(NEW YORK) — A Pennsylvania mom is raising awareness and celebrating limb differences one year after her daughter, who also has a limb difference, was born.
Nicole Edwards posted a TikTok video on Oct. 7 of what she would have told herself and other parents facing what she and her husband, Bryan Edwards, experienced last year when she first found out her daughter Sage had amniotic band syndrome, a rare condition where a band in the amniotic sac of the fetus constricts or even amputates an area of the body, according to the National Institutes of Health.
“My main goal was to show them, ‘Hey, it’s going to be OK. Your child’s going to be happy and you just need to be there to support them and love them,"” Edwards told ABC News’ Good Morning America. “You’re allowed to be angry, you’re allowed to be sad, doesn’t make you less of a mother or a father.”
Edwards said she still remembers the mix of emotions she felt when she first learned of Sage’s unilateral limb difference, which affects her right arm.
“I just had all these emotions going all over me. So besides sadness, [there] was anger. I was really confused and really worried about her future,” Edwards said.
But since then, Edwards said she’s been on a mission to educate herself on something she once knew nothing about and wants to continue to shine a light on limb differences online, where she’s found a supportive community through organizations such as Lucky Fin Project and other content creator moms, including Beth Liepholtz of @beth_and_coop and the Wonderfully Me Society.
“I made it my goal and my journey in life to educate others and also help parents that may not be educated on limb differences either and are going through what my husband and I went through last year,” the 32-year-old mom said.
Edwards has had time to reflect after marking Sage’s first birthday on Oct. 3 and notes that the learning process will be lifelong.
“Her first year of life has been a lot of ups and downs, a lot of learning as we go,” she said. “I can tell when she looks at her hand and she just gets frustrated, [that] her left hand, the one that she does have, that it doesn’t look the same as her right. … I’m sure as the years go by, there’s going to be more and more questions that I will just answer with grace and be there and be honest and open with her because I would want that for myself as a person.”
For other parents and caregivers of children with limb differences, Edwards’ message to them is “to never limit them.”
“Don’t feel nervous about letting go,” she said. “It’s very hard not to be a helicopter parent but the best thing you can do is just let them go, watch from afar and if they need you, they will let you know. And be sad, be angry, you can be happy at the same time. Your feelings are so valid and it will be OK. You’re doing great.”
As for Sage, Edwards said she wants her “best friend” to know she is loved.
“You are the most amazing person I’ve ever met in my life. Don’t tell Daddy because he’s amazing too. You are so able, and I love you more than anything,” the mom said. “I’m so proud of the person that you have become over this year. I love watching you grow. You’re my best friend in the whole world. And mommy will always be here. No matter what. I am your home and you’re mine.”
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