Meet Our Muse: Missy

THIS IS MISSY. IN 2019, SHE GAVE BIRTH TO HER BEAUTIFUL DAUGHTER, OTIS JOY. MISSY SHARES HER EXPERIENCE WITH BEING A MOM, NAVIGATING HER DAUGHTER’S HEALTH CONDITIONS AND FINDING GRATITUDE IN LIFE.

MISSY, LET’S START WITH A LITTLE ICE BREAKER! IF YOU WERE STUCK ON A DESERTED ISLAND WHAT THREE THINGS (NOT PEOPLE) WOULD YOU HAVE TO HAVE WITH YOU?

This is every mother's dream come true right now. I would take a nice little beach towel, a bathing suit, and some suntan lotion.

THE PAST YEAR HAS BEEN TOUGH ON ALL OF US IN SO MANY DIFFERENT WAYS. BUT AS WE KNOW TOUGH TIMES HELP US GROW — WHAT’S BEEN ONE OF THE TOUGHEST ADJUSTMENTS THIS PAST YEAR LIVING IN A GLOBAL PANDEMIC? AND HOW DID YOU FIND GROWTH THROUGH IT?

Raising a disabled child— that experience for any mother or father on its own is very lonely. In my experience, it's very difficult to relate to people, oftentimes. The pandemic brought a larger chasm in between your connection with people. That's been really hard because we all need connection. We need to find people who we can relate to and understand and be understood. However, tough times have a way of creating space for vulnerability and strengthening those relationships. I truly value those people in my world.

What I've learned, not just in this scenario, but a lot of scenarios, is you have to lean into that pain, or struggle, or frustration—whatever it is. Leaning into it minimizes its power a little bit because you realize, ‘Oh, this isn't as scary as I thought it was, or as overwhelming as I thought it would be,’ at least in my experience. Even though it is scary, and it doesn't take away from the intensity of it, you realize how to live with it and not try to avoid it and turn a blind eye to it. You learn to live with it really well, and it creates a stronger, softer version of yourself.

BEING A NEW MOM IS CHALLENGING FOR SO MANY REASONS BUT A NEW MOM TO A DISABLED CHILD BRINGS ON EVEN MORE CHALLENGES THAT OFTEN AREN’T TALKED ABOUT. HOW DOES YOUR ROLE AS A MOM LOOK DIFFERENT TO OTIS AND NAVIGATING HER LIFE LIVING WITH LISSENCEPHALY, CEREBRAL PALSY AND EPILEPSY?

Being a mom is the most difficult, but most rewarding job. I think of the moms like myself who aren't just moms, but we're also caregivers. What's difficult is we're already navigating [the typical mom duties], and then we're navigating the medical complexity side. Not only are you navigating those two separate things at times, but then they intersect and you're trying to figure out, ‘Is my solution a regular mom solution? Or is it a special needs solution?’ I’ve become a problem-solving guru every second of the day because I'm always trying to figure out different solutions. I've learned to use a ton of intuition. That's a muscle I've been growing and I'm very proud— it's insanely helpful. 

But in all of that, it becomes very emotionally taxing, because you're [functioning] in a way that not everyone can understand. There's so much more added on to it with the medical side. It's a whole lot of stuff that we're always working through—it's feeding, mobility, eyesight, it's going to osteo[path] appointments, and making sure she's getting practice there. When you're so concentrated on your child's development and progress forward, it's incredibly easy to lose yourself. I'm learning what I can do for myself because I really can't be on it if I’ve lost my ability to be who I’m meant to be—and I'm meant to be [Otis’] mom. There's power in connecting with yourself, with others and with God and being who you’re meant to be and putting priority there.

YOUR CHUBBY LITTLE GIRL, OTIS JOY, IS THE DEFINITION OF A BLESSING. HOW HAS HER LIFE IMPACTED YOURS? WHAT’S THE BIGGEST LESSON SHE’S TAUGHT YOU?

[Laughs] I love how you said chubby because she definitely is. This is a big one. [Having Otis] has given me a completely new perspective on life. It's not easy and it's not smooth at all. But I feel so lucky because my heart, my mind and my spirit get filled with such a healthy dose of perspective. If I'm weary, or angry, or hurt, she is an instant perspective switch for me. Even if she's the one that I need to take to therapy, or make sure she's eating well, or that she's going to the washroom. It makes me aware and gives me so much gratitude. It's come at a cost, for sure, but I'm so grateful for that. One of the other things she's taught me is in life is the mundane things, or the seemingly unimportant things become the best things. Even if we get a couple of extra snoozes in the morning and I get to look at her sleep— a little moment like that is so powerful. Or if she moves a finger, or she moves her mouth in a different way, and I'm like, ‘Oh my goodness, that's a new ability.’ You celebrate such small things.

WHAT’S SOMETHING YOU WISH PEOPLE KNEW MORE ABOUT IN REGARDS TO DISABILITIES AND THE EFFECT THEY HAVE NOT ONLY ON THE INDIVIDUAL BUT THE FAMILIES AS WELL?

