Jacksons journey

Jacksons journey This is a space for updates and entries on Jackson's journey through health and wellness.

This is Jackson’s first summer! He’s loving the time at home, desperate for his teachers and the structure that school b...
08/01/2019

This is Jackson’s first summer! He’s loving the time at home, desperate for his teachers and the structure that school brings. He’s starting to walk again, being very timid and cautious of every thing. In medical perspective -> he’s a 5 year old learning to walk. He’s much bigger and falls hold more consequences. He stopped walking 3 months ago after a fall from the trampoline. His ailment went from sprained ankle to inflammation in his hip. So the recovery has been long. During this time; we’ve noticed that he wasn’t as cranky. Seems that prior to his fall - he spent a great deal of time physically exhausted. We’ve since decided to get him a wheel
Chair. So he can rest - yet move when he wants. It was a hard decision for our family, and I really think it’s what’s best. He can choose whatever he needs whenever he wants. Life is about giving him options and setting him up as best as we can.

09/10/2018

Righty playing mine craft.

09/10/2018

Walking to the garbage in the kitchen. Dude is amazing.

Jackson has started Junior kindergarten.  He’s loving being at the same schoolAs his big brother. The transition *knock ...
09/10/2018

Jackson has started Junior kindergarten. He’s loving being at the same school
As his big brother. The transition *knock on wood* has been a successful one.

He’s growing so much. Speaking in 2-3 word sentences. Walking! Using rightie. This kid. I’ll post some videos of walking and righty shortly.

This thing is happening with my monkey. He’s growing up! I get pictures sent from his daycare and I think ‘who is this b...
10/24/2017

This thing is happening with my monkey. He’s growing up! I get pictures sent from his daycare and I think ‘who is this boy?’ Everyday he’s gaining new skill and insight. And everyday I beam with more pride!

Cute things he’s doing right now;
🤣 he’s learning that his last name is Dooley
😲he calls his dad ‘John’ and yells it
😘 I kissed him the other day and said ‘you are my man’ he said ‘you man!’
😵kid eats only grapes for dinner?!
🤡he can’t get enough of his books - yesterday at school he sat at circle time and read ‘the monster under my bed’
🎃he’s starting to walk and take steps using only arm support!

I’m so proud of this monkey

Happy thanksgiving everyone.  We have a lot to be grateful for! This little man is starting to free stand.  Learning his...
10/08/2017

Happy thanksgiving everyone. We have a lot to be grateful for! This little man is starting to free stand. Learning his words (including colours) and is just such a delight. We are grateful for his health and his opportunity to be such a character!

Happy thanksgiving!

two years have passed since this day.  It feels like just yesterday, and like a lifetime all at once.  I'll never forget...
04/28/2017

two years have passed since this day. It feels like just yesterday, and like a lifetime all at once. I'll never forget the feelings of handing my sweet baby boy over to have have half of his brain disconnected. I wonder if this feeling of AWE, and amazement will ever get old? two years ago jackson was given life by the skillful and knowledgeable dr at sickkids. He was given a chance to use his walker. To make us laugh. to love us so much. a chance to be so friggin stubborn. A chance to live a seizure free life....and soon (next WEEK!) a medication free life. Today we remember. 2 years....and are so grateful that we've been given a chance to love and live as we do.

04/17/2017

Sorry I'm promoting my son to talk with his mouth full. I get so excited and forget about basic pleasantries at the best of times.

One. Two........

Be still my heart. I've been chalked full of emotion today.  Like to the brim.  As a special needs parent the words 'it ...
04/11/2017

Be still my heart.

I've been chalked full of emotion today. Like to the brim. As a special needs parent the words 'it isn't fair' stings. I've been selfish. Thinking about how unfair things are that I have to choose between another therapy or soccer for jackson. It's not fair that we can't attend that event that just isn't wheelchair friendly or even appropriate for me to hold jackson at. That I can't have a night to myself as jackson still needs me to fall sleep. It's not fair that I have to juggle therapies and appointments and dr's and assessments. That I have to read report after report suggesting my son is 'severely delayed' despite my juggling and paying for private therapies and mind numbing attempts. Despite me trying so hard to help it become less unfair. And. Guess whose not complaining.....guess who gets up in their walker and tries and tries. Guess who despite their mom making it all about her, accomplished yet another milestone. Guess who silently (and not so silently) leads his own path. His own milestones. His own success.

So after the tears stopped flowing tonight. After the gentle kisses from my very special son. After our nightly ritual of cuddles. I look down to see him embracing his right hand. I have so much to learn from this wee man. So much.

This wee man is moving mountains.  We are on his last med wean now. It should be early may that he's med free and seizur...
04/07/2017

This wee man is moving mountains. We are on his last med wean now. It should be early may that he's med free and seizure free! Only 2 years after his surgery. He's looooving the outdoors! Last year in the summer he was barely mobile - this year we can barely stop him! Can't wait for summer with him.

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Toronto, ON

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