A family’s Down Syndrome journey, celebrating everyday moments, and embracing the unknown
In honor of World Down Syndrome Day, GoBe Kids is delighted to share an exclusive interview with Nikki Geib of @MakingMillieStones for this month’s GoBe Mom Highlight. Nikki is a loving wife and devoted mom to two beautiful daughters, Georgi and Millie. After learning of her youngest’s Down Syndrome diagnosis, Nikki dedicated her Instagram to sharing her family’s Down Syndrome journey and what she and her family have learned along the way. Nikki’s story inspires families daily and seeing the bond her daughters share is pure cuteness overload. Keep reading to get to know Nikki and learn more about her family’s incredible story!
A little over 2 and a half years ago, Nikki and her husband were thrilled to learn that they were pregnant with their second baby. Although they initially decided to not find out the gender early with their second baby, Nikki and her husband decided to move forward with genetic testing when their doctors explained it as being part of the standard routine. Looking back, Nikki admits that she should have asked more questions surrounding the genetic testing because as soon as they received the results, they ended up facing so much uncertainty. Reflecting on that time, Nikki shared:
“I go back and forth a lot on whether or not I would have done that genetic testing. It led to a very dark time and very difficult pregnancy. We could have done the amniocentesis but that test comes with risks. I wish we could have accepted our baby for exactly who she was when she was in my tummy and celebrated her as she came into the world.”
Nikki still remembers the complex wave of emotions that accompanied the test results showing that the baby tested “positive for Trisomy 21”. She recalls going to Google to learn what the test result meant and the overwhelming combination of pain, fear, and shock that overtook her once she read the words “Down Syndrome”. After some time, Nikki connected with her doctor and learned that the test results indicated that there was a 68% chance her baby would have Down Syndrome and a 32% chance that the baby would not. Although they faced uncertainty and a lot of questions, Nikki and her husband moved forward with fear—but also hope.
“For the rest of the pregnancy, I had appointment after appointment (all on my own because of COVID-19 restrictions) and we learned some health scares about the baby but still hung on to the hope the baby didn't have Down Syndrome. We didn't know much about Down Syndrome at all but ‘knew’ it was bad from a lot of false and preconceived notions.”
The day finally came when their beautiful girl, Millie, decided to make her debut and confirmed her Down Syndrome diagnosis. After 22 days in the NICU, Nikki and her husband brought Millie home to meet her older sister. In the days that followed, they gradually started to realize how wrong they were to be scared of Down Syndrome. Moreover, although Nikki hid a lot of what was going on during her pregnancy from others, she also started to realize that sharing more about Millie’s diagnosis became a therapeutic outlet for her—and a source of inspiration and comfort for others.
“Down Syndrome wasn’t scary and it wasn't a bad thing… it was just different but different in so many wonderful ways. I felt compelled to start sharing our story through Instagram to hopefully help other pregnant moms who may be as scared as I was when I was in their shoes. After I started receiving uplifting, encouraging messages from people all over the world and then messages from those pregnant women I hoped to reach, I couldn’t stop. We have been sharing our lives ever since.”
Celebrating Everyday Wins & Her “Mom Tribe”
In terms of everyday life, Nikki is grateful for the opportunity to stay at home with her girls. Her 4 year old, Georgi, goes to school each morning while she takes Millie to music and physical therapy appointments a couple times a week or they enjoy errands and trips to the grocery store. Nikki then has lunch with her girls once Georgi is home from school before she gets to spend one-on-one time with Georgi during Millie’s afternoon nap. Evenings though are extra special. Once Nikki’s husband is home from work, the entire family goes on bike rides, sledding, hiking, and all of the adventures you can think of!
When it comes to preparing for a successful week, Nikki humbly and graciously shared that she is still learning and discovering new ways to do this. However, Nikki shared that making sure the house is fully stocked with delicious eats and going over all upcoming activities is integral to a smooth-sailing week:
“I make sure we have a lot of fruit and small munchies which have been perfect to use in our GoBe Snack Spinner. My oldest brings her Snack Spinner to school every day and loves the variety of snacks she is able to choose from! It is also handy to have one ready to grab when we are on the go! The other thing we usually do on Sunday nights at dinner is talk about the week ahead as a family. It's helpful to go through all of the upcoming activities, [therapy and doctor appointments], classes, etc. so we are all on the same page.”
