after a friend of mine posted it on facebook. I just wanted to say what an amazing family you have and the amazing story of life that is unfolding for everybody involved. I love the whole bucket list idea, and as an aunt that has recently lost two nieces to a genetic disease (Holoprosencephaly) at the ages of 18 and 14 months, I really feel as if this is what everyone is supposed to do in this world....live life to the fullest. You are such a beautiful girl and the love that your family shows is simply remarkable....thank you for sharing your story and bringing awareness to SMA and genetic disorders in general.

    ReplyDelete
  34. Beautiful, brave little girl! Mommy & daddy love you so much and they should be commended for trying to help others even though their plate is full. You are wonderful, mommy and Avery is a lucky little sweetheart to have you doing everything possible to help save her life. Your family is in my prayers. God bless you, Sweet baby, girl!!! xoxo (from Savannah, GA)

    ReplyDelete
  35. I will keep you in my prayers

    ReplyDelete
  36. Monday, April 30, 2012 [ 1:41:00 AM ]

    Thank You for Your Order!
    Scientists around the world are receiving tremendous insight into the mysteries of SMA. This revelation is possible because you continue to stand with us and with them and with families everywhere. Our fight is not just for these brave children, but for all neurodegenerative disease. Because of the genetic mysteries that SMA research is revealing, disease efforts for Alzheimer's, Parkinson's, and ALS (Lou Gehrig’s Disease) will be advanced. The fight to defeat SMA, a childhood crippler and killer, encompasses our world. Your generous gift will help us to continue to leverage larger dollars from other sources such as the National Institutes of Health. On Capitol Hill, we are building support daily for the SMA Treatment Acceleration Act. When it is passed, this bill will dramatically increase NIH funding for SMA research. Please let your voice be heard and encourage your friends to visit www.fightsma.org and click the tab titled "Winning in Washington." For over 20 years, FightSMA has worked to build community and to support committed and extraordinary scientists. This life-saving SMA science is propelled by your support. Because of your generosity we can also share Fighter Mom, our women's advocacy program. Any mom fighting any childhood disease or health condition is equipped to be an advocate for her child in every sector. Powerful understanding of SMA is energizing our community as never before. We have come a great distance because of your support and we know that the end is in sight. Warm wishes, Martha Slay President, FightSMA



    Order Detail
    Item Name Price Tax Deductible Quantity Total
    Donate to FightSMA
    Thank you so much for contributing to the fight against spinal muscular atrophy (SMA). $ 25.00 $ 25.00 1 $ 25.00


    Total $ 25.00

    ReplyDelete
  37. Hello, Miss Avery,
    I'm very pleased to meet you via your blog and your enthralling adventures. I'm a grown-up now so I have to act like one and so don't get to have all the fun and magic that you do so, if you don't mind, I'll just live vicariously through you.

    I don't know if I missed it on your bucket list or if it's not there but if not you should add "Write a book" to your list. You're much more interesting and articulate than most authors and infinitely more fun.

    Also, have you ever heard of a website called "GoodSearch.com"? It's a very cool site where you can list your charity so that every time someone needs to do an on-line search they can do it through GoodSearch AND for each search a small donation is made to your charity. How cool is THAT? Just by doing what they would do anyway the SMA people would get money. WOOO HOOO!

    Thank you, darling Avery, I'm a disabled veteran but you have made my dark places not so dark.

    XXXOOO those are hot pink kisses and bright purple hugs.

    Beci

    ReplyDelete
  38. Like to add Sleigh Ride in the snow on Christmas eve with all the lights on, on Avery's bucket list.

    ReplyDelete
  39. I will pray for you everyday Avery. God loves you, and no matter what doctors say you can be healed little one. Thank you for showing so many people how important and precious each life is and for raising awareness for SMA. Praying.

    ReplyDelete
  40. Hi Avery, my name is Eileen and I am grandmother to Noah Spencer, MDA"S Goodwill Ambassador for the state of Arizona and also afflicted with SMA,he wasn't expected to make it to 10 years old but is now an old man of almost 14, I also have a nephew Dustin Graham with SMA and he is 24.
    I think your bucket list should include a trip to where I live Tombstone Arizona home of the famous OK Corral Gunfight. Get your picture taken with a cowboy, a stagecoach, at the Boothill Graveyard and of course with me. Keep smiling baby!

    ReplyDelete
  41. Darling Avery, you are such a beautiful soul. You have hardly arrived here on Earth and you are spreading so much love all around the World.I'm writing to you from Nova Scotia, Canada and wanted to tell you how wonderful and powerful you are. Also wanted to mention a name to your amazing parents, Dolores Cannon. (all we need is love) Lots and lots of love, Andrea xoxo

    ReplyDelete
  42. Hi Avery,

    Love your blog!
    I wanted to let you know I donated $25 to fight SMA after reading your story, so you can keep track of reaching your goal of raising $1M.

    Good luck and keep up the great work!

    ReplyDelete
  43. My heart goes out to your family baby girl. May they be blessed with peace. I was in tears reading clips of your blog and you are truly an angel.

    ReplyDelete
  44. I have to go out of this beautiful blog i cant stop crying... :'(

    ReplyDelete
  45. Hello My name is Tina my best friend of 26 years sent this blog to me and when I read it I felt I should write something. I'm so saddened from your loss, I have a great understanding of what it's like because I too have Muscular Dystrophy Spinal Muscular Atrophy type 2. The difference is that I am 32 years old, but I do know almost to well about the bucket list I found I grew up fast because I wanted to try and experience as much as I possibly could. I was told a lot of the same things about not walking and breathing would be an issue and lung infections would be an on going problem and that I would not live to be 2 years old.All types of M.D are very terrifying diseases, the progression of the deterioration can be slow or very rapid.I send you strength and love again I'm so sorry for your loss and at the same time I am gladden for peoples gain learning about SMA. Best wishes to your family and god bless.

    Toronto Ontario Canada

    ReplyDelete