People have a lot of fear approaching disability and people with disabilities, or they have preconceived notions or stigmas around it. It's this exact thing that eliminates the connection that everyone is worthy of. Not just the person with a disability that is worthy of that, but the person connecting with them. I love when people approach Otis like she's a normal, 20-month-old girl. Feel free to talk to her, [even though] she might not talk back, feel free to look at her, [even though] she might not look back. She's a bright girl, she's taking things in. She's just not responding how a typical person responds [which] doesn't mean she's any less valuable as a person and doesn't mean she has any less to give. She has a ton to offer and a ton to give. 

This is such an incredible, full life that [people are] missing out on if they have this filter on. I'm very passionate about people eliminating that stigma and having people accept her for who she is. My biggest aspiration is for any child to approach Otis and talk to her and to hold her hand or to tell them about their day or what toy they’ve got, and to learn her little unique ways of communicating— whether that's a little kick, sometimes she'll kick if she's responding. Or sometimes she'll turn her head around or dart her eyes where she knows there's motion and that's her making that connection. One of my greatest hopes for her is that people will accept her for the incredible girl she is.

WHAT’S SOMETHING YOU WISH YOU COULD GO BACK IN TIME AND TELL YOURSELF AROUND THE TIME OTIS WAS BORN?

If I was to tell my [past] self [something] it would be to not dwell so much on the things that were taken from you—keep pushing forward. I have no shame or fear in saying this— I am the most proud of myself for enduring what I did in the past. We went through 20 weeks of preparing for our child to pass away—that's what [my husband and I] were told. I went through labor delivery and became a new mom with absolutely zero preparation. There's a lot of grief in this parenting because so much has been taken away that should have never been, but it was.

I walked into [motherhood] with so much awareness and advocacy for our family knowing that it wouldn't be easy. Knowing that she wasn't a healed whole person, knowing that there were complexities [for her] being born, but [I made] the right decisions and advocated for us.

LOOKING INTO THE FUTURE HOW DO YOU HOPE SOCIETY WILL HAVE CHANGED TO BE MORE ACCEPTING OF AND EMPOWERING THOSE WITH DISABILITIES TO HAVE THE SUPPORT AND ACCESS TO LIVE THEIR BEST LIVES?

The most frustrating thing every person living with disabilities or a parent will tell you is the extreme amount of costs involved for basic living. [When Otis was] 16-months old, I calculated the equipment costs, [which was] almost $20,000—and that's without therapies. I don't even want to know how much therapies costs per week, over the amount of time, because it's a very large amount. That being said, we do get coverage and funding, and I'm grateful that we don’t have to pay out of pocket for a $10,000 wheelchair. There's funding for some things, which I have a lot of gratitude for. However, companies dramatically increase prices on pieces of equipment when the label ‘special needs’ is associated with it It's disturbing because it's basic living. 

We thankfully have an incredible team of therapists who advocate alongside us and help us navigate the system. But it's unfair because this is another element of basic thriving that she needs. There needs to be a change of structure when it comes to that because if you think of a low-income family or a single income household, it becomes this insane amount of stress and anxiety because if you can't pay for these things, the development of the child depends on certain elements and it becomes a very tough scenario and situation. I'm so grateful that we're in a position where we can support Otis in a lot of ways. But for those families who can't, it's very frustrating that they can't get basic necessities. 

WHEN DO YOU FEEL THE MOST EMPOWERED?

I feel most empowered when I'm the most self-aware of who I am and of the situation I’m in. If I can peel back layers and layers and layers and become introspective and understanding, that's the truest [version] of who I am. I feel the most connected to God that way, and I feel most connected to other people because there are so many layers stripped off when I’m the most self-aware and mindful.

WHICH PHYSICAL ATTRIBUTES DO YOU LOVE THE MOST ABOUT YOURSELF?

The physical attributes I have always loved about myself are having blue eyes and brown hair because I feel like a Gilmore girl, and that makes me happy. Even though I’ve been blonde for a little bit, although my pandemic hair is not blonde anymore. I've [also] always loved being petite. That being said, I've been learning to love the wobbly bits or the uneven bits of me that I've always had. Now that I've carried Otis and emotionally and mentally what I've been through, [I try to find] joy and contentment in my physical self. Even though [my body] doesn't look as cute as she did in her 20s. I appreciate what she's done for me, and therefore what she looks like.

WHICH PERSONALITY TRAITS DO YOU LOVE THE MOST ABOUT YOURSELF?

I'm a very open-minded person. I'm extremely easygoing. What I've learned about myself this past year is that I'm a very optimistic person too and good at using the power of my mind to see things with such light. [That’s also mixed with] a healthy dose of reality because things are hard, and you need to acknowledge emotion, guilt and grief. But I've been learning how to use my mind [in a positive way.] The power of the mind, it’s an incredible thing.

ANYTHING ELSE YOU WANT TO SHARE WITH US?

I would be amiss to not shout out every single parent parenting a special needs child or a person living with a disability. Take a moment to applaud them, commend them, give them praise, encourage them, they are doing an incredible job under incredibly hard circumstances. Not just a global pandemic, but the situation they’re in as it is— they deserve so much credit. They deserve to be seen, cared for and loved. Every every ounce of me wants to be able to do whatever I can for those parents and those living with a disability. Shout out to all those moms and dads and people. You're doing incredible. You deserve the praise and love.

This interview has been edited and condensed for clarity from audio to text.

Missy is wearing the Carter Bra and Carter Brief in Black and Everette Pant in Sky Blue. Images by Alex White.