Our story :
FINALLY!!! I was induced because of severe polyhydramnios, and FOUR days later, PJ finally came out! His dad and I were both crying with joy and relief. They put him up on my chest for the first time.
The doctors and nurses did a double take and immediately took him back. Being our first baby, we were so confused as to why they would take him back?!?! We hadn’t even seen him yet. What was wrong??? They kept him in the room for a few minutes as dozens of people were rushing in and out. And then everyone rushed out with him.
My husband followed and came back a few minutes later repeating their words.... “Treacher Collins”. Treacher Collins? I don’t know what that means??? As I’m still crying on the delivery table with my lifeless legs in the stirrups, my husband googled Treacher Collins.
Treacher Collins Syndrome causes underdeveloped facial features which can range from moderate to severe and can affect breathing, eating, hearing and sight - to state it in a politically incorrect way, it causes deformities of the face.
We spent the first 65 days of PJs life in the hospital... We celebrated Christmas, New Years Eve, my birthday, and Valentines Day while living in the Nicu with PJ where he had two surgeries before we were allowed to bring him home.Now, at the age of 2, PJ has had a total of 5 major, medically necessary surgeries which have enabled him to breathe, eat, and grow normally. And he will need more medically necessary surgeries in the future. But he will still look different. His ears, face, and eyes will still look different. I think he’s the most beautiful boy I’ve ever seen but I fear how he may be treated by other kids when he starts school.
When PJ was born there was a movie in theaters called Wonder that was based on a best selling novel. It is about a fictional character named Auggie Pullman with the same condition as PJ. It is told from Auggie’s point of view as he starts fifth grade and endures horrible bullying for looking different.
I went to the theatre and saw this movie when PJ was 15 days old and still in the NICU. All of my fears and hopes for PJs future were embodied in this young character and his story!
This incredible book/movie started the “ChooseKind” movement and is now widely read in elementary schools to combat bullying and encourage kindness and inclusion.
I realized that we have an incredible opportunity to spread kindness by having PJ visit schools that have read Wonder. Meeting a real-life Auggie Pullman helps bring the book to life and expose the children to differences.With the hope of influencing future generations to be kinder and more tolerant of differences, we have become certified motivational speakers with the Children’s Craniofacial Association and volunteer to speak in schools that have read Wonder. While speaking in schools, we also incorporate fundraisers to raise money for various non-profit organizations that help children, like PJ, who have excessive medical expenses. We call these fundraisers “PJs for PJ”. For a small donation from each student, the kids are allowed to have a pajama day while we discuss kindness, inclusion and acceptance. So far, “PJs for PJ” fundraisers have raised and donated over $65,000! My hope for PJs future is that the world will be a kinder and more accepting place where people can learn to look past his differences and see him the way that I see him. I hope that PJ learns to advocate for himself in such a positive way that people will not see him as “the boy with Treacher Collins”, but rather, “the boy who speaks in schools, encourages kindness and raises money for other kids”.