When Beth sent me this post the other day, I stopped in my tracks as I read it. I then proceeded to re-read it 6-7 times over the next day. What floored me was how similar Beth’s story of Drew’s birth was to Landon’s birth story. My husband Eric and I marveled at how many similarities there are in here between stories, hopes, fears that we both share.
Beth’s courage and open hearted writing is exactly what I wanted for this series. I deeply want to connect anyone that reads this blog with the beautifully raw, real and awesome stories of families touched by and living with Treacher Collins Syndrome. I want each of you to walk into the theater in November or curl up with the book Wonder and carry these families in your hearts as you see, hear and read Auggie’s story.
Settle in and ready your hearts for Beth’s tale. She and her husband are sharing their story with vulnerability and in doing so they are teaching us so much about love and kindness. I am honored to share their story today and more excited that you get to read it.
1. Tell us about your family!
(This is Beth): My family – a 3 ring circus! Andy and I have been married coming up on 15 years, and we have 2 athletic and energetic sons – Michael, who is 14, and Drew who turns 13 in August, and who has Treacher Collins Syndrome. We also have cats and dogs, and a penchant for getting ourselves involved in too many sports and spending a lot of time on sidelines supporting each other.
2. Did you know your child had Treacher Collins Syndrome (TCS) before he/she were born?
This is a tough one. I have TCS, a milder form, but no doctor ever put all of the pieces together. I wear hearing aids because of the undeveloped middle ear bones, had jaw surgery as a teenager, wore glasses … and Andy and I talked about Drew maybe having to wear hearing aids, because my dad did also. But no one ever uttered “TCS” to us.
I ended up having a c-section because Drew was super happy where he was and I was 2 weeks late. The silence in the delivery room when they took him out was something I hope no other parent ever has to experience. The delivery room nurse said, (and this is an exact quote) “You have a boy. There is something wrong with him – he doesn’t have ears – and we don’t know what else”. And then they whisked him away. That moment in movies where the baby gets placed on your chest and you bond? It stayed in the movies. So we waited. Almost a full day after he was born, we had very few answers and then a geneticist came to see us in our room. The geneticist, along with several medical students, stood and looked critically at Drew and said, “Oh! He has Treacher Collins Syndrome. And he gets it from you!” (And pointed right at me.) I was stunned. I didn’t know what to say, so I think I asked how he knew that, to which he responded, “You have a small lower jaw and your left eye is droopy.” I turned to my amazing husband and said, “Does my left eye droop?” (because that was where I was mentally – I then KNEW I was responsible for Drew being born the way he was), and Andy responded, “Baby, I always thought it was cute!”
I try to talk about the dark place I was in as a result of the words from the geneticist, and if I tell someone the story, the emphasis always goes on the fact that Andy was in it with me – that he saw my “flaws” as beautiful. We had genetic testing done, and the TCS came from my father’s side of the family. It all made sense – my hearing loss, my dad’s hearing loss – the small “Calhoun Family Chin” – but it didn’t make it easier. It made it harder because I felt directly responsible for the challenges Drew would face in his life. I still feel that way to some extent, although those waves of guilt don’t drown me anymore. They wash over me in moments when I feel helpless and angry, but then I look at who Drew is and I have to thank the universe for giving him the personality he has because he can deal with anything.
3. What has your experience with TCS taught you as a parent?
That most of us, as humans and as parents, don’t know how to effectively and compassionately teach our children how to acknowledge and talk about people with differences. I think most parents of able bodied kids have the right intention, but so many times, when children are staring and curious about Drew’s lack of ears or hearing aids (bone conduction aids that snap into his head), they stare and don’t know what to say. Parents seem to rush to turn their children away and say “Don’t stare”, which then only makes the questioning child more curious and more confused. We so often deal with the staring, the questions, the looks … that it is our reality. But pretending it doesn’t exist by shepherding your child away from mine makes your child think that there is something “wrong” with mine. As Drew has gotten older, we have learned how to address it with other kids and how to break someone’s stare. We have a plethora of answers to questions and know that for young kids especially, it isn’t about cruelty – it’s about curiosity. “How can he hear if he doesn’t have ears?” And that is a legitimate question! But telling them not to look – that just puts my kid into a box he doesn’t belong in.
So, as a rambling answer to the question – it has taught me that sometimes, despite my best intentions as a human to not make people who are different feel different – for many years, I did exactly that. We have tried so hard to raise our boys to be compassionate and understanding, but a large part of that means acknowledging that differences exist and learning to celebrate the ways that people deal with those differences. Different doesn’t mean lesser, and that is often hard to remember.
4. What do you want people to know about TCS?
Wow – this is a tough one. Appearances are deceiving. It’s not quite ironic, but it is Alanis Morisette-esque: Drew doesn’t have ears, but he can hear more about what is in someone’s voice than anyone else I know. TCS kids are compassionate and beautiful beings who are so in tune with others emotions and experiences – primarily because they are so acutely aware of what it feels to be different.
