Team Cannon CAN

The crazy hot temperatures have been tough on my little guy…. He has spent a lot of the past few days laying in bed watching TV because the heat just drains him. Yesterday I was able to get him outside on the bounce house for a little bit and he had so much fun! This smile will forever be my why 💜💜

We’ve been busy and I’ve been slow to post…. Cannon has struggled a bit the past few weeks. I am typically able to keep him on a pretty decent sleep schedule, but the last few weeks it’s been all over the place. Sometimes he’s up till 2 am, sometimes I can’t get him out of bed in the morning. He has been wanting to spend a large part of the day in bed watching TV - and if you know Cannon, you know that is NOT the norm, typically he is go, go, go. He is still mischievous as ever - he flooded the bathroom the other day, and has tried on more than one occasion to drag the house into the house… to water the house? Yesterday he picked out $100 worth of flowers at Home Depot, he was so excited to plant them but then decided he was “hot” and told me to do it while he laid in bed 🤷🏼‍♀️ I try to keep him busy with arts and crafts on his lazy days, but I’m really hoping he gets back to his active self soon. He’s missing school, and asks almost daily if he can go to school, I’ve never seen a kid love school as much as him. We have struggled with aggression and have had some communication struggles as well, but despite everything he’s still my happy little Cannonball and I couldn’t imagine this world without him 💜

Rainy days are for jumping in puddles 💜 Cannon has been fatigued lately, and not nearly as active as usual … so when the storms stopped and Cannon made a run for the playground, I couldn’t complain. He had so much fun running and jumping in puddles, and was soaked head to toe - he seems to think that counts as a bath, and I’m not up for arguing, so we will go with it 😉

Day 1 of summer vacation - Cannon eloped several times, I should really compile all the Ring clips of Carsyn and I chasing after him and make a video 😂 new child locks have been ordered 🙂 we went to the park, watched Smurfs, played with kinetic sand, painted, baked a cake in honor of my nephews birthday and sang to a doll, decorated the yard for Christmas, and Cannon made me set up a table and chairs in the garage and made his brothers and sister sit and watch him eat…. It’s Cannon’s world, we’re just living in it. Today mommy is going to work, and Cannon can’t wrap his head around that because mommy’s job is to stay home and play with him… but mommy is happy to go back to work part time and of course I’ll be counting down till I come home and see what evening shenanigans Cannon has in store for us 💜

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!

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 💜

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 💔

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 💜

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 💜

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. 💜