One of the beautiful things about parenting are the big impacts that our tiny humans have on our life. For Sarita Edwards, her youngest child changed the course of her career and passions, inspiring her to create a 501c3 nonprofit to benefit other children that face similar struggles to what her son faces with a diagnosis of Edwards Syndrome.
Read below to find out more about Sarita’s journey as a healthcare advocate and why we think she’s an Awesome Mom of Huntsville!
My passions are healthcare advocacy and education. It is so important (to me) that everyone has access to quality healthcare; regardless of medical diagnosis. Being the mom of a child with a terminal, rare illness, medically termed “incompatible with life”, I know firsthand how difficult it is for patients with rare diagnoses to access quality healthcare. To help facilitate resources for rare families, my husband (‘The Hub’) Kareem and I founded a 501c3 nonprofit healthcare advocacy organization, The E.WE Foundation; specifically for infants & children with Edwards Syndrome. I currently handle the day-to-day operations of the organization.
The concept of healthcare advocacy starts with bringing awareness to illness. My goal is to change the medical perspective through efforts of advocacy, education, and public policy. Equally important is education. I am very passionate about creating opportunities for my children, for all children, to be the best version of themselves. I enjoy community outreach initiatives and efforts that support the enrichment of children and student education. I currently serve on multiple boards and committees, working with organizations across the state, to ensure every child (and adult) has a voice. Advocacy efforts start with educating yourself, collaborating with other individuals and organizations, then collectively sharing that knowledge with your community.
Sarita’s Motherhood Journey (So far!)
My journey to motherhood started 22 years ago with our eldest child, who is now a college graduate. The Hub was totally fine with one child; I wanted (at least) one more. The Big Boy (as I call him) rode solo as an only child for seven years; and then the floodgates opened. We had three more children in five years. Our daughter, the only girl, was born second to the eldest. Then we added two more boys. Shortly after our last child, we began our transition to Madison (2009). In 2016, we learned we were pregnant again. I have to be honest and say, I was not excited. I was satisfied with the four kids we had. After convincing myself it was okay to be “advanced-aged and pregnant”, I embraced being pregnant with child number 5.
Around 22 weeks, we learned that our unborn child showed signs of a chromosome abnormality. We were told to expect death shortly after delivery, if not any day prior to. Every doctor’s visit was like pouring salt into a wound. We went from monthly visits, to bi-weekly visits, to weekly visits to a Maternal-Fetal specialist 2 hours away. I hated them all. I had experienced miscarriage before so I “knew” those scars; but this conversation was different. I was planning a funeral for a baby not yet born. It was a hard time for all of us. The little guy, another boy, was born in 2017 with Full Trisomy 18 (Edwards Syndrome). He’s now 4 years old.
This experience changed my perception and perspective of motherhood, and our healthcare system. I have a heightened level of respect for all moms. The battles we fight for our children are unparalleled. Now with five children, one with several medical complexities, I better recognize and appreciate the strength I’ve been endowed but also the vulnerability I’ve learned to embrace.
Her Quest for Balance
My approach to work/home/life balance is to go with the flow. I have learned to accept that regardless of what’s on my calendar; “the day” may have different plans for me. As the CEO of our nonprofit organization, I work from home and have the flexibility of my availability. I usually start the day with coffee, my calendar, and emails. I usually end the day the same.
A key component to “our balance” is communication. Most of my community involvement welcomes my bringing along the little guy. If I foresee it being an issue; I make sure to ask ahead of time. For events, special projects, or tasks requiring my immediate attention, I coordinate my needs with The Hub’s calendar; especially if I need him to make modifications to care for the kids. I have learned that every “ask” doesn’t require my yes. It’s okay to say no.
The Edwards’ house is by no means a well-oiled machine. We have many of the same challenges as every other household. One thing that works is giving others “their space” to help out. I like things done a certain way and I was really bad about critiquing others’ efforts. I realized that this only contributed to their disinterest. They would drag around or grudgingly help. Now, I let everyone have “their way” as long as the task gets done properly. I let our daughter cook dinner some evenings. One of the boys takes out the trash. Everyone washes dishes or loads the dishwasher. Laundry only happens a few times per week and everyone cleans the bathrooms, dusts, and vacuums. It took me a long time to get to this point. Balance starts with understanding you don’t have to do it all; share the love.. and the load!
Her Rocket City Favorites
My perfect weekend is doing anything with my family – and no one is complaining about it. I enjoy being outside when the weather is nice! I love the Fall when the air is cool and crisp, and bug-less. Whether we do something or nothing, my perfect weekend ends with coffee and a really good movie!
Funniest Parenting Moment
My most recent, funniest parenting moment is when I pulled a 2-for-1 scare on the kids. My daughter decided to hide on the side of our bed while I was in the bathroom. As I step out, I hear “Mom!” in a really loud shout. I’ll admit, she startled me.
I decided it was time to get her back. I waited outside of the bathroom (for 20 minutes) while she showered and prepared for bed. Scare 1: One of the boys, being curious, jumps out of bed to see what’s happening. On his way back to his room, he sees me standing in the doorway, in the dark, and yells “Ahh!”. I laughed so hysterically I didn’t think I would be able to scare my daughter. Scare 2: I finally hear my daughter opening the bathroom door. I yell “Raa!”. She screamed, posed like a Heisman trophy, and said “Really Mom?”. The icing on the cake was having “The Hub” involved; he recorded the whole thing! Video footage available upon request (*inserts hysterical laughter*)
Sarita Shares Her Top Parenting Tips
I have two tips:
1. Be forgiving of yourself, of your children, and of others. You’re not going to get everything right. Neither will your children. Neither will other parents or their children. Keep an extension of grace available for yourself and for others. The mom with the temper-tantruming child (for example) needs your support, not your stares.
2. Let your kids see your fun side. You can have structure and a smile.
The Super Power She Wishes She Had
If I could have a super power it would be kindness. It’s something we all want but something we don’t always give. You can never have too much or enough of kindness.
Sarita’s Parenting Book Recommendation
As cliche’ as it may sound, the book that’s made the greatest impact on my life is the Bible. Every possible parent scenario can be found in the Bible. I trust it more than any other read.
Get your Gameface on – “The Greatest Show” or “This Is Me” from The Greatest Showman Soundtrack
Recover from heartbreak -“Oh My Soul” by Casting Crowns or “Maybe It’s Ok” by We Are Messengers
Energize yourself – “Gotta Live” by Tedashii ft. Jodan Feliz or “Revolutionary” by Josh Wilson
Let loose and have fun with your friends – “Love” by We Are Messengers or “Brother” by Need To Breathe
Do you know a local mom you think we should feature as an Amazing Rocket City Mom? We want to hear from you about her – send us your ideas and we’ll get in touch!
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Rocket City Mom is a website about raising children in and around Huntsville, Alabama. Started in late 2010 by a local mom and newcomer to Huntsville, Rocket City Mom has grown into a thriving community of local parents and now boasts a staff of four, thirteen regular contributors, and tens of thousands of Tennessee Valley readers making it the #1 Parenting Resource in North Alabama.