Over the course of the last 16 months, I and our family have opened up and shared our journey with cleft, from diagnosis at 20 weeks pregnant, to surgery preparations, recovery, feeding therapy, and of course the daily pictures of our sweet, happy, and wild little boy!
We made the decision to share so openly because I had an overwhelming drive to educate our family and friends along the way with us. We had a lot of unique milestones this year, some curves in the “usual” routine of things, and I knew if it felt confusing and overwhelming to me, that it might be confusing and scary for others we loved and cared about too!
Today, October 2nd, 2019 is another unique milestone for us, one familiar among the cleft community – Patrick is celebrating his 1stSmileversary. The anniversary of his surgery that gave him his forever smile.
This anniversary is such an amazing and beautiful way for families to celebrate the birth of a brand new smile for their babies, a way to take a moment and remember all that we went through, and all that we survived!
The day brings with it so many emotions. The process of putting your baby into surgery is so unbelievably difficult. I couldn’t possibly explain the fear and anxiety that builds up to that day; the way the hours feel like days; or the way worst case scenarios consume your mind.
The emotion most difficult to explain is that I did not want my baby to look different. People would tell me “Don’t worry, they can fix it.” And I knew, from the endless doctor appointments and late night online research that this was of course true. But then my sweet perfect baby was born and I didn’t feel like it “fix” was the right word. Logically, his surgery was necessary, but it felt less like he was being fixed, and more like he was being changed. It felt like something I loved was being taken from me. I feared what his new smile would be like, that I could love it as much as I did this one he was born with!
Taking Patrick to the hospital that day I was putting my baby into a painful and invasive surgery, with a long and difficult recovery. I was also changing his face forever. The anesthesiologist took my baby back to the OR around 7am and that would be the last time I saw that beautiful wide smile of his. It broke my heart in a way I couldn’t believe or explain.
The real, horribly difficult truth to tell you today is that the loss of that smile was as challenging as any other part of the recovery process. For hours after we were re-united I struggled to recognize my baby- the same baby I had held 24 hours a day these past 4 months…
His body was lethargic and limp in my arms, his face swollen and bloody. He smelled of hospital and antiseptic. Too tired to even open his eyes I struggled with the emotion of seeing my baby so raw and vulnerable. I also struggled to recognize one feature I knew to be his. I ached for him to open his eyes so I could know he was still in there.
I held Patrick for hours and hours- he was restless and yet exhausted, whiney, and lethargic. It was almost 6 hours post op before I got glimpse of those bright blue eyes. The moment he opened his eyes and looked up at me, sad and tired I burst into tears. Those eyes! Those I recognized, those I knew all too well. They looked much sadder and much more vulnerable than ever before, but they were clear crystal blue just like his dad’s and they looked at me desperate to make it all better.
Patrick’s recovery was a long, exhausting, and emotional rollercoaster. He struggled with feeding, hated his arms to be restrained, and most painfully – he couldn’t sleep for more than an hour at a time for weeks. Within 24 hours of surgery he gave us his first tight smile and my heart exploded. I was in love all over again, and those small moments would carry me through each day. It would give me the strength to keep fighting, to keep believing in the light at the end of the tunnel.
The day we were released from our restrictions felt odd and exhilarating for us all! Patrick couldn’t believe I was allowing him to place his fingers in his mouth, and either could I!
Each and every day since his surgery I have grown more in love with his new beautiful smile. It is truly a work of art- by the most talented and generous surgeon we could not be more grateful for!
I would be lying if I told you that I didn’t still miss his wide smile. I look back at pictures from before surgery and my heart warms and explodes with love. I will always miss that sweet and unique smile my baby was born with.
Today I will be celebrating the joy of experiencing two perfect smiles. I hope this day can serve as an opportunity to talk with Patrick about his first smile, about the ways that he is unique. I hope to show him how his smiles and his scar are only some of the millions of things that make him special.
I hope that one day Patrick will go out into the world proud to explain to his peers about his scar, and about his first smile. I hope that he will look back at his baby pictures with as much love and pride as I do.
So today will remain an important day for our family, one where we remember to smile, to celebrate all that we can survive, and most importantly, to embrace all that makes us uniquely beautiful.
Please watch this beautiful slideshow- a walk down memory lane, all those phases of his growing and changing smiles. A note to consider while watching – the first song on this slideshow was written by a local Long Island band- The Como Brothers. We met Andrew by total chance on the side of the street in Buffalo, NY the day Shaun and I got married. As a shower gift, Shaun’s mom asked if they could write a song to celebrate Patrick’s birth. They could not have known what the lyrics would mean, but yes Patrick, I will always love just like the first time I saw you.