Connecting the EA/TEF Community: Indie’s Story
Connecting the EA/TEF Community is one of the goals of EA/TEF Awareness Month. Doing so is the passion of Liz Eidelman, our first 2021 guest blogger. I’m delighted to introduce readers to her and to her delightfully adorable daughter, Indie.
I am so happy to be sharing Indie’s story in honor of EA/TEF Awareness Month. After a relatively uncomplicated pregnancy, our daughter was born on March 1st 2019 and immediately we knew something wasn’t right. It was a swift diagnosis and a whirlwind few days where we eagerly awaited her repair surgery and our ‘marching orders’ for moving forward. As first time parents, my husband Stephen and I were naturally terrified. I didn’t know what to expect for her future, and to a certain extent, I still feel that way sometimes. Indie stayed in the NICU for three weeks and was readmitted to the hospital two weeks later due to scar tissue causing a stricture at the repair site in her esophagus. This was a low point for us, without a doubt. The fear of the unknown was at an all-time high, wondering if constant trips to the hospital was our new normal… desperate to find answers and information about this rare condition that we hadn’t heard of. It was now occupying all of our lives.
My mother sent me an article about a little girl whose EA/TEF was being monitored by a specialized clinic at Columbia NY Presbyterian Hospital, right in our neck of the woods. This was the first child I had ever seen on the internet who was thriving despite her condition. My desire to connect with literally anyone who could relate had me throwing all caution to the wind and before I knew it, I had found this girl’s mom on Facebook and boldly sent her a message. When she responded, I broke down in tears. This was my first friend in the EA/TEF community. I’ll never forget the day we finally met her in person.
Fast forward to 7 months old. A laryngeal cleft was diagnosed, adding to the complexity of Indie’s EA/TEF. In the interim, we had joined the clinic in New York and I was actively using my blog’s platform and the power of social media to connect with many other EA/TEF families. In nearly two years of Indie’s life, I’ve come to realize that the first thing parents do after their child receives a diagnosis is to start googling… and apparently one of the first articles to come up is Indie’s birth story on my blog. You have no idea how many messages I have gotten from the NICU. Upwards of 50 moms and dads have reached out to me blindly, the same way that I had done mere months before. Suddenly I was connecting the EA/TEF community in ways I hadn’t anticipated.
Having these connections has made Indie’s journey an easier one for me as a new mom. Whether in the flesh or online-only, the friends we’ve made who share this unique bond have brought so much joy to our lives. We feel so blessed to know that Indie is thriving.
Navigating the complexities of her anatomic differences has been much easier than I thought it would be a few weeks after leaving the NICU. If you are raising a child with special needs, I cannot stress enough the importance of finding a friend or two (or fifty!) in the same boat, even if it means you need to initiate the conversation and hope for the best – because in the end, I can assure you it will be worth your while. Watching these children grow and conquer is nothing short of amazing… and connecting the EA/TEF community is something I will continue to strive for – because a tight and vocal community will ultimately lead to more answers and solutions for these miraculous people.
“I get by with a little help from my friends.” – Joe Cocker
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By Liz Eidelman
Liz Eidelman is a life + style blogger from New Jersey, who’s social media presence focuses on fun, affordable fashion and the experiences that go along with the outfits. After giving birth to a daughter with special needs, Liz has made an effort to use her digital voice to spread awareness to her daughter’s condition. Completing Liz’s family is her husband Stephen, and two dogs Percy and Zoey. Liz has appeared on the Rachael Ray Show as a Maternity Style Expert, and was previously a theatre actress performing in professional musicals around the country. Follow her @lizeidelman on instagram, or by subscribing to her blog, www.lizeidelman.com.
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