Facing hard times with determination and a smile
My son Levi was born on May 8, 2017. The first few hours after birth, something didn’t seem right. He cried nearly the entire time and wouldn’t nurse. A lactation consultant discovered Levi’s cleft palate, but I didn’t have a lot of information on how to care for him. It was a stressful, overwhelming and frustrating beginning to his life. He spent his first few weeks crying all day and night.
A month after Levi’s birth, I was referred to the Advocate Children’s Hospital Cleft Palate & Craniofacial Clinic. As soon as they realized how many weeks had gone by and how little help I’d received, they connected me with Anna, a speech therapist. After asking me a few simple questions, she immediately recognized Levi was malnourished and suggested a few changes to get me through until our appointment the very next day. I hung up the phone and cried – an incredible weight had been lifted.
Our first clinic appointment was overwhelming, but in a good way. We met with Anna, a geneticist, cleft surgeon and otolaryngologist. Before each clinician left the room, they assured me of the same thing: “It’s going to be OK. We’re here for you. You’re with us now.” I’ll never forget that first appointment.
Within a few days, Levi turned a corner. He was finally happy.
We’ve encountered many bumps in the road over the years with health problems, but Advocate Children’s Hospital was always one call or message away. I knew they were on my side and cared about what was best for Levi and me.
What I’ve learned through this is that a special child needs a special doctor. I’m so grateful for Levi’s cleft team. They lifted us up when we were down, encouraged us when we lost hope, and celebrated our milestones. They never made any problem seem big, which kept me calm.
We always made appointment days into a special trip, packing activities, snacks, and drinks and stopping at the store to get a book or toy for us to do together. I made it a goal to focus on Levi the entire time without any devices. If Levi had to spend his days in waiting rooms, we would enjoy those hours together. Levi graduated from the clinic at the beginning of January, and I think he’s going to miss it.
Levi is now 8 years old. He loves running, reading, biking and eating! He often has a smile on his face, he’s quick witted and loves to entertain his family. He’s a sweet boy who fills our home with laughter.
This journey has taught me that when you think you have it bad, look around, and you’ll find someone who not only has it worse than you, but is facing their hardships with determination and a smile. I’ve tried to teach Levi that same determination and smile as we’ve visited the clinic and witnessed the lifelong struggles some families face. But regardless of our circumstances, we will all continue forward, one step at a time.
Jackie Szwarga is Levi’s mother.
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