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Caroline Naif is mom to Briella and the founder of Briella and Me – a social media platform where she shares their journey living with Cerebral Palsy and PCD. The following is a bit of her journey and what she’s learned along the way.
An early beginning: Briella’s NICU journey
Briella entered the world by emergency C-section at 34 weeks. She was six weeks early, only weighing 3lbs 11 oz. I never thought this would happen to us and we were not prepared or educated about what to do with a preemie baby. This was Briella’s start to life: struggling through 24 long days in the NICU. Luckily for us, it was only 24 days and then we were able to take our baby home.
Not knowing what was happening, what questions to ask, and if everything was going to be okay, the getting by day by day lifestyle of the NICU was so hard. I remember breaking down to the NICU nurses asking if Briella was going to make it: the hardest question you could ever have to ask as a new mom. We couldn’t even hold our baby girl until she was two days old.
This wasn’t what I imagined giving birth would be. We had no plan for an early arrival. Even now, so many emotions arise when talking about when she was born and how she was rushed into this world. My placenta was failing and she was in distress. Her umbilical cord was wrapped around her neck twice.
We had no idea that her being premature could cause other issues down the road. We thought we might have beaten the odds… until we learned we hadn’t. Briella kept missing her milestones, even after accounting for her corrected premature age. We didn’t want to believe that she was so far behind. We just thought, “Oh, she was a preemie. She will catch up.” Her doctors kept saying to wait and see, but she didn’t catch up.
Then it was time to take further action. After multiple blood tests, basic genetic testing and two MRI’s we finally had our answers: Briella was diagnosed with PVL- Periventricular Leukomalacia/ Cerebral Palsy at 21 months.
Grieving, Growing, and Creating Community
My husband and I struggled with answers, community and wanting to know how we could best support our daughter living with a disability. The future of the unknown was very scary. We grieved the loss of what we thought life would be like, until we changed our mindset, educated ourselves and reached out to create our own community by starting @briellaandme Instagram/Facebook pages where we started to share Briella’s story and began building a community of amazing parents, caregivers and warriors.
I have learned so much these past almost eleven years about motherhood, advocacy, inclusion, acceptance and patience. Sharing Briella’s story has been one of the most rewarding and inspirational parts of my life. It’s a reminder to us all to never limit ourselves but to adapt and to find our community. Our goal is to educate and spread awareness to others who are going through similar situations of prematurity, Cerebral Palsy or rare disease and are navigating life raising a child with a disability.
Important takeaways from our early days
If I had one piece of advice that I wish someone had shared with me early on it would be to find your community! Don’t let doctors tell you to “wait and see.” Advocate hard, educate yourself on your child’s disability, stay organized. Don’t ask, tell what you need for your child, whether it’s more therapy, medical equipment, support, mental health resources, funding grant resources etc. Briella’s primary diagnosis is CP so we follow and connect with a lot of CP families, caregivers and adults with CP on Facebook/Instagram and through Facebook CP groups.
Our journey into adaptive fashion
When we started Briella’s Instagram/ Facebook page @briellaandme in 2018 and started to share her story, the doors really started to open. We shared a lot of photos and videos of Briella’s daily life, while tagging different brands in our posts. This built a lot of connections.
We’ve learned to be our authentic selves and to share the real, raw and emotional life of raising a child with a disability.
Fashion was my major in college and marketing was my minor, so when I had a child with a physical disability it naturally led into sharing adaptive fashion and how it truly changes lives for people with disabilities and fine motor challenges. Adaptive fashion has really come a long way over the last ten years, with many big brands now offering adaptive styles like Tommy Hilfiger Adaptive, Zappos Adaptive, Target, Kohls, Billy Footwear, StrideRite, Nike etc.
Navigating travel and accessibility
Accessibility and inclusion have been our biggest obstacles for Briella when we travel. Traveling by plane, or to another state, or even just our daily outings and everyday adventures to different cities/stores always require a lot of pre-planning. This is all the more true now that I have a second child who is almost three – Briella’s brother Brady.