All parents have their “must-have” products whether it’s in their parent bag or at home. Nikki was happy to share the items she’s found to be the most helpful in fulfilling her family’s needs:
On the go:
- GoBe Kids Snack Spinner
- Present Not Perfect Calm Kits
- Mondo Llama Arts & Crafts Kits
- Small books
- Thin blanket
- Once Upon A Farm pouches
- Tushbaby carrier
- The Upseat 3-in-1 Ergonomic Baby Seat
- The Nugget
- The Abiie high chair
- The Hatch sound machine
- Veggies Made Great muffins
- The Yoto player
- A Pikler triangle
- FridaBaby NoseFrida
- The Bumbo changing pad
- Nested Bean Zen sleep sack
As an inspiration to moms and parents through social media channels, Nikki shared that she is especially grateful for the “mom tribe” she has in her local community. They all had their first babies around the same time and Nikki credits the support they all provided one another and being able to lean on fellow new moms as an invaluable comfort. Moreover, the sense of camaraderie and friendship grew along with the size of their respective families.
“…And when I had Millie, I was able to connect [through Instagram] with another community of other moms who have children with disabilities. Being able to validate each others' feelings, bounce ideas off of one another, gain valuable advice, and get the most amazing encouragement has given me so much strength as I raise Millie.”
Quality Time For Your Family & You
At GoBe, we wholeheartedly believe in celebrating how every family is beautiful because every family (and their journey) is unique. When Nikki learned of Millie’s diagnosis, she admitted that she was worried about the impact it could have on her eldest and how her daughters would bond.
“I never expected my daughters to be so close..They have the most beautiful bond I have ever witnessed. I hope other parents remember that children only love, they do not see differences like we do, and their hearts are so pure and so big.”
Nikki reiterated that she prioritizes spending quality time both as a family and with each of her daughters individually─even if it meant tag teaming with her husband on separate trips. Most recently, her husband took Georgi skiing and Nikki went with Millie for a sunny beach vacation. Both Nikki and her husband got a chance to create new memories with their daughters and the one-on-one moments felt incredibly special. When it comes to quality time, Nikki also emphasized the importance of dedicating time to your partner as well.
“My husband and I have had some conversations recently and have both realized we haven’t spent much quality time with just each other since Millie was born. This year we are working to prioritize that by finding a babysitter even if it's just once a month so we can get away on date nights and have that time just the two of us.”
Quality time is also not solely reserved for family time. Giving back to yourself is just as integral and Nikki shared that this is an area she makes a conscious effort to work on. Not every day will be easy and Nikki admits that it’s hard for her to realize when she needs a helping hand. In light of this revelation, she encourages all parents to ask for help on hard days or during difficult or trying moments because giving yourself a chance to reset is the best way to be there for everyone else.
“Find ways for self care─whether that’s taking a bath, a walk, getting your nails done, going shopping, treating yourself for a fancy coffee, reading a book, or just sitting alone in a car….Even if it's just getting 20 minutes outside for a walk or a shower alone, [it] helps a lot. If no one is around to offer help, I use the TV and snack time for a little space and refresh. Sometimes that is necessary for everyone.”
The Beautiful Unknown
When it comes to family and raising children, it may sound tempting to have everything planned out to a tee and not have to worry about any uncertainty that can come your way. Reflecting back on her own journey, Nikki wants to encourage parents─regardless of what stage of parenthood they are in─to lean into the unknown, especially when it comes to a child’s diagnosis.
“A diagnosis for your child may be an unexpected shock and a lot of emotions may come with it, but know that every emotion you feel is valid and that although life may look a little different than what you imagined, it is NOT over, it is just beginning.
One thing I have learned over the last couple of years is that fearing the future does absolutely nothing but create unneeded anxiety. The future comes with so many unknowns and nothing is ever as big as it seems so although it's hard to do at times, I try my best to live in the present moment and when I do, I have a lot less fear and a lot more happiness.”
Thank you so much, Nikki, for sharing your story with us. We’re grateful for the opportunity to get to know both you and your gorgeous family.
It is stories like Nikki’s that inspire all of us at GoBe Kids to keep designing products that will positively support families and their uniquely beautiful journeys. We’re humbled that we get a front-row seat to seeing all of your families thrive when you welcome our products into your lives. We’re here to cheer each of our wonderful GoBe parents on and we’re so excited to be part of this journey with you. Keep up the great work and join us in embracing the glorious unknown of the next chapter in your story!
- Alissa, from the GoBe Team