Chelley Martinka: A is for Adelaide - and Advocacy
Posted on 12 December 2016
“I'll change right here. There's no shame in my game,” she says, with her large blue eyes shining defiantly. Chelley Martinka, mother of two young girls and the talented blogger behind A is for Adelaide, disrobes without a second thought in the parking lot of a public park in the middle of November in Massachusetts as we prepare for our photoshoot. Chelley is an open book. She wears her experiences, both literally and figuratively, at the surface of her skin, which is adorned with colorful tattoos memorializing various experiences that have profoundly shaped her life. She is raw and impossibly vulnerable and invulnerable at the same time. Within minutes of beginning to read one of Chelley's blog posts, I feel the sting of tears collecting in my eyes, either from the raw emotion embedded in every single word she writes, or from the inspiration I feel when she advocates for the disability community, mental health awareness, and women's rights. Without fail, the tears spill over as Chelley's words lodge themselves in my heart and mind.
Chelley nursing her younger daughter, Millie, in our Isla dress
A is for Adelaide began when Chelley's daughter, Adelaide (Addie for short), was hospitalized at two months old for a persistent mild-grade fever, lethargy, and a lack of appetite. These symptoms, along with Addie's abnormal length, weight and head circumference, led to a battery of tests. Although the symptoms that required Addie to be hospitalized were unrelated, the doctors diagnosed Addie with Achondroplasia, a form of dwarfism. In her first blog post, Chelley wrote, "In truth, as I write, she is getting better from whatever brought us here in the first place; No fever, less lethargic and eating much better. But she is still here. I am battling with her being sick and getting a lifelong diagnosis that I’m not sure the right way to process. I am dealing with the good news of no hydrocephalus and the shock of knowing my daughter will be physically different from other children.
And here I am. I’m angry. I’m really angry. I’m so ashamed of myself for, potentially, making life harder for her. I am, in my mind, at fault. I want to help her be the strong girl I know she is, but how can I do that when I’m falling apart on the inside? I’m angry this will impact her. I’m angry other children won’t get it. I’m angry that people in her family, at least not everyone, will understand and respect and be “ok” with her stature. I’m angry people may point, laugh, call her names, misunderstand her, and hurt her. I’m angry, damn it. I really am. Perhaps some of my fears are masked by this anger, which I’ve always been so quick to feel, but for now I’ll call it a pure emotion and hope it unfolds well.” https://aisforadelaide.com/boston-lifestyle-blogger/the-first-post
Chelley wrote these words four years ago, and has grown as a mother and advocate since Addie's diagnosis. As a mother of child with Achondroplasia, Chelley has experienced everything from strangers snickering and name-calling to more innocent, but equally hurtful actions, such as parents shushing their kids who are asking about Addie's differences or responding to learning about Addie's diagnosis with well-meaning, but off-base comments. The first few years of Addie's life, these situations would, understandably, provoke angry responses. “There's a lot of things people say, and they mean well, like, 'She's still beautiful.' I know she's beautiful! Then they think, 'Oh, why did I just say that?' People don't mean to be hurtful. It took me 2 ½ to get to that point where I'm not angrily responding, 'Why wouldn't she be?!' I don't want Addie to be angry. People outside of the disability community jump to that immediate anger. I don't want you to respond angrily in front of your kid and my kid. I don't want you teaching your kid to be angry for my kid. She can be angry about it, but she has to make that decision. I hope to teach her that that anger doesn't need to be negative. You can turn it into a way to be proactive. It doesn't have to be explosive and angry. That's not going to teach anybody anything. But it took me 30 years to get there. I'm not expecting her to master it at 4 ½.”
Chelley has worked hard to overcome her anger in the face of ignorance and discrimination in order to respond with information and education instead. Chelley does, however, understands the importance and power of anger, and is careful to let Addie and her younger sister, Millie, experience and express a full range of emotions. “I walk that fine line of being a feminist, where I don't want to say, 'We only use nice words!' No, we don't only use nice words. Sometimes nice words don't make our point.” Chelley's eyes shine with a determined fierceness.
