50

Today we reached a milestone as we have now completed over 50 cecostomy flushes.

We have learned so much since we started with this in September. It has been challenging and overwhelming for us both. We are still navigating through some bumps but I’m hopeful better days are ahead. 🤞

We have embraced the cecostomy tube from the very beginning and are teaching Stalen that he can be proud of himself and confident in his skin regardless of a diagnosis like Autism or supports like a communication device or a cecostomy tube.

But, the greatest lesson is really being taught to us.

Stalen is showing us every day that you can face many obstacles in life yet still find a reason to smile.

#findthejoy #blessed #gratefulheart #ostomyawareness

Courage

We see and know so many people everyday who act with courage.

Courage is a soldier (or military member)who is willing to sacrifice everything for his/her country.

Courage is a firefighter running into a burning building to save a child or a police man apprehending an armed suspect.

Courage is seen every day in doctors, nurses, paramedics and first responders.

Courage is people who respond and stand tall in the face of danger and the unknown regardless of the consequences.

Courage is all around us. Sometimes it is right in front of us and other times it is hiding, waiting to be found.

Courage can be natural or it can be summoned from deep within. It doesn’t come in litres or kilograms…it simply can’t be measured.

Courage is often quiet and subtle, it rarely yells, “look at me”.

It is seen in those who are true to themselves regardless of what others think.

It is seen in individuals who stand up for their beliefs even if they stand alone.

It is seen in the underdog who rises to the occasion despite the fear of losing.

It is seen time and time again in classrooms, hallways and school buses when someone stands up to a bully.

It is seen in hospitals and doctors offices when people are receiving treatments, medical procedures and life changing news.

It is seen in people who are fighting big battles whether they are mental illness, health or personal.

It is seen in parents who fight for diagnosis and supports for their children.

Courage is the rumble in the voice speaking for those that do not have a voice.

It is felt in the unity of those fighting for equity, equality and justice.

And sometimes courage is hope for tomorrow.

When the day has won, when your exhausted and defeated…courage is knowing you will try again tomorrow.

Courage is a beautiful thing!

Hope on. Journey on.

Winter Ready!

You may see a little boy wearing a hat, gloves and winter coat. But, you don’t see the hard work,sweat and tears that happened behind the scene to get him to this point. So many amazing people have helped us with this over the years 🙏

Winter attire really is a struggle. It is heavy, itchy, restricting, touches the skin etc. Stalen has many sensory issues which prevent him from wearing certain things and certain textures. It has been an ongoing challenge that we deal with each year as winter approaches especially since we are in Canada. He sure has come a long way!

We started several weeks ago (the earlier the better) building up his tolerance to wearing a hat and then slowly incorporated the coat and gloves. I set small goals for him to wear his hat both inside and outside. Distraction is key! I put his hat on and let him watch his favorite commercial on YouTube or while he eats his favorite snack. He has worn it from the house to the car and to the nearby mailbox. Each time he wears it for a little longer.

I know when the snow flies and the freezing cold comes we will be ready. We are onto snow pants and the dreaded poisonous winter boots next 🤞😬

AAC progress

Stalen is working hard every day to become more proficient with his proloquo2go. We are trying to incorporate it into all aspects of life including conversations.

“Hey it’s me Stalen. This is my dog Cooper. He eats everything and poops a lot. Do you have any pets?”

Excellent for Effort!

There will be good Halloween’s, bad Halloween’s, some horrible Halloween’s and some great Halloween’s. This one is excellent for effort!

He wore the costume, he walked up steps, he carried the pumpkin, he allowed the photos, he helped carve a pumpkin….we had many successes.

So when the noise was too much, the agitation started and anxiety went to overdrive….I quickly and happily decided that Halloween was done.

There really is no place like home, your favorite chair, your favorite people, your delicious snack, Jingle Bells in the background and watching Charmin toilet paper commercials.

This is our Halloween…it may be different next year and it may be like this every year. But, there’s still no place else I’d rather be 😊🎃👻❤️

Ostomy Awareness Day

It’s World Ostomy Awareness Day!!
I couldn’t be more proud of this sweet, brave boy who just had his cecostomy only 8 days ago. This is real life. No one said it would be easy 😅 but I pray it will be worth it. I am excited for his quality of life to increase and for him to be pain free.

It’s about the people

I cooked a delicious Thanksgiving supper of turkey, homemade stuffing, potatoes, cranberry sauce, carrots, squash, and gravy with pumpkin and apple pies for dessert.

Stalen had his usual supper. His baby purée pasta, a Greek yogurt, an applesauce, some veggie crackers and a bottle of water. This is the same supper he has had for the last 1000+ days.

Some day I hope we will all sit down and enjoy the same thanksgiving dinner that I prepared -as a family. I know it will happen in due time.

As we ate our dinner, Stalen stood close beside the table giggling and flapping as he watched the charmin’ bears on the toilet paper commercial.

This may not be your definition of normal, but it is my definition of everything. A sweet little boy just happy to be in the presence of people he loves.