Happy World Down Syndrome Day! March 21st is the day where people all over the world are raising awareness of Down Syndrome and joining in one single global voice for advocating for the rights, inclusion, and well being of people with Down syndrome.
In celebration of World Down Syndrome Day, we wanted to introduce you to a local Raleigh mama of three and advocate for families with differently-abled children. We are so lucky to have Rachel Fox here on the blog sharing with us about her life as a Raleigh mom, her personal and inspirational journey with her beautiful daughter Eva who has Down Syndrome and her favorite resources that all families will find beneficial.
Please read along to all the great information Rachel is sharing with us. In addition, follow along on our Instagram where Rachel will be taking over for the day and giving us an inside look into her #momlife in addition to sharing her tips, places to play with the kids and lots more!
RMB’s Interview with Rachel Fox
RMB: Tell us about yourself and your family, especially your daughter who has Down Syndrome which you are now an advocate for?
Rachel: My husband and I are from Rochester, NY but have lived in the Triangle for the last 6 years. I work from home as the Ad director of Babiekins Magazine, Business manager for Wolfandfriends.com ( an online platform for special needs families), and as a freelance product photographer and stylist. My husband also works from home as an Engineer for an Audio/Visual company. We have three beautiful children with BIG personalities, two of them born here in NC. Our first born is our Eva. After a healthy, normal pregnancy with many “normal” ultrasounds, Eva was born in May 2012. She was so beautiful and healthy. It wasn’t until Eva was 4 weeks old that it was confirmed that Eva had Trisomy 21, also known as Down Syndrome. Down Syndrome is typically not hereditary, and my chances of having a child with Down Syndrome at the age of 27, was 1 in 3,000. Every 1 in 700 babies is born with Down Syndrome which isn’t that rare if you think about it.
We truly feel LUCKY to have been given such a gift, Eva. Eva makes our life more colorful, brighter, happier and her smile will warm any heart. Life is better with Eva.
On the second or third day after having Eva, a medical team entered my hospital room. They explained to us that Eva might have Down Syndrome. The indication, a large separation between her big toe and the rest of her toes (also known as sandal gap ) and possibly, her almond-shaped eyes. Pre-natal screenings for Down Syndrome was negative and we had no other indications through pre-natal ultrasounds. After they left the room, we cried. We just really didn’t know how to handle the news that was just given to us. Already emotionally and physically drained from having a baby, we just couldn’t digest the thought that our perfect and beautiful baby girl could be “atypical” or even “developmentally challenged.” My husband and I talked all day and night riding all sorts of emotions and then suddenly something had come over us. What if she didn’t have Down Syndrome? Then she wouldn’t be special? Wouldn’t she be unique? She would just be “normal?” What is normal anyway?
Those feelings of fear and doubt were quickly replaced with overwhelming excitement. We were truly given such an amazing child. We felt incredibly blessed to have been chosen to be the parents of such a special baby! I think we came to the realization that we would be disappointed if she didn’t have Down Syndrome. My husband also had confessed that he had a dream to work with differently-abled adults at one point in his life, which he had never shared with me before. There are families like us that are elated from the beginning, but more often there are many families that struggle with this news. I think a lot of that struggle, denial, and depression is the fear of the unknown. If you don’t come from a medical background, a teaching/special needs background, or personally know or have had an experience with a differently-abled person or person with Down Syndrome, then you don’t know what to expect. And that can be kind of scary. From the moment it was confirmed that Eva had Trisomy 21, we knew we were taking on more than just the role of parents. We were to be Eva’s advocates and to help others better understand those that are born with different ABILITIES.
I wish I could say that having a child with different-abilities is easy, there are challenges along the way, even at birth. When Eva was 6 months old, she had open heart surgery. 50% of children born with Trisomy 21 are also born with a congenital heart defect. Being in the hospital with her for that heart surgery was and has been the hardest thing we have ever gone through in our entire existence. That heart surgery was also an incredible blessing and we are so grateful for modern medicine. Eva has a fully-fixed and healthy heart now and it was a very necessary surgery for her to have. People in the healthcare profession make miracles happen, and I tell every new parent that has to see their child go through major surgery or chronic illness that your child really is in amazing hands.
When Eva was 2 1/2 months old, she started therapy sessions, and as she grew, we added developmental therapists and speech therapists. It can be a lot, but I promise every visit, every appointment is more than worth it because Eva IS WORTH IT!
She has attended inclusive preschool (which mean she is a classroom with typically developing peers and children with developmental differences) and has been dancing at a regular dance studio since she was 2.5 years old. She started Kindergarten this past Fall and is an amazing big sister to Elsie ( 4) and Ethan ( 1). Elsie is our second born and is a big extrovert. We really believe Elsie was born to be Eva’s support and lifelong friend. Ethan was our biggest surprise. He is sweet and laid back but also has a lot of personalities much like Eva and Elsie. I can imagine that he might be our family peacemaker someday. Our weeks are fully loaded with extracurricular activities, tutoring at Gigi’s Playhouse Raleigh, Pre-school/Kindergarten and occasional trips to the YMCA. We really like to do one major outing over the weekend, and spend the rest of the weekend lounging around the house together as a family.
