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Team Cannon CAN, Crown point, Crown Point, IN (2026)

05/30/2026

And just like that Cannon completed 2nd grade. It was a year of ups and downs, but he continues to amaze me with his resilience, determination and growth. His vocabulary continues to grow, he’s incredibly strong, and he loves to learn about the world around him. He loves big, is incredibly curious, and is happiest when he’s around people. He loves to be outside, and is currently obsessed with digging in the dirt, bugs and the sun and moon. He begs me daily for another dog and thinks our dog needs a friend (that’s a big ol no!), and also has requested a pet monkey, snake and capybara. Just like your typical kid, he also loves to play Roblox and watch videos on YouTube. I am so proud of his accomplishments and I’m looking forward to a more relaxed schedule this summer, lots of time outside, and by the pool!

05/28/2026

This little guy spent almost all day outside at school yesterday, and despite being exhausted, ran to the playground down the street as soon as we got home from school, because he made a little friend the evening before, and hoped he would be at the playground again. When Cannon connects with someone, he never wants to say goodbye! He is always inviting everyone over to the house, and if it was up to him all of his “people” would live under one roof! We spent hours outside, back and forth between the park and the house, Cannon was so tired but was so adamant his friend would be back…. And sure enough he was 🙂 this little boy is 4 years old and bilingual, but mixes his 2 languages together a bit, he and Cannon truly have no idea what the other is saying, but the last 2 nights they have ran around the playground together playing, and giggling uncontrollably. Their connection had me choked up. If only we all saw the world through the lens of a child 💜

05/26/2026

Lately it seems like the days are becoming more tiring for Cannon. Friday night he was exhausted, but he so badly wanted to go to the playground. We took the walk down the street, and we had the playground to ourselves. Although I could see Cannon was tired physically, the wheels in his head were turning, and we found ourselves having to come up with a plan to secure “the bus” so that the hot lava below us wouldn’t creep in the bus doors and windows 😉 I love his sense of imagination, and I see how determined Cannon is to not let Sanfilippo take away his fun. I pray this is just a phase, but I know the reality is that this is simply part of this ugly disease. I would give anything to save this little boy 💔

05/19/2026

My bestie had a rough day at school today. I don’t know what set Cannon off today. I don’t know what made him so irritable, and unable to regulate. I don’t know what was upsetting him so much he could not control his aggression or big emotions. That’s the ugliness of this disease. Cannon doesn’t want to be angry. He doesn’t want to be mean to people he genuinely loves. He doesn’t want to be frustrated. He most certainly doesn’t want to spend his time having a meltdown over spending his time with friends, playing, learning and enjoying his day. But Cannon doesn’t *choose* to act the way he does. Cannon doesn’t have control over his mind, and emotions in those moments. He is frustrated - perhaps by his inability to communicate his needs, perhaps because he cannot comprehend something, or perhaps because of a pain he’s experiencing that he doesn’t know how to vocalize. There are so many possible factors. My heart hurts for Cannon on days like today. I know all this boy wants is to live his best life. I know he wants to be happy. But sadly I also know his little body is working against him. Sanfilippo Syndrome is an ugly, cruel disease and watching it slowly take my sweet boy from me is a pain that cuts deeper than I could have ever imagined. Praying his body gets the rest he needs tonight and that tomorrow is a better day 💜

05/09/2026

Cannon was so excited for his field trip to the zoo this week! The night before, he put himself to bed at 5:30, thinking the sooner he went to sleep the sooner it would be time to wake up and head to school 🙃 I have said it a hundred times, and I’ll say it an infinite amount more, Cannon has the most amazing paraprofessional - and the title “paraprofessional” seems so inadequate in explaining the relationship between her and Cannon - she understands Cannon on a level that simply cannot be matched, their bond is so special, and because of her, Cannon is able to enjoy the things his classmates are able to, but on Cannon’s level. She truly believes Cannon “CAN” - and those that are not familiar with Sanfilippo cannot possibly understand all that she does day in and day out. Cannon continues to gain vocabulary - when doctors told us he wouldn’t gain any more words, and we should focus on maintaining the words he had. He continues to excel physically - and has no physical restrictions. Cannon was previously in speech, occupational, and physical therapy outside of school - Cannon was NOT a fan! We made the decision to pull Cannon from non-school therapies, and he is thriving - because he continues to receive these services in a school setting, but also organically day in and day out with his super hero para. Cannon relies on her for many things, but she also understands that sometimes Cannon wants to be a typical 8 year old boy, which includes telling her to “hide” on the playground when he wants to look “cool” in front of the other kids 😉 I am forever grateful for having someone who has so drastically improved his quality of life - she is truly my hero, and seeing Cannon’s smile in these pictures is a reminder that God is good, and puts people in your life for a reason 💜

