When I saw the piece in People Magazine excitedly promoting Wonder (the movie starring Julia Roberts!), I was a mix of nervously excited and terrified. Excited for the education on TCS this film might provide the world, and for the love for and understanding of people with TCS. The nervousness and unease I feel is derived from the fact that this is a sensitive subject, one obviously very close to mine and Landon’s own life, being put on display by Hollywood.
To be honest, when I read the blurb from my mom’s magazine, tears immediately fell and my voice caught in my throat. I was unable to respond to my mother’s sheer delight. Here she was full of amazing and insightful ideas of how we are going to finally have a national (or international!) conversation about differences. On the Today Show! Call Willie Geist! Who do we know? And so on. As my amazing mother went on about the week long segment she would produce, I sat back and tried to control my reaction.
The tears that fell stemmed from a variety of sources. First- I am overwhelmingly nervous about how this movie will be done. Will it represent any of our authentic stories- the right way? Second- I’m concerned about the reaction to the film. Will it trigger more understanding or further ostracize people with TCS? How will it or can it shape public perception of these children and adults? Third – Will it provide what I wish people everywhere knew about the syndrome? And what about what they know about parenting a child with TCS? Will Julia… like… get me (and all the other amazing parents)?
I can’t control or answer the first two concerns or questions. Those chips will fall as they may. I’m not the Producer or Director clearly. But… I can work on number 3. I can publish what it’s like and how it feels to parent a child with TCS.
Julia, listen up sister.
10 Things I Wish You Knew About Parenting a Child with TCS:
1) I spend an inordinate amount of energy trying not to think about TCS. This comes from my friend and all around incredible human, Rob Williams from Look at Us. Rob reiterates to me every time we talk that TCS should not and cannot define us or our child. I work very hard not to obsess about the future- surgeries, bullying, education, hearing, eyesight, and so on. I try to plan or be proactive about her health and do the best I can to stay on top of everything on her behalf. The advocate needs to take a back seat sometimes though. You cannot do it full-time b/c it’s not all she is, and it’s not all that I am. She is smart, hilarious, kind and truly joyful. She is a friend, a daughter, a granddaughter and A KID. And I want her to just focus on being a kid.
2 ) It’s okay if you want to ask about my child, what syndrome she has, did I know while pregnant, curious about her hearing aids, and so on. In fact… I would rather tell you than have you stare. It’s cool if your kids ask me or her what those little boxes are on her head. We are very proud of them and love telling the tale of the Bahas. Again, say hi, be friendly like you would with any family. Teach your kids young that curiosity especially coupled with kindness is a beautiful way to build bridges and make new friends. Staring and rushing them out of a situation because they are staring isn’t the best route. Or – it isn’t the brave, vulnerable, loving route in my opinion.
3) The loneliness factor is real. Not because of TCS specifically, but because my child is in fact (wonderfully) different and therefore I am (wonderfully) different. In the beginning, those friends that were like sisters already… the ones that have seen it all with me and still love me… they rose up. My friends have helped me keep perspective when it’s been too hard to smile. I’ve been able to share things with them that I’d much rather have kept private. On the other hand, there have been friends that have broken my heart. I’ve also started over in a new city doing something for a living that is extremely isolating. I’ve gone through a divorce and sadly lost friends that way as well. To keep perspective in the last two years, I’ve thrown myself into other things- new relationships, fitness, anything healthy for my mind and body. Sometimes crying heals me in its release. Loving myself so I can love her is the most important thing of all.
On another note… my TCS or “different” parents are my favorite community in all the land. If you are a parent of a child with any difference, reach out, find me, find others, build your tribe. They make you feel loved and safe and NOT (AS) ALONE. This amazing syndrome and world of people connected to me that have differences in their lives are the best thing that ever happened to me.
