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Disability Parenting Series: Mindfully Inclusive

Oct
12

Disability Parenting Series: Mindfully Inclusive

Vincent wearing the “I have a whole Universe in my mind” tee from The Inclusion Collection

Meranda is the founder of Mindfully Inclusive, which was created from her desire to advocate for inclusion in her community, specifically for children with disabilities.

In 2017, she became a mom to Vincent, a boy with a rare genetic disorder. Entering the world of special needs parenting required her to step away from her career and focus all her efforts on ensuring her son lives his best life. In 2020 she gave birth to a baby girl, Violet. She adores her older brother and keeps Meranda busy.

Meranda wishes to bring mindfulness and inclusion into homes through educational and inclusive toolkits that help spark joy and discussion for those with and without disabilities. She and her husband Drew raise their children in Spruce Grove, Alberta.

“I struggle with the unknowns”

Kathy: When it comes to Vincent’s diagnosis, what’s been your greatest fear, struggle, or worry?  

Meranda: For me, I struggle with the unknowns of the future as it’s still a little foggy. I don’t know a lot of other parents to children with Vincent’s exact rare microdeletion (3q13), at least not many with older adult children. And because he doesn’t walk I wonder how much longer I will be able to lift and carry him for.  My heart says forever but my brain is constantly trying to rationalize and make a plan for how we can have everything he needs for his future–including a more accessible home. It’s a worry that we won’t be able to provide this for him.

I try to be mindful of my own body and care for myself when I can because I know if I were to ever get injured it would be very difficult to care for him. That would be my absolute greatest fear. He relies on me from morning through night, and I know physically it will get harder on me. It’s hard to know exactly what his future needs really look like. I know he will likely rely on us to care for him for as long as we possibly can, and as his mom, that will be for as long as I live. He is my biggest priority in life and always will be.

Photo by Tough Mother Photography

“I’ve surprised myself”

K: What’s been the best surprise about having a child with a disability? 

M: I think I’ve surprised myself at how natural it has been to become a caregiver and advocate. I’m fortunate that I’ve found it to be such a blessing to have a child with a disability. I think it’s opened my eyes to the beautiful diversity found in this world and I am continuously surprised by how much joy can be found in the littlest things. We are constantly finding miracles in our days, applauding Vincent for the tiniest but truly the biggest milestones for him.

It is so easy to take things for granted when we are gifted a child without a disability. Now that I have a daughter as well, I find I see the differences more. It’s always so mind-blowing how natural and easy the next milestone is for her. But it’s different when a child has to work so incredibly hard for an extensive period of time just to achieve something that may be viewed as so simple. Things like head control, or bringing a spoon to the mouth. I’m surprised by all the hard work we’ve had to put in for these simple tasks, but also amazed at how it proves to show it’s always worth it. We’ve come so far.

“There’s always a parent who has gone through what you have”

K: Who or what has helped you the most?

M: My entourage of moms who walk a similar path as mine has been my saving grace. I went from feeling so alone as a new mom receiving a diagnosis for my child and going through surgeries, hospital stays, seizure medications, etc to doing it alongside some amazing powerhouses. We’ve been able to relate to, and lean on each other through some really difficult times. I know now there is always a parent who has gone through what you have, or tried the same medication as your child, or just felt the same waves of emotions you’ve felt. Just to have someone else say ‘me too’ during difficult times helps take a little weight off our shoulders.  

K: What do you hope society changes as your children grow up?

M: I personally love seeing children with disabilities have access to all things other children have access to–like parks, indoor playgrounds, amusement parks and attractions, water exhibits etc. There’s still a long way to go to make this world fully accessible and it doesn’t take long for us to realize that when our son uses a wheelchair.  My biggest hope is the world becomes more aware of this need and disability families don’t have to fight for it alone. A disability is something anyone can acquire in their lifetime so we shouldn’t take any steps for granted.

“I want the whole world to embrace neurodiversity”

K: What do you wish everyone knew about people living with disabilities?

M: They are still human, they have beautiful personalities, they are full of joy and pure innocence. Disabled people want and deserve the same respect and opportunities in life as those without disabilities receive more readily. If we could take the time to get to know them, hold space for conversation with them, it would help cultivate inclusion and showcase just how equal they are. Often people living with a disability don’t want to be seen as more than, inspiring or superior, they just want to be seen and heard.

K: What is your favorite piece from The Inclusion Collection and what does that design mean to you?

M: This is so hard! I have 2 favs, firstly the ‘I have a whole universe in my mind’ speaks to me because Vincent is nonverbal and we know he has so much to say.  He has many ongoing thoughts running through his mind so seeing him wear that shirt just makes me smile because it’s true!  Secondly, I really love the ‘Still Human’ toque. I feel like I say and think this all the time.  I want the whole world to embrace neurodiversity as if we are one. We are all equal and we are all human. Whether we have a disability, have made mistakes, or been through hardships, we are Still Human.

–Kathy

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