Team Cannon CAN

I love when I’m scrolling through pictures on my phone and I come across Cannon’s selfies 💜 This face makes me the happiest 🙂

He was nervous as we waited for the bus, but he did it! He’s on his way now, and I’m just here counting down the time till he comes home 💜

This will forever be one of my favorite pictures of Cannon - taken 2 years ago, right before our world came crashing down. 2 years later, he’s still all smiles, he still loves meditating in random spots like on top of the bar, he is still the reason I am permanently exhausted, and he is still my why for everything. He’s off to first grade in just a few days, and while I know it will be an adjustment after a summer of sleeping in, trips to Disney and the lake, late nights, and a very laid back schedule, I know that Cannon thrives on routine and the return to school is much needed. Hoping for another amazing year, and a year of my Bestie continuing to blow everyone’s mind 💜

Just a boy and his baby doll 💁🏼‍♀️ Cannon has always loved this Chuckee Doll, he has no idea it’s supposed to be scary… he tells me “oh no baby has boo boo”. I love his innocence 💜

Cleaning out my closet and came across this… I remember how proud he was to tell me he had his picture taken at school. This was before we knew we would be robbed of so much with this little man. This was before we realized just how cruel life can be sometimes.

Oh sweet boy, I wish so much I could save you. 💔

We’ve been busy this summer! Cannon is soaking up the sun, family time and living his best life 💜 We’re in Tennessee with family and Cannon has been loving swimming in the lake and getting to spend time with his cousins, Aunts, Uncles and Grandparents! The days have been long chasing this guy around, as he has no concept of danger, but seeing this smile and pure happiness makes it all worth it! 💜

Cannon has been telling me for quite some time he wanted me to shave his head bald - he decided to take matters into his own hands and took a Bic razor to his head… right before vacation 🤦🏼‍♀️ life with Cannon is always an adventure!

We’ve been struggling lately. Cannon needs a routine, and while we love the extra time we have to do fun things in the summer, we also see how the lack of routine impacts Cannon. Cannon’s happy place always has been outside. When he’s over stimulated, I always know where to find Cannon… on the side of the house, with his Sonic blanket. This boy is my reason. He’s what keeps me going on the most challenging of days. I would not change him for the world - but I would change the world for him. I love you, Bestie. And I’ll never stop fighting for your chance at a future. 💜

Oh how I love this boy. I cannot imagine a world without him in it 💜

I simply cannot put into words how amazing Cannon’s Make A Wish trip to Disney was. From being treated like a VIP by Southwest Airlines when we kicked off the trip, to staying at Give Kids The World and experiencing the kindness, generosity and love of volunteers who give up their time to ensure these kids and their families have a magical experience, to the incredible experiences we had at Disney and Universal - the trip was more than we could have ever hoped for. I was so hesitant to take this trip knowing Cannon’s behavior when he is over stimulated, and the challenges we face day to day when taking Cannon to public places, but taking this trip through Make A Wish made it possible for us to experience the magic of Disney in a way that worked for Cannon. We will forever hold on to these memories, Cannon smiled ear to ear with joy each day, he loved meeting all of the characters and feeling the love from so many. We are so, so grateful for all of the Make A Wish volunteers and donors who give these experiences to the most deserving of kids.

Perfect way to start the day… more hugs from Mickey and Minnie who visited Give Kids The World this morning! Cannon’s favorite part of this trip has definitely been the countless hugs and trips to the ice cream shop! 💜 Now we’re off to Universal!

One of Cannon’s favorite parts of this trip is unlimited free ice cream all day at Give Kids The World - he made 4 stops to the ice cream shop yesterday and was seriously contemplating a 5th stop after an evening swim. Yesterday we took it easy, swimming, decorating his star, getting a glitter tattoo, and an evening swim while watching a movie in the pool with his big brother 💜 Today Cannon is well rested and we are off to Magic Kingdom!

We went to Universal yesterday and Universal truly rolls out the red carpet for these kids. Cannon loved seeing all of the characters, and as we were leaving the park, he had to stop and show every security guard and police officer all of the pictures of him with the characters! Everyone was so sweet and Cannon is truly having the best time 💜

It was a LONG day but we made it to Orlando! Cannon was so excited when the limo pulled up this morning - he loved blasting the music and dancing! He struggled at the airport when he realized we couldn’t simply walk into the airport and board the plane… but Southwest treated him like a true VIP and he wanted the sweet lady from Southwest to come with us 🙂 We arrived at Give Kids The World and Cannon enjoyed being pushed around in a stroller and a little train ride. He has already learned how to unlock the door and escaped, he locked himself in the bedroom and called someone and yelled “help! under arrest mama!” And then laughed and laughed… and he ran outside naked when they were here delivering all the park tickets… but he’s tucked in bed and sound asleep now. Hopefully tomorrow he’s a little calmer, we will be off to Hollywood Studios in the morning so he can see “yee haw” (Toy Story) now off to bed for the rest of us…. Chasing Cannon is exhausting!

We leave for Disney tomorrow and Cannon needed a haircut… but he was tired and insisted it was bedtime, so we compromised on a haircut… in my bed.