As parents, our feelings and behaviors can have such a powerful impact on our children. As a mother of a child with a disability, Chelley realizes that it's important for her to let Addie figure out how she feels about and how she will react in the unique situations she will face as a person with Achondroplasia. She is careful to not to pile the weight of her emotions on top of Addie's own feelings or to make Addie feel responsible for protecting her mother from the pain of seeing your child hurting. “I try to keep my hurt in check so I'm not teaching my girls to be hurt all the time. If they have that emotion themselves, that's fine. I need to keep my anger in check because I don't ever want Addie to think, 'That really hurts my mom.' I have to keep my own emotions to myself. I will come home, and I'm smiling. Then (my husband) Dave will come home and I'll say, 'I need to go lose my shit for a minute.'”
While Chelley's work as an advocate for the disability community is admirable, it is how she has empowered Addie to be her own advocate that has really impressed and inspired me. Following your child's lead, letting her navigate her own world, and figuring out when to step in and when to pull back is a balancing act for any parent, but is compounded when your child will inevitably face difficulties specific to a disability on top of the everyday difficulties all children must overcome as they grow up. Chelley writes:
You have asked me often: How will my child advocate for themselves? When are they ready to answer for themselves?
The answer is simple, though hard to fathom: When you let them.
So, how does one foster autonomy in their child? When does a child begin to advocate for themselves; an extremely important trait, especially in the disability community?
Addie is 4, but started school last year, and we worked hard on her voice versus our own. We opted to not give a talk about dwarfism to the school (yes, of course they know!), but filter her disability through conversations on the playground with other parents, and through her daily activity. I am hoping this gives Addie a moment to take in her environment, settle, and ask for help as she goes. If we never let her try, as her parents, we’re creating avoidable failures for later in life. https://aisforadelaide.com/2016/09/12/autonomy-in-our-children/
Chelley lets 2-year-old Millie climb an almost terrifyingly tall slide, giving her soft words of encouragement from the bottom. "I can do it!" Millie says, triumphantly.
As a mother, it tears me up to imagine someone blatantly laughing at or saying something derogatory about my child. As parents, we often want to protect our children from the cruelty and pain others can inflict upon them. When I ask Chelley how she responds when people behave in a hurtful manner to Addie's visible differences, I am blown away by her response and the amount of confidence and sense of empowerment she has helped instill in Addie. “When someone says something, I take a deep breath and look at her to see if she's about to say something, because she might. Very often people will say, 'Aren't you guys so cute. You're twins.' And she'll say, 'We're not twins. I'm four. She's two. I'm Addie. This is Millie.' She'll answer why she's small. 'I have achondroplasia.' She has a form of dwarfism, but she is not dwarfism. Responding is situational. There's no one way. People will say the same things, and you can tell by their demeanor whether what you say will make a difference. On countless occasions, I have said something and they just look at you like... And I'm just like, 'Oh my God, is your face stuck?' OK, that didn't get through, and I end up feeling frustrated. I don't want to feel that frustration. I don't want to waste my time.” Chelley's big blue eyes clearly convey the weight of countless frustrating interactions. “I'm not always going to say something. If they're not open to learning, and you can kind of see that about some people, then what's the point? To be argumentative? If they have made up their mind, maybe they'll give you a half-assed apology, but I don't need that. I don't need to get into a confrontation solely to appease myself. That's not teaching the girls anything. Giving Addie her own voice is very important, but it is not a narrative that is one-sided. It is not she tells her story, I tell her story. It has to be a family cohesion. There are times that one person won't say something and you will have to say something. You will feel compelled. Half the time that's Addie over us because Dave and I don't want to step on her toes. If it's something that is possibly inappropriate, if it's an innuendo, and she's not there yet, we're not there to teach her things to be offended about. I am not teaching her to be offended. I am not teaching her to be angry. She will find her own way. If you say something that's so blatantly ignorant, and she didn't hear it, I might side-eye you until you take your titter down the hall. I'm not going to yell at you. I don't want to yell at you. I have two kids, I yell enough. Sometimes when I look down my nose and talk to somebody, that teaches them enough. And sometimes it's not and you know it's not - all they're going to do it look away and keep talking. What do you do at that point? Do you launch into something? Those people are not ready. They're not ready to learn, and you can see it. If they know they're hurting somebody and they're still laughing about it, they're not ready to learn, and you have to let them go.”
