Wondrous Willow

Wondrous Willow Follow us as we document and share Willow's metamorphosis as she navigates life with INAD.

Operation WOW (Willow's Outing Wishlist) brought us to 2 different Oilers games this month. The first thanks to Sol's lo...
29/03/2026

Operation WOW (Willow's Outing Wishlist) brought us to 2 different Oilers games this month. The first thanks to Sol's lovely cousin who ensured we were well taken care of through the entirety of our stay, and the second thanks to the Stollery Children's Hospital donors.

Oilers-loving Miss Ma'am was buzzing with excitement at both games, and she totally fed off the energy from the crowd. Every time the crowd cheered, she would throw her hands up and yell with everyone. We were thoroughly spoiled each game by every person involved in our experience, and it has left a deep appreciation of just how kind and compassionate people are.

Each outing is so bittersweet. We love seeing the joy and excitement in our children, but then we're reminded that this wouldn't be happening if INAD wasn't quickly taking our little one from us.

Please remember Willow, our Oilers crazed little girl 🧡💙

Over the weekend, Sol and Miss Ma'am got special invites to Alberta Dreams Daddy's Little Sweetheart Ball. They both got...
25/03/2026

Over the weekend, Sol and Miss Ma'am got special invites to Alberta Dreams Daddy's Little Sweetheart Ball. They both got dressed up all fancy-like and enjoyed an evening together. It was cut short on account of Miss Ma'am being overwhelmed and tired - so she was ready to dip quite early in the evening, and Daddy was happy to oblige. Being around typical kids her age is difficult, because it's a easy side-by-side comparison of the increasing gap in physical and cognitive function. And every time there's a reminder of that, it also brings to the forefront that INAD is quickly robbing our girl of everything that is her.

Thank you Anthony, LUX, and everyone on the Alberta Dream team for gifting this experience to us. Please remember our Willow - the little lady who looks stellar in green 💚

Operation WOW (Willow's Outing Wishlist) came into full effect, beginning February 5th - just 6 days after receiving Mis...
20/03/2026

Operation WOW (Willow's Outing Wishlist) came into full effect, beginning February 5th - just 6 days after receiving Miss Ma'am's diagnosis of Infantile Neuroaxonal Dystrophy. This condition will rapidly take everything from her - including her already limited ability to walk and talk, her ability to see and hear, her ability to swallow and breathe, her ability to void, her memory, and eventually her awareness. The decline has already started, thus so has our mission.

It began with a trip to Calgary, Alberta to visit one of Willow's namesakes, Grandma Rebecca, on her birthday. While there, we visited Telus Spark for the first time, and went to the zoo where Willow got to see a hippopotamus up close. It was a wonderful trip to kick off Operation WOW.

We look forward to upcoming outings and other memory-making opportunities to enjoy with Miss Ma'am, and will of course share those experiences here with those following our journey.

Please remember her. The little girl with a love of hippopotamuses 🤍🦛

19/03/2026

Operation WOW (Willow's Outing Wishlist) Update:

On March 11th, the family took a trip to Calgary, Alberta where we experienced Pemium VIP access to the Gabby's Dollhouse Live theatre show, all thanks to Kay's sister, Jenn. As evidenced in the video, Miss Ma'am was thrilled. She wore a new Gabby's Dollhouse dress that complimented her leg braces perfectly, and she had a set of kitty ear headband that she tolerated for the entire experience. Her brother was such a great sport, and also wore a set of kitty ears. We even saw him wiggling away in his seat when the music picked up. A great time was had by all.

Please remember our little girl for her deep love of all things Gabby's Dollhouse and kitties 🐱🤍

15/03/2026

Operation WOW (Willow's Outing Wishlist) is in full effect. While we're still grieving Miss Ma'am's INAD diagnosis - a incurable, untreatable genetic condition that will take everything from her - we've embraced memory-making-mode so she can get the fullest possible experience of life.

Two weeks ago, Cedar Ridge Estates (formerly Parkland Equestrian Centre) graciously donated space, and Dan Duckering from DD Ranch Alberta supplied horses and managed to source an adaptive saddle so our kids could ride for the first time. Later they also arranged a surprise wagon ride, where we got to tour the property a few times. They sent us home with personalized swag, and offers to return to pet some animals at a later time.

Thank you so much to everyone who helped make that happen. We're excited to return soon 🐎🤍

10/03/2026

Child loss is not something I would wish on anyone. And staring down the barrel of it is terrifying.

My heart grieves for what the future entails for our family. Our 4 year old girl, Willow, has INAD - Infantile Neuroaxonal Dystrophy. This untreatable, incurable genetic condition will take everything from her - her already limited ability to walk and talk, her ability to see and hear, her ability to chew and swallow, her ability to void, to breathe, her memory, and eventually her awareness. She's currently utilizing a walker, however she soon will need to transition to a wheelchair as her mobility deteriorates.

This little girl was so deeply loved from the time the pregnancy test turned positive. Her brother took to her immediately, and us as her parents became confident in her being the final piece of the puzzle that completed our family.

This video is her at 2 days old, meeting her brother who had stayed the night at Grandma's farm. It's incredibly tough as her parent to watch this video, remembering how whole we felt, how complete the picture was at the time.