Tips that make travel a little easier with CP:
Traveling with a child with a disability takes a lot of planning and extra hands. If you are able to bring your significant other or grandparents along for extra help, that’s always a bonus! Pre-planning and seeking out assistance at the airport through TSA cares/ wheelchair assistance is very helpful, too.
- Follow some great disability travel influencers. It goes a long way in helping with the planning. Some of our favorites are: @realchelseabear@wheeltheworld curbfreecorylee and @wonders_within_reach.
- Medical/Disability items fly free and so do many kids’ items! You can bring your car seats, booster seats, strollers and travel cribs without paying for extra luggage. It’s important to confirm this with your airline prior to traveling.
- Take photos/ videos of all your medical equipment prior to leaving and to make sure you register your medical devices with the airlines.
- Invest in a case or protective travel bag for your equipment (easily found on Amazon).
- If you can, bring all items to the gate to either gate check them or to bring them on board when allowed.
- You can request wheelchair assistance prior to your flight.
- TSA precheck can help speed things up for getting through security.
- TSA Cares is a great program for people with disabilities traveling. You need to call 72 hours prior to your flight to arrange. TSA Cares helps to get your loved one through security safely.
- If you’re nervous about flying with expensive medical equipment, consider driving, using your child’s old equipment, or finding used equipment on FB marketplace or through your city’s local equipment closets (often run by therapy centers).
- When you do check medical equipment, make sure the airline understands that’s what it is.
- We have the blue disability sticker on her walker bag and wheelchair bag in the hopes that the airline personnel will see it and be extra careful with it.
Travel days
Usually, when we fly, we bring Briella’s Convaid Ez- Rider foldable medical wheelchair/stroller. That’s how we get her from the car, through the airport and down to the gate. Then I transfer her into the aisle chair at the end of the gateway and fold her stroller to place it in the stroller bag for gate check. Next I help her to get to her seat with the aisle chair. We also bring her foldable purple Nimbo Walker. I place that in a travel bag and either curbside check it at the airport when we check-in, or carry it with us to the gate to gate-check it.
The past few times we’ve flown, we’ve brought Briella’s older model Nimbo walker and Convaid Ez Ride. I’ve been too scared to bring her new wheelchair on a flight. It doesn’t help that the chair doesn’t fold.
Typically, Briella stays in her chair throughout the security process. I walk through the security scanner and we are reunited on the other side. They swab my hands and swab Briella’s hands, parts of her wheelchair and her AFO’s. They run a quick chemical scan from the swab and then we’re back on our way.
Big Wins and Little Joys
Briella has done so many amazing things in her almost eleven years of life. A lot of this has been thanks to sharing her journey on social media. Through @briellandme we’ve had so many amazing opportunities for travel, modeling and growing her audience while raising awareness for disability inclusion, acceptance and visibility.
In 2018, she had her first big break modeling for Kohl’s and their new adaptive fashion lines for kids/adults. Briella was also a part of Stride Rite’s Project Fits Rite campaign for their new adaptive shoes. Since then, she has done numerous fashion shows and she even modeled last year for Zappos back to school campaign.
Briella and I took our first solo flight for that campaign. We flew to Las Vegas and I felt so empowered doing it solo. We’ve come a long way from the overwhelming days of the NICU.
Words of Wisdom for Fellow CP Parents
Finding your community/village is so important. You truly learn so many amazing things from other parents and caregivers and disabled adults with lived experiences who are going through similar situations as yours. These people understand all the nuances of therapies, equipment, traveling, school, etc.. It’s given me such peace of mind knowing we aren’t alone in this journey. At many times, disability life can be a very lonely journey: it’s nice to have a community who stands with you and supports you along the way. Whether you reach out by sharing your child’s story on social media, or become a part of a social media support group, or connect with local families in your community from school or therapy centers – community is an amazing way to learn about raising a child with a disability.
Also, know that it doesn’t hurt to ask! Don’t be afraid to speak up or to not take no for an answer. Raising a child with a disability takes thick skin but you’ve got this!
