Can you briefly say who you are and what you do?
My name is Elena Fong, native Bay Area resident and am the mother of two very special babies, my daughter Wynter and my son Nova. I am the wife of my wonderful husband Will, and I work at Hawthorn, a local brick & mortar where we carry ethically made clothing & accessories for women here in Oakland. And just recently left my partnership/business autumn + bower selling vintage clothing. I am also an advocate for Down syndrome and postpartum awareness.
We were so moved by your words about spreading awareness about Down syndrome. Can you please share your story?
Oh wow, for me it’s hard to put into words (and to keep it brief) what I experienced and my journey to becoming Wynter’s mama, for me there are so many variables and layers, but I will do my best! My husband and I had been trying to conceive for about 3 years and went through 2 miscarriages before we finally decided to do IVF. I was 37, and knew that this may be our one and only chance to have a child of our own. After going through the waiting game, and rollercoaster ride of emotions of the IVF process, and almost losing every single one of our 4 embryos, we were left with our one and only embryo (that almost didn’t make it either). It was biopsied to test for any chromosomal “abnormalities”, and when we got the results back, it came back as “no results”. We were confused by this, but were told this could happen, and that there was no way of knowing what it really meant. It could mean the biopsy was too small to be tested, or it could mean there was some sort of abnormality. So we were left with the decision of whether to implant or not. It was suggested we do another round of IVF, but we could only afford to do it once, so this was it for us. Knowing our little embryo had fought so hard, we inevitably knew we would proceed and have it implanted. Then it was the waiting game again to see if it was successful, and that I was pregnant!
After 2 weeks, I had to go in for my pregnancy test on Christmas morning of all days! I totally thought it hadn’t worked, because I didn’t experience any of the typical pregnancy symptoms. But when the nurse called and told us I was indeed pregnant, we were ecstatic! I had prenantal testing done, as I just assumed it was something you automatically did when you were pregnant and I waited for the results. And I will never forget this day, when I received the results I was at work and stepped into the office to take the call and the lady on the other end said, “I’m so sorry, but your test results came back positive for Down syndrome.” I was devasted. Heart broken. I immediately started crying and felt the joy of finally becoming a mother sucked away from me. I literally mourned for my baby before she was even born?! I still struggle with that feeling. I truly wish I hadn’t felt that way, but at the time, I knew nothing about Down syndrome.
In the meantime I did do further testing that confirmed my Ds diagnosis, and I went to many, many doctors appts, one being the cardiologist. I was also faced with the decision of whether to terminate or continue with my pregnancy. Not to mention how many times I was reminded, “You still have time to terminate!” It was gut-wrenching. How could I terminate? After seeing my baby’s sonogram photos? Her tiny hands and feet? Feeling her move? Seeing her heart beat?! I couldn’t. We couldn’t. She fought so hard to be here and we weren’t giving up on her. We were continuing with our pregnancy, and we were going to learn as much as we could about Down syndrome. I didn’t want to just know what the doctors, geneticists, and specialists had to say. I wanted to know what it truly meant to have a child with Down syndrome. So I reached out to parents of children with Ds, and you know what? It was the best thing I could’ve ever done. Because it gave me a glimpse into their day to day lives. And it was truly touching, inspiring, but most importantly it pretty much looked like every other family with children! And that to me was all I needed.
I would be lying if I said I never worried about Wynter, and how she would be perceived and treated. Or that I didn’t question whether or not she would be able to do certain things, and if she would reach certain developmental milestones. But in her very short time on this earth she (and her therapists) have worked hard, and she has met every single challenge presented to her. She has taught me and my husband so much, and we will continue to learn from her. We’re letting Wynter lead the way. She is our greatest teacher and she has shown us that she will be ok.
If you could tell people one message about Ds or snap your fingers and change a perception, what would it be?
Oh there are so many things, but…that it’s not something to be scared of. It does not define your child, it is something your child has, it’s not who he/she is! I 100% believe in a woman’s right to choose, but I want women to make their choices based on correct information, not because they are scared. There is a spectrum when it comes to Down syndrome, and people with Ds are living very long and happy lives. Yes there will be delays, yes there will be many, many therapies, and yes there is a possibility that you may face some sort of health concern. About 50% of children with Ds have some sort of heart defect. Wynter is apart of that 50%, but it’s not severe and she is very healthy. I want people to know (especially parents-to-be) that having a child with Ds is not a burden. It can be hard, and of course challenging (but isn’t that true for parents with typically developing children?), but what you have to gain is so much greater! Having a child with Down syndrome will open up a whole new beautiful world to you, and if you’re lucky enough, a love that you never knew you were missing.
What is your definition of beautiful?
Strength. Seeing someone at their lowest of lows, and able to not just overcome their challenges in life, but to kill it!
What is the most rewarding thing you have ever done?
Haha! Well that’s an easy one. Becoming a mother.