Logan’s Story

As told by Leah, Logan’s Mom:

“Logan as I named him was born with a bilateral cleft lip and aneterior palate. Ear pits. Anal stenosis. Oh and a very rare condition called microphthalmia / anophthalmia. This is the medical term for the absence of one or both eyes. Both the globe (human eye) and the ocular tissue that are missing from the orbit. For us it was both. I’ll never forget the doctor telling me, your son has no eyes. He’s never going to see. He’s blind. I felt like someone stabbed me in the heart. I said take my eyes. Right there and then. When can we schedule a transplant? Sadly that wasn’t and isn’t an option. I didn’t know what to concentrate on first. The lip. The palate. The eyes. Where do I start? What does this mean? I was so scared. I felt like such a failure.  They didn’t know if he had a functioning brain. If he would walk. If he would talk. If he could ever feed himself. If he would even survive. Does he have a syndrome? What’s life expectancy and quality with Syndrome A or Syndrome B, if he even has either of them. I was afraid to ask the doctors any questions because each question would have an answer. And for now all I was getting were answers that I didn’t want and couldn’t believe. This can’t be my new reality. Every decision was solely on my shoulders. What if I made the wrong one?”

“One of the first people I met was Shelley Cohen from The Craniofacial and Reconstructive Surgical Team at NYU. Patiently teaching a first time mom how to feed her newborn. This was so far from the experience I imagined. I was there going through the motions, but I wasn’t present. Explaining our treatment options and the steps we were to take with something called a nasoalveolar molding, something that would expand the tissue in preparation for Logans cleft lip and plate repair. Kind of like an orthodontic retainer that would also improve the shape of his nose. That molding dictated our lives for the next seven months. Weekly appointments to alter the molding as Logans tissue was evolving. Seven plus hours in surgery, But the outcome was nothing short of perfection. I did initially miss his cleft face as it was the only Logan I knew. It was almost like I had a new baby now with a completely different face. I’m forever grateful to the entire team for the care and compassion they have and continue to show us. For holding my hand and making sure I didn’t pass out  while watching him scream as he was having his stitches removed. How unfair I thought it all was. Other babies are out for a stroll or on the swings while he’s in therapy or in the hospital. I do not even notice his scars anymore but I don’t think I really ever did. Others do. Extensive dental work both past and future are still on the agenda. Possible future surgeries depending on how his bone grows and changes. And can’t forget the mandated daily speech therapy that I have to fight so hard to obtain for him.”

“Amid all the hardships, setbacks, observations, evaluations, doctors appointments, therapies and bullying that we, and I say we, because it probably hurts me more than Logan, we discovered that he has a great musical ability. We’ve learned that “Where words fail, music speaks” a quote by Hans Christian Andersen, couldn’t be truer for Logan. He’s been playing piano since he was two but we recognized his love for music almost immediately. A classical pianist dabbling in the world of today’s more trendy pop songs if you will. He takes requests. Everything is taken on as the challenge that it is. He’s just like the other kids his age walking down the hall, but with such strength and resilience that others simply can’t fathom. Myself included. Always smiling with that beautiful smile that wasn’t naturally even  meant for him. You would never know what he endured. With all that said, we’re actually one of the lucky ones. I’ve met a lot of kids and a lot of families and all I can say is thank you for giving me Logan. My best explanation of Logan is that he’s my greatest joy, my deepest pain and every emotion in between. I know he’s destined for greatness and the world will one day know his name. I’ve often read that Some people never get to meet their superhero, I gave birth to mine. And that’s the truth!!”

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