Millennials have grown up with social media, and have become accustomed to “oversharing,” which often comes into question as we become parents. Chelley, as a blogger who writes about her children, has contemplated these issues extensively. “We have discussed Addie's privacy. We go through pictures together and before I post them, she gives me a yes or a no. And if it's a no, I don't do the, 'Oh, but...,' because I don't want her to ever feel that anyone conned her into anything. I don't ever want her to be in a situation where someone's like, 'Oh, just try it. Oh, come on. Just try it and you'll like it.' No. She said no. I want her to know that her no is respected. When I write about her medically, I do it from my point of view. With dwarfism and advocacy, I write about what I experience as a parent. I mention some of Addie's experiences, but I don't share her story as much as I used to. I understand that in first grade, second grade, she may say, 'I don't want to be written about anymore,' and that's ok because this is not my story – it's her story. I have some fantasies where she comes to me and says, 'I want to write on the blog,' and I'll let her have her own section. But for now, it's bringing everyone into the story. We're a family and yes, I sometimes write about Achondroplasia, but I also love writing about recipes, travel, and the crafts that we do. I love writing about stuff we do in the house. The blog will not end when Addie says she doesn't want to be written about because I am still involved in the community. She is a member of the LPA (Little People of America), and when she's a teenager, she may want to walk away. It's very common to have those teenage rebellions, not wanting to be pigeonholed in a community. She might come back. She might not. I don't know.”
Mental Health Awareness Advocacy
Depression is my roommate.
We live together, most days, in harmony. But like any roommate you’ll ever have, Depression has her triggers. Some days I have NO idea what sets her off, but she turns into a bitch, tearing my life down, brick-by-brick, until my foundation is laid bare.
Then there is just the very bottom of me.
Two legs left to stand on.
And what do I do next?
Depression is a brain disorder. Depression is not sadness. Depression is not anger. Depression is not crazy. And depression feeds off of alone.
You need a team.
People that have been on my team, currently, or in the past include:
Friends, an inner circle
An emergency contact
Chelley is oftentimes so open and raw when writing about her experiences with depression and bipolar disorder that it is difficult not to feel a physical pain in your chest while reading. The power of her words and acknowledgement of her experiences bring to light a difficult subject that few like to speak about. Chelley writes, “I’ve thought long and hard. My children will see this. My grandchildren will know. Depression runs in my family. But I am not embarrassed. I do not fear people knowing. I am not ashamed. If we’re going to tackle the blame game being passed around the internet, we need to be transparent. I’m see through. And though you can see though me, you can still see me. I won’t let others who you refuse to see, suffer anymore. I won’t let you not see them. I wont let you blame them.” https://aisforadelaide.com/2015/07/25/im-not-a-killer/
I ask Chelley if it's difficult or scary to be so open about her experiences, and for the first time during our discussion, her bright blue eyes momentarily look down at her hands. She pauses and says, “People always think, 'You share a lot. I know everything about you.' You only know what I want you to know. I do talk about depression. I do talk about the fact that I have been hospitalized. I don't talk about what happened when I was hospitalized. I don't delve too deep into that, mostly because when you bring up those things, then you feel them again, and I don't always want to revisit those things, the ugly parts. When I do bring them up, I get an influx of 'How did you do this? How have you done that? Aren't you afraid?' These questions come in droves. And when I answer them people are like, 'Oh my God, you've given me hope.' The comfort it brings certain people is worth the pain of revisiting. And I always think to myself, 'If this one person asked, there has to be someone else.' They are getting the message that there's nothing wrong with them and that there is a hope out there. That to me is why someone should write about it, if they can. If they can."
Chelley laughs as she recounts the funny parts of navigating bipolar disorder and depression as a teen and finding the right medications to treat them, like the time she was that one out of one million people who will produce breastmilk as a side effect of one of her medications. “I'm just straight chilling with milky boobs. Bipolar, crazy old 14 year old! Bring it on! What have you got for me next? And that's what I like to tell people. I know medicating and regulating your medication are awful. It's awful. But when you look back on it, I promise, it is so funny. Like the time they had to take everything away when I was hospitalized, and they're putting it in the sharps closet. 'But it's a ponytail holder!' You can't have it. 'My god, why?!' It has a metal piece on it. 'I just want to put my hair up!' We'll get you a two inch ribbon. 'Do you put your hair up with a 2 inch ribbon? What do I look like, the Bobbsey twins?' You look back on it and you're like, 'How funny, the day they put my ponytail holder in the sharps closet.' I was like, 'But my hair looks bad.' They said, You are in an inpatient program. What is your concern? But you're thinking, 'That's my last shred of dignity. No makeup, my face is breaking out. I have nothing left!' When you do find what works for you, and it might not work for you forever, because goddamn it, we're always changing, when you get there and you do have that happy moment, whether it's a happy couple of years of your life that you are totally on track, whether it's a couple of decades, take it, write down all the things that are funny, because you'll go back sometime, even on your worst day, and think, 'Remember that time I was topless in my garage and I squirted breastmilk at my mother,” and you will laugh.