Please remember Willow. Our sweet Miss Ma'am.

Can you do us a favour? Would you share where in the world you're following our little girl's journey from?As Willow's p...
05/03/2026

Can you do us a favour? Would you share where in the world you're following our little girl's journey from?

As Willow's parents, our fear as we navigate this medical journey is that she be forgotten. She's so young that she hasn't had the opportunity to make a big impact in the world, and because of this horrific condition, she won't have the opportunity to change that. In seeing this page grow, it's comforting knowing sharing her, making her little life known, will help her not be forgotten. Knowing what areas of the globe we have reached would be lovely.

Here's our girl on each of her birthdays - our goofy, feisty, willful Willow. Please remember her.

Last post began by sharing Willow's brother as one of her most favourite people in the world, but he doesn't hold that t...
01/03/2026

Last post began by sharing Willow's brother as one of her most favourite people in the world, but he doesn't hold that title exclusively - a very close second is the man pictured here. Known to the world as Reg Sr., he holds title of Mooshum (Cree for Grandfather) in our household, and is undoubtedly Willow's other favourite.

Their bond is undeniable, and it has been incredible as her parents to witness it grow from the time he first held her when we were measuring her age in days, to now, as a feisty 4 year old. He's the one who ignited Willow's love of the Oilers, he helps her organize her puzzles, and is the one who sneaks her extra Gabby's Dollhouse fruit snacks after Mama and Daddy cut her off.

Please remember our Willow as being an absolute Mooshum's girl.

Willow's big brother, Trexton, is one of her most favourite people in the world. He was almost 5 years old when she was ...
24/02/2026

Willow's big brother, Trexton, is one of her most favourite people in the world.

He was almost 5 years old when she was born, and was incredibly excited to become a brother. We had read all the articles, and taken in all the advice on how to smoothly introduce a new baby... but we needed none of it. He was immediately enamoured by her, and she took to him right away.

Having a high-medical needs child has been worrisome in every aspect. But seeing them together, being rowdy together, having the typical sibling squabbles, is incredibly reassuring that each of them is experiencing the fullness of what having and being a sibling offers. The want for life to be as normal as possible for as long as possible is strong. And while that's now changing because of Willow's steep and swift decline with INAD, we're making the best of it.

Willow is lucky to have the best big brother, Trexton is blessed to have such a loving little sister, and we as parents are incredibly fortunate on this being our little family.

Please remember Willow - Trexton's little sister. She keeps him on his toes, and they sometimes bicker, but she adores him.

20/02/2026

Willow Rebecca-Julia Walters.

Born July 4, 2021, Willow was supposed to peacefully enter the world in a birth pool at home. Instead, our firey girl was already showcasing her rambunctious spirit by changing up the welcoming plans. We transferred to hospital when she went into distress after Mama's water had been ruptured for over 24hrs. Our midwife was a champ in handling both Mama and baby's stubbornness to have little intervention. However, this stubbornness didn't prevent baby from needing some help breathing once born.

After 30 minutes of pushing, baby came and Daddy quietly said that baby was a girl. A sensitive discovery, as we had intentionally avoided finding out baby's gender during pregnancy. For those who don't know, Kay is a former foster child with an incredibly turbulent childhood; a large part of that due to the strained relationship between her and her mother. Her mother was a broken soul with trauma of her own. Instead of working through that to transform it, the hurt and anger was instead transmitted onto Kay. It manifested in a lot of physical and psychological abuse where she was sometimes kept from school to hide the results of these rageful episodes. This being Kay's only experience with a mother-daughter relationship had Kay carrying immense fear of being a girl mum - she didn't want to continue that cycle of abuse. But the instant baby was laid on her chest, that fear completely disappeared. Sol was able to capture this tender moment on video, and it's one of Kay's most treasured memories.

Pictures were taken of the placenta, as Mama is fascinated by all things pregnancy-related, and baby had a 2 vessel umbellical cord and valementous cord insertion - both of which are now considered "soft signs" of something genetic having gone awry.

Willow was the name chosen, as it was incredibly meaningful to our walks through life. Having both her parents come from toxic origin families, who's people had enabled unhealthy, toxic cycles to thrive from unhealthy, abusive people, we felt that Willow, a tree that could push roots with having a single broken branch stuck into soil and begin an entirely new legacy independent from the tree in which it came from, was serendipitous. Her middle names were easy choices. Rebecca, after Kay's lifelong favourite person in the world, her grandmother. Julia after Sol's unofficially adoptive mother - a treasured woman who chose to stand in a gap that never should've been. The names of 2 beautiful souls felt fitting to give to such a precious new life. Sol also loved how Willow Walters rolls off the tongue. "It sounds like a superhero name," is the sentence he would say in response - and boy, does that ever hit home now.

And while we adore her name and use it often, you will also hear her affectionately referred to as "Miss Ma'am" - a nickname given when we were still measuring her age in weeks, but are uncertain now how it came about.

This is Miss Ma'am. Willow Walters. Wondrous Willow. Please remember her.

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Spruce Grove
Alberta

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