That the syndrome is a part of my child, and myself, but it isn’t who I am or who Drew is. Yet many people will define him that way because he looks different.
That TCS affects the way he looks – not the way he thinks or feels or functions. I think that is one of the biggest misconceptions about craniofacial disorders – that it impacts one’s ability to think or process. It doesn’t. The bones in his face didn’t grow the way they should have, but his brain did. He’s smart as a whip, as many other TCS kids are, and people underestimate his cognitive ability because he looks different.
5. What is one thing you’re most proud of so far in being a parent of a child with TCS?
Drew is outwardly fearless. He loves sports, and he loves acting, and he isn’t afraid to be in front of anyone. He is compassionate and caring, but relentlessly sassy and smart-mouthed (in a good way).
But that’s enough about him … let me talk about my other son here. Michael is as affected by TCS as much as Drew is. No, he doesn’t have it, but so much of our lives is touched by TCS that it is impossible to ignore the impact it has had on all of us. After we had Drew, we struggled with the decision to have more children because I felt so guilty about the TCS. So, we became foster parents and were gifted Michael, who came to live with us when he was 3. We are so lucky to have found him, because he is the perfect compliment to Drew and to us. Michael is 14, and while he is deep in the throes of being a slightly selfish teenager, he is so acutely aware of how singled out Drew is when we go places. He gets angry on Drew’s behalf, and doesn’t understand why people are “so annoying” (see the teenager emerging?). He sees the stares and gets angry and defensive and protective. But more than that, Michael has had to watch hours and hours and hours of Drew being first – for appointments, for conversations, for tears, for so many things. He goes to school on days Drew has surgery and waits, anxious and scared, until we call the school to tell him that Drew is okay. He knows more about medicine and surgery than he should, and he asks mature and amazing questions. Andy and I have to work hard to make sure that he gets the time he deserves because he sacrifices so much to make sure Drew has what he needs.
So I love my boys and I love our life, and I am so proud of how they both see the world through the eyes of compassion and love.
6. How do you feel about Wonder– the book and the upcoming movie? And do you have any special plans to see the film in November?
I’m scared. I’m so excited because I love the actors and I love the book and I love our life with TCS. But I can’t watch the trailer without sobbing, because I see Auggie in Drew (or is it that I see Drew in Auggie?) We have built a world full of love and protection, and now we are opening ourselves to the world. People might say “That kid looks like Auggie!” or reduce him to just what they have seen on the screen. But maybe I’m wrong – maybe the people who see it will be more compassionate and loving … I don’t know. Andy is really excited about it, and Drew is too. Both Drew and Michael read the book in class in elementary school, and that is another paragraph for another time. But I think my mama bear instinct is coming out and I am just worrying unnecessarily.
But my biggest concern? I’m an English teacher, and I beg the universe – please do the book justice!!! Please honor the characters and the message and make it spectacular! I trust that Julia Roberts wouldn’t make a crappy movie that didn’t honor the book.
7. Is there anything else you’d like to share with us?
Drew is a HUGE Drew Brees fan (from the New Orleans Saints). I wrote to Drew Brees when he played a preseason game in Baltimore and the date coincided with Drew’s birthday, and asked if he could meet him. He said yes. (Well, it was a slightly more complicated process than that…) It was the highlight of Drew’s life, and it raised the bar for birthday presents WAYYYYY to high. It was one of the first real times that I thought about asking for something special for Drew because of the fact that Drew deals with so much and asks for so little. So, we got to go to Ravens Stadium for the Ravens/Saints Preseason game, and it was truly remarkable. Drew Brees was amazing, and the fact that he took a little time out of his life to recognize the strength and challenges our son has – well, that was priceless. I was glad I asked for something like that for Drew. I can’t change a lot about his life, but I could ask for something little in return.
On that note, I must say this. It is so easy, as a parent of children who are different, to forget to take care of ourselves first. I’m not good at that, so it is somewhat hypocritical to suggest, but so few people know what the daily challenges are. Andy and I have struggled in our marriage because of the emotional and financial strain this can put on a family, and I am grateful to have a partner who shares the struggles and triumphs with me. I am grateful to have a child (Michael) who doesn’t care that Drew is different (except to protect him). I am grateful for this little life we have, but have to remind people – it isn’t always Facebook fabulous. We have to make hard decisions about our child’s medical care that will affect them for the rest of their lives, and we do so after spending hours and hours researching and asking questions and trying to learn. We struggle and cry and yell and scream, and we oftentimes forget to take care of ourselves. Just because I don’t bring it up doesn’t mean I don’t need to talk about it, and just because you don’t know how it is doesn’t mean you can’t offer thoughts and distractions. We have been lucky to have a really strong support system and soft arms to cry into, and I hope other TCS families have the same.
Beth- you are so beautiful and I will be forever proud I got to share this with our amazing tribe on this blog.
Sending everyone love, acceptance and kindness-