4) I know an awful lot about genes. Not jeans, genes. If you’ve known me a long time, you know that I ran from biology in middle school and hid from chemistry in high school. But over that last four years, I’ve somehow become a gene expert. Genes are awesome! Okay that was nerdy. With such a rare syndrome, I have become fascinated with what causes the syndrome, what exactly happens at the cellular level during conception and will Landon’s children have this eventually. The causes of TCS are 60% a gene mutation and 40% are inherited. Calling something a “gene mutation” is a scientific term, and is not remotely the same thing as calling her a mutation or mutant. For the love of Pete.
Real quick: Mutations in the TCOF1, POLR1C, or POLR1D gene can cause Treacher Collins syndrome. TCOF1gene mutations are the most common cause of the syndrome, accounting for 81 to 93 percent of all cases. POLR1C and POLR1D gene mutations cause an additional 2 percent of cases.
5) Writing, coming to grips with and owning my birth story was brutal and beautiful (brutiful if you’re a Glennnon fan) and it was the healthiest thing I’ve ever done. You can read it in Start Here up above and anytime you want to swap stories, holler. I think my child is perfect. I loved all that I’ve fought for and the incredible beauty in my life. I cannot deny though how hard entering motherhood was for me. I think the vulnerability derived from telling that story was/is remarkable. The strength I’ve gained from that experience is still paying off even today.
6) I’ve become a (mommy) speech therapist. I’m not close to licensed nor do I pretend to be. I do not have any other “clients” other than Landon. But I have learned enough of the tools, verbal cues, ling sounds, how to correct a dropped or front-loaded sound, and more. Beyond an advocate or mother, I’ve needed to bring therapy and corrective cues into our home like every other parent I’ve met. It’s a natural part of our lives and one I’m always explaining to people why I’m sounding something out that way, why I put my finger to my lip, why I smack my lips, and other odd things. We speak therapy to each other, it’s cool. I will, for the foreseeable future, still fight for her right to therapy. You real deal therapists rock my world.
7) Small moments still affect me even 4 years later. When she rests her sweet head on my chest only to hear shrieking Bahas squeal back at her… my heart drops. When her eye rolls to the side and she cries that it hurts or says her “eye isn’t working”, I get a pit in my stomach. When she’s at the pool with her hearing aids off and a little girl asks her name and wants to play with her, but Landon doesn’t hear her so the girl moves along, I typically rush over and collect her in my arms. She usually pushes me away like I’m a helicopter parent, but my nerves are just not made of steel.
8) I will always over-analyze her education. Is she able to follow along in her little class? Can I ever send her to public school? Is the classroom size a big deal or not with the microphone? Oh, if we use a microphone, will the teacher mute it when dealing with another kid? Will she need an aid if she has a large classroom size? Will the aid make her seem too different than other kids? Could I remotely afford private school? And so on.
9) I am notoriously suspect of all specialists at this point. I’d like to say I’m optimistic it will improve but I doubt it. So far in Charleston, I’ve had a hard time not pointing out things I wish they’d test, things these folks should know and I compare them constantly to the people we met in NYC. I’m a pain. I know it and I should come with a t-shirt when I walk in that announces how know-it-all I plan to be. Sorry I’m not sorry.
10) I think my daughter is the most beautiful child I’ve ever seen. I think her skin is nothing like any other child’s. Her laugh is infectious to my ears. Her hair is something I’m still trying to copy with my colorist. This girl has been dubbed by our little blending family as the silliest of all silly gooses and sometimes the ultimate nod as “most hilarious.” She is stunning to me in every way.
There you have it, thoughts on parenting in my world.
**In addition to the parenting side, I’d like to clarify this about TCS as well: TCS does not affect the brain’s development nor cognitive ability. In fact, Landon is wicked smart. She just started adding at age 3, knows which are the words “the” and “train”, and seems to have a semi-photographic memory. Shameless mom-bragging aside, this is FAQ and one that most people get wrong about rare syndromes.
As far as the movie goes, I’ll certainly work alongside my mother in the hope that someone at some morning show somewhere will dedicate a week long segment to Differences and truly celebrate the essence of the book. If you have any tips or intros you’d like to pass along to me in order to champion this cause let me know!
Sending love –