One minute we're laughing, and the next, Chelley stabs me in the heart with her brutal honesty about the struggles she faced as a teen. “You go to the doctor and they're like, 'How do you feel?' Like I want to die. Like I can't do it anymore. I don't want to wake up. I don't want to go to sleep. I can't sleep. I'm exhausted. Everything hurts. I can't feel anything. All the things, all at once, all the time. I never shut off, but I can't compute anything. I'm trying all these different medications. How many can there be on the market? I'm gaining weight. I'm losing weight. I'm breaking out. My hair is oily. Everything happens at once. It's the darkest days of your life, when you're like, 'I can seriously just help you pick out my casket today. Because I'm feeling happy enough to decide whether I want velvet or satin, but I'm not happy enough to not want to die. I want to make the decision of red velvet or white satin.' And how heartbreaking to know I said that to my parents, but literally that was a decision I needed to make that day. That's a dark time.”
She pauses as I take it all in and sit with the heaviness. “It's something I'm honest and open about, because I want people to know that there are those dark moments at some point. I'm not medicated now, by the way, and that may have something to do with the fact that when you have kids your chemistry changes – there's no way to really figure it out. And I'm not not sad some days. I haven't rid myself of any of the obsessive compulsive things – it still gets pretty bad. But the deepest, deepest darks, and the brightest, brightest brights aren't as dark or as bright as they used to be. And with depression, I hear time and time again, 'The sun will come out tomorrow.' 'You decide whether to be happy.' Really? Is that how you feel? That's not how it works. That's like saying 'You decide whether or not you have cancer.' That's not how it works. You don't decide what your brain chemistry is made up of. Even when you're medicated, your body doesn't react to things the same way as other people, or even the same way over time.”
Chelley compares the stigma of struggling with mental health to the stigma of being the survivor of sexual assault, which she also often writes about on her blog. “I think it needs to be out there too because the victims of sexual assault can be seen as black or white. You're either this woman who acts like 'it never happened to me' and you push it down, or you have the image of the woman who has been sexually assaulted and is very frail, afraid. I like being the middle ground. Yes I've been there. I'm not a frail woman. I'm not afraid. I'm not afraid to get hit by a boy – I've been hit by boys. I'm not afraid to walk down a dark alley because I don't think everybody does these things. But it takes a long time to get to that point. I lived in Philly for a while and I was on high alert, eyes wide open, and every noise... I don't want to live like that. I want people to know that you can get past that, if you try, and if you have help and you build your community. Yeah, it takes a lot of hard work from the survivor, but it takes a lot of hard work from your community. You need a community that's willing to fight for you, willing to work with you, willing to help you, willing to take your hand, and willing to pick up the phone at 2:00 in the morning when you get out of a job and you're walking home and you're terrified and say 'I'm in my pajamas, but let me climb out of my bed and I'll come walk with you.' It was important. I needed backup, and you have to find that backup. And that backup's not always there. It's not easy to crawl out, and you can't always crawl out yourself. And I loathe meme after meme, blaming the victim instead of the assailant. 'What were you wearing? What were you drinking?' Why? Why do you care what I was wearing or what I was drinking? Don't worry about what I was doing. Worry about your hands and your body. Why aren't you worried about yourself? I'm not worried about me. I'm more worried about you."
I pause, holding the weight of everything Chelley has recounted to me for a moment, and then ask her if she feels that her experiences have made her a better parent. She tells me, “I don't like the word better for anything, unless you're talking about wines, and then red is better than white. Caffeinated coffee is better than decaf. I think it gives me a very different and wider perspective because I have been to the brink when they're having a temper tantrum, or whatever's happening. I have been to the brink where you're at that moment of pure rage and you understand why there are doors in a home because you need to put yourself on the other side of it. I'm standing there at the brink and I need to leave. I need to be on the other side of that door because I am shaking and angry. You are not listening to me and I don't want to yell at you, so I'm just going to stand here. And then I'm thinking to myself, if this is the last thing that happened... If I'm going to my meeting and you're upset because you don't want me to leave, me being angry at you - is that what I want? No. I want to take a deep breath and we're just gonna hug it out. And I will wrap them – those poor little kids, they're like little octopuses trying to get out – and I'll just wrap them. I think my life experiences cast a wide net over many things. We don't have a 'typical' experience anywhere in our extended family. I don't take it on my shoulders to say, “I have all this knowledge.” I think that because I'm surrounded by people and we all have a very interesting story, we cast a net of a lot of experience and a lot of viewpoints and vantages that give the girls a leg up. There are days that are going to be harder, and that doesn't mean we lose our shit, ladies. Get your bootstraps pulled up tight, because we're going to need them.”