RMB: How and why did you become an advocate for families with special needs children?
Rachel: When Eva was born, the hospital immediately bombarded us with outdated information about Down Syndrome. Looking back on it, the pamphlets they gave us were outdated statistics, outdated facts and the worst-case scenario for all medical issues associated with Down Syndrome. It is probably the worst thing you can ever give to a parent that has a child with Down Syndrome. What they did give us was information to the local Down Syndrome network. The best thing we ever did was connect with other parents in the Down Syndrome community right when Eva was born. We were introduced to the most talented and amazing children (that also happened to have Down Syndrome ) and their amazingly strong and confident parents. It was very quick to see that these children did not fit the description of the children with Down Syndrome in those pamphlets, in the medical journals and development guides. The children that we saw were more like other children than they were different. It was also clear that children with Down Syndrome all are different and develop differently. With that understanding, it became important for us to educate others about children and individuals with Down Syndrome and to help break down the stereotypes and labels that are associated with Down Syndrome. More importantly, help others to see that our children are very capable of doing many things.
In fact, children with DS are capable of learning and developing just as your “typically” developing child , it just may be at a slower pace. But they will get there!
RMB: What do you want people and families to know about kids with different abilities or Down Syndrome?
Rachel: As I mentioned above, children with Down Syndrome can vary with their developmental strengths and weakness. They may be developing at a slower pace in some areas but can be right with their peer group in other things.
Every child with Down Syndrome is different. 10% of children with Down Syndrome may also have Autism. The best way to better understand a child with a different-ability or to have your own child understand a child with a different -ability is to GET TO KNOW US.
I have gotten into the habit of introducing myself and Eva in a new social setting right away by telling them that Eva is much like most 5 years olds. She goes to dance and kindergarten and likes princesses, art, and books. I also tell them and their children that it’s okay to talk to Eva like you would talk to any other 5 year old and that she understands you and what is going on, but she may not always respond to you with words. Communication is one of Eva’s weaknesses and communicating with Eva is a new experience for them. This is hard to explain to a small child. So my advice to other parents with” typically” developing children is to tell their children to just INCLUDE them. The more they share experiences and play together, the more they will learn to communicate and understand a differently-abled childlike Eva. The 4-7 age range is especially hard to try and teach different-abilities to children. Once in a while, I get a parent that will come up to me first to ask how they can get to know us better and I can’t tell you how amazing that feels! It is so refreshing! The special needs community needs more Mom’s that don’t have special needs children to be our support. I can tell you that there is no wrong way to just say HELLO. It is so easy for a special needs Mom and child to feel like we don’t fit in, and we just ask that you talk to us and include us. Most of the special needs parents I know are the funniest people I have ever met. When your perspectives have changed, we tend to see the humor in “all things” and don’t sweat the small stuff. Not bad qualities to have in a new friend!
RMB: Are there any local support resources for special needs families you’ve benefited from as a mom or that your family has benefited from?
Rachel: Being a parent of a child with Down Syndrome, we are very lucky to have a nationwide network (locally the Triangle Down Syndrome Network) and Gigi’s Playhouse Raleigh that keeps us updated with resources, local events for the special needs community and the support of all the members, parents and advocates. I have been told that there seems to be a lack of support in the area for special needs parents that have children with Autism, sensory issues, limb and physical differences, behavior issues, congenital and genetics disorders, developmental disorders and chronic illnesses. Here are a few resources that may be helpful :
- http://miracleleagueofthetriangle.com/ (We can’t wait to cheer on Eva and her teammates during their baseball season!)
RMB: Talk to us about your #momtribe? What keeps you connected to the women/moms in your life, what’s your support system here like?
Rachel: Our family is very supportive of us and Eva, but sadly they are outside of NC. I have met a lot of amazing moms through the Triangle Down Syndrome Network, Gigi’s Playhouse Raleigh, some local church-run support groups. I have actually met a lot of amazing people and friends through social media. That might seems strange, but Instagram has been a great way for me to connect to other mom’s out there in the area, especially special needs Moms and other creatives. I have also met a lot of really great friends here in the Triangle at kid-friendly places, the YMCA and Stroller Strides (https://midtownraleigh.fit4mom.com/)!!! Stroller Strides is a great place to meet Moms that also like to work out.
RMB: Where are your favorite places in Raleigh that your family likes to play and where you and your Hubs and friends can escape for a good bite to eat?
Rachel: My kids never get tired of Pullen Park! We also like Marbles Family Fun Night (they do one once a month for special needs families ), visits to Cameron Village, Cameron Village Library and of course the neighboring Goodberrys. My kids also really enjoy the JC Raulston Arboretum.
I will go with just about anyone for Sushi, but my husband and I really enjoy checking out new restaurants and events in downtown Raleigh. We really have a beautiful city!
We’re so excited to be able to share with you our interview with Rachel Fox. We hope you found this information helpful and will share this post with a friend or family member especially in celebration of World Down Syndrome Day.
Want to connect with Rachel? Hop on over to our Instagram page today because she is running our RMB Mom Insta-Takeover sharing all about her #momlife with our followers.
*All Photos Contributed by: Rachel Fox