05/05/2026

Cannon and I made cloud dough this weekend…. However Cannon thinks we actually made a new hat. Sometimes, life is all about how you look at it 🤷🏼‍♀️

Cannon has been struggling with the change of season/pressure changes… and the days have been long, and challenging. We went several months with minimal melt downs, and currently meltdowns are a daily occurrence - and his amazing “school mom” and “teacha” work tirelessly to come up with new approaches to help calm Cannon during those moments he’s struggling at school, but unless you’ve personally dealt with Cannon while he is in the middle of melt down, it’s truly impossible to understand how challenging it is to help Cannon calm down in those moments. Cannon has no concept of danger and is quick to elope at any opportunity he sees. He is also incredibly strong (and tall!) and supporting Cannon when he is struggling to regulate his emotions is both mentally and physically draining. I am so thankful for the love and care he receives at school, and when Cannon is struggling at home I remind myself that I will happily go through the most challenging of days with Cannon, as opposed to living a life without him. He continues to let his little light shine and brings so much joy to this world. 💜

04/25/2026

Cannon likes to be busy, and when the weather gets nicer it’s almost impossible to keep him inside… and obviously, we can’t be outside ALL of the time, so I’m always trying to find new things to keep him occupied inside - I didn’t have everything I needed to make homemade play dough, so we improvised and made bread dough with food coloring - it was a huge mess and I’m still scraping it off the kitchen table (why I didn’t put a plastic tablecloth down I don’t know!) but Cannon loved it! Love seeing that smile 💜

04/17/2026

At our old house, we had rocks in the landscaping, here, we have mulch - and it is going to be the death of me 😂 Cannon is always digging and “planting” things in the mulch, and needless to say I am always out there sweeping the driveway and sidewalk…. But to see this little face so content makes my heart happy. The weather is finally getting nicer, and Cannon is able to be in his happy place - outside! I love this boy more than words and I simply cannot imagine a world without him 💔

04/06/2026

Cannon was so excited that the Easter Bunny came! He wasn’t too into looking for eggs, he found one and proclaimed “I won!” - not sure what he thought he was winning, but if Cannon is happy, that works for me! The Easter Bunny knew just what Cannon was hoping to get in his basket… it’s almost like Cannon keeps a running Amazon list that he updates daily 😉 He was a little hesitant to dye eggs at first, but we tried something new this year and used cool whip with food coloring and it was a win! Clean up is a thousand times easier, and Cannon enjoyed doing some taste testing. After an incredibly rainy Spring Break, he enjoyed getting outside to play today even though it was a bit chilly. We are counting down till summer over here! It’s back to the daily grind tomorrow - the next 8 weeks are crazy busy, but then it’s summer time and we are ready to soak up the sun, hit the pool and go on some adventures 💜 I continue to be so grateful that Cannon continues to thrive. This is an incredibly ugly disease and life can change in the blink of an eye - so we soak up every smile, every giggle, and make sure there is always holiday magic. Life with Can is crazy, but I couldn’t imagine any other life 💜

02/12/2026

Cannon and I share a bed. We have since he turned 3. He used to have horrible sleep apnea before having his tonsils and adenoids removed, and I would move him throughout the night so he could breathe better. Cannon also used to elope… A LOT. He has no concept of danger, and despite numerous different types of child locks, Cannon would find a way out of the house - whether it was learning how to undo the child lock, or climbing through a window, Cannon found a way… hence why he began sleeping with me. Cannon no longer struggles with sleep apnea (thankfully!) and he still will elope from time to time when it’s warm out, but we’ve come a long way! However, Cannon still sleeps with me - and I wouldn’t have it any other way. I know my time with Cannon will never be long enough, and I will take every snuggle I can get…. But in addition to sharing a bed with Cannon, I also share a bed with his “friends”, and I have 3 elves watching me. Not pictured is the dog, who also sleeps with us every night. This is a King sized bed, yet every night, I’m hanging on for dear life 😂 I love this little guy, and I will forever be grateful for all of the snuggles 💜

Team Cannon CAN

05/30/2026

05/28/2026

05/26/2026

05/19/2026

05/09/2026

05/05/2026

04/25/2026

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04/06/2026

02/12/2026

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