As a mother, blogger, and dedicated advocate of women's rights, it is no surprise that Chelley shares photos and videos of her younger daughter, Millie, breastfeeding. While most of the breastfeeding pictures and videos she shares get a bunch of likes and encouraging comments, one video that features Millie nursing at 1 ½ years old has gone semi-viral. She explains, “It's up to 1.4 million views. People are sharing it and calling me all sorts of names. Do you remember when the Badass Breastfeeder posted the picture of the deer who stopped traffic. The day the Badass Breastfeeder posted that, I posted a video of me nursing Millie. It has gotten real lovely. I have been called all the names. 432 comments. 242 shares. People have called me all sorts of names and have told me they're reporting me. This one woman wrote, 'You get off on it.' Here is a woman attacking another woman, calling them titties. Are you kidding me? Have you ever breastfed a toddler? A breastfeeding toddler is the worst thing in the world! I'd rather be beaten with a mace!” Chelley laughs, and adds, “Not really.”
“I'm not going to take this down, and I don't post pictures of breastfeeding on the regular, because I know that she's older and it makes people uncomfortable, and my goal isn't to make you uncomfortable. I posted breastfeeding pictures because I did think there was an educational value, when she was younger than 2. I did it because they normalized breastfeeding. If she had a bottle in her mouth, nobody would be kvetching. I had no problem posting those pictures when she was younger. She's a year and a half in this video. I have no problem posting this video. I kept this video up, even after it got really nasty, because people don't know the truth about breastfeeding. I've been grocery shopping, and I've had to like to duck the baby under my shirt. People look at me, and I think 'Like this is what I want to be doing...' It's the same thing as when you're out and you're stressed and they're crying and the only thing left to do is whip out the animal crackers or the crayons, or whatever they want out of your bag - the magical bag that has all the things to calm them. My magical bag happens to be a very old 34DD Victoria's Secret bra! And she's at the age where if I put a binky in her mouth or gave her a stuffed animal, what would that matter? Until you come to my house and pay my bills, don't worry about how I raise my kids. People are like, 'Oh, just put it in a cup. If she doesn't take it in a cup...' If she doesn't take it in a cup, then what?! What are you gonna do? You gonna come here and force her? No, you're not. I put breastmilk in a cup once, and she looked at me like I had just lit her face on fire. So I was like, 'OK, so that's not gonna work for you.' She's never had a bottle. And she does drink cow's milk, and she drinks it out of a cup. She loves cow's milk, but she also loves nursing. She still gets breastmilk, but she mostly needs the comfort. It's the same way Addie loves to snuggle. What am I gonna tell her, “Oh you're four now, you don't need to snuggle?”
Always the advocate and a believer that education is the best way to address hurtful comments and behaviors that can arise out of ignorance, Chelley mentions a brilliant solution to the discomfort about breastfeeding some people experience. “It's very disheartening that I didn't learn about breastfeeding in high school the way I think that they should teach it in health class. I had the very same biases about breastfeeding that a lot of people have - that even other moms have - and that's very scary to me. I wish there was more education, and that's part of my goal. It's more than just pictures on the internet with #freethenipple. I am appalled by a young woman who I know who thinks I molest my child, and has from birth. And she has a child of her own. She has literally said to people that she hates me – because I breastfeed. There needs to be more education.”
Although Chelley started A is for Adelaide to advocate for Achondroplasia, her blog is so much more. It's a celebration of the joy and triumphs of parenting that all mothers can relate to and be inspired by. It's an honest account of the times she felt that she has screwed up, letting other mothers who feel ashamed and guilty know that they are not alone – we are all doing the best we can. It's filled with hard-earned wisdom beyond Chelley's years that can teach us all to be be better and more understanding people. It's filled with bitter truths about the painful aspects of the human experience, but also filled with inspiration and hope that they can be overcome with information, support, and understanding. A is for Adelaide is is a beautifully honest account of a wildly interesting and inspirational woman raising her incredible family that will stay with you long after you finish reading.