I love you for all that you are
All that you have been
And all that you will you be 💜

Cannon is soaking up summer break. Of course, he loves to be outside as much as possible! He is SO excited because we head to Disney in 5 days! He’s never been on an airplane and I think the airplane ride is more exciting to him than the actual trip to Disney! 😂 of course, there will be plenty of pictures 🙂

My bestie had his last day of kindergarten today - at the beginning of the year we would have to put him on the bus kicking and screaming, but now he happily runs down to the bus each morning! Sometimes he stops to put a show on with a little dance or song, or to pick a dandelion out of the yard 💜 He has gained new words, new skills and become more independent - he even stopped wearing pull ups! He brings a smile to everyone he meets, loves his Best Buddies, his paras and teachers. This boy has the greatest Army behind him. Cannon will miss all of his friends, but we have a lot of fun planned this summer! 19 days until Disney! 💜

This little face gets me every time…. After speech therapy the other day he thought he was being all kinds of funny when he climbed into the front seat and said “let’s go!”

Cannon has 4 days left of Kindergarten. We have a fun summer planned with a trip to Disney in June and Tennessee in July, and as excited as I am for some down time, I’m overcome with emotions.

I was SO nervous for Cannon to start Kindergarten. Cannon is the age when kids with Sanfilippo typically lose their vocabulary and begin regressing. I didn’t know if the Cannon I sent off to Kindergarten back in August would be the same Cannon completing Kindergarten in May.

He most definitely is NOT the same Cannon. He is braver, he is smarter, he is stronger. He’s moving mountains and he’s just getting started. His personality continues to blossom, his speech continues to grow, and his ability to do things independently continues to increase.

We’re fighting this fight, and we won’t give up. Cannon loves life, and life loves him back. As long as Cannon continues to fight, we will be by his side cheering him on, advocating for him, and pushing him.

Every night I ask Cannon “who is stronger? Cannon or Sanfilippo?” And every time, Cannon makes his little muscles and screams “Nannon!” (His version of Cannon)

Yes “Nannon”, you most certainly are stronger. Keep fighting, bestie, I love you BIG. 💜

Check out this little athlete 💜 I was worried how Cannon would do, as large crowds and unfamiliar places can be overwhelming for Cannon - but Cannon did amazing! Watching him in his element, seeing his joy, and seeing the love Cannon’s best buddies have for him, was nothing short of amazing.

It was a long day, and Cannon did so well navigating a day that was not his typical routine, a new place, and a lot of noise! I don’t think he ever stopped moving and the level of comfort he has with his best buddies, teacher, and para professionals was the reminder and validation that Cannon is in the right place. I don’t think we could have asked for a better team for Cannon, and it is not lost on us how lucky we are, as we know many families struggle to get the level of support needed for a child with many special needs.

I’ve said it before and I’ll say it again, Cannon has the absolute best Army behind him, and we are SO thankful and filled with so much gratitude. This boy is going to move mountains 💜

There’s some things in this whole world I can’t do nothin’ about…
But I can love you like I’ve always done
And when the hard times come a knocking,
You won’t ever see me run…

I love you, Bestie. Always and forever.

Maybe you were assigned this mountain to show others it can be moved 💜

May 15th is MPS Awareness Day. Sanfilippo Syndrome is also known as mucopolysaccharidosis type III (MPS III). Cannon was born missing the enzyme that allows his body to break down Heparan Sulfate, as a result this builds up in his body and will eventually rob Cannon of the ability to walk, talk, eat… and ultimately take his life. Cannon will suffer pain and seizures and the happy, cheerful smile everyone has come to expect from Cannon will be taken from him. Today and every day we fight to spread awareness and we fight to find a cure for Cannon, all of his Sanfilippo siblings and all of his friends fighting other forms of MPS like Hunter Syndrome. We won’t give up and we will never let go of hope 💜

Happy Mother’s Day to all the amazing mamas out there! Treat yourself today 💜

Why dirty a cup?!? This is life with Cannon 🙂

Cannon is happy 98% of the time. He’s happiest if he’s able to be outside, dance, or spend time with his big brother, Cooper. This boy loves life and deserves a future 💔

This little guy has been sick all week… he even had to miss his first school field trip 😞 After sleeping most of the afternoon, Cannon finally seems to be feeling better, giggling away and tormenting his older siblings. This smile means everything to me 💜

Life with Cannon… he found some mud and fully embraced it. He left muddy little foot prints throughout the house, but all I could do was smile.

Enjoy the little things for one day you will realize they were the big things.

Cannon had some testing done at the Children’s Hospital this week… his big brother knows how anxious I get over these appointments and spent “Senior Ditch Day” supporting his little brother and Mom 💜 There was a picnic table and small playground right by the entrance so of course Cannon had to stop for a snack and play a bit 😊 Cannon’s results came back great. He has a strong little heart.

Cannon continues to keep us smiling… whether it’s his dance moves down the driveway to the bus every morning, his little smile and giggle as he says “your butt ew bro”, the way he loves all 337 of his stuffed animals and lines them up in bed, at the kitchen table, and outside on the deck, or how most recently he has picked up an English accent and no longer calls me “ma”, but “Mummay” …. No matter what he’s doing, he’s doing it with a smile and making sure all those around him have a smile too.

I love this little boy more than I can put into words. He’s my reason, and I will never give up hope. 💜

This little guy loves to be outside - and he loves going around the neighborhood whether it’s to see the boats on the lake, say hi to the neighbors or just going for a joy ride, so mommy decided to surprise him with a golf cart. Unfortunately, I was out of town when it was delivered so I wasn’t able to capture his excitement, but he loves it! It’s custom painted purple (the awareness color for Sanfilippo) and he will be getting some custom graphics soon. The only problem is he doesn’t realize it’s not like his little 4 wheeler and he can NOT drive it himself 🤦🏼‍♀️ the other problem is it’s April 20th and he’s wearing a winter coat… we’re counting down till summer!