What I want you to know about having an intersex child

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest post is by an anonymous reader. 

I recently found out about a condition babies are born with called AIS (Androgen Insensitivity Syndrome). In a nutshell baby girls are born with XY chromosomes also known as intersex. There are different forms but basically their body couldn't respond to the testosterone to be a boy so they are born all girl but with a Y chromosome, which is primarily considered genetically male. Because their bodies cannot respond to the testosterone they are very feminine. They have no uterus so they are not able to carry a child. Conditions such as AIS are in a category called DSD (disorders of sexual development). There are over 40 different types of DSDs.  

My daughter is intersex...

Our story begins 2 1/2 months after having our beautiful baby. We went to the pediatrician to finish up my daughter's two month vaccinations. While there I asked the doctor to check out a lump my mom had found in her labia a couple weeks before. I had looked it up and found it could be a swollen lymph node, and swelling in the genitals is normal for newborns so I wasn't too concerned. To our surprise our doctor mentioned a hernia as well as ambiguous genitalia and referred us to the Children's Hospital. We were able to get in the next day. I cried and begged God all that night for it to be nothing. My heart hurt like never before but I truly believed we would show up the next day and they would tell us how silly our pediatrician was.

At Children's the next morning we met with a DSD team made up of surgery, urology, genetics, and gynecology doctors. They began with a physical exam finding a second lump. After a lot of talking and next steps they sent us for an ultrasound. They couldn't find a uterus. They sent us to get blood work, telling us they wouldn't have a lot of answers for a couple weeks but they would have the chromosome testing in the next couple days. They called two days later to tell us she was XY . . . genetically male.

For 3 days I experienced panic attacks, I couldn't eat, I lost six pounds and I was going through the stages of grief over and over again, one moment I was in complete denial, the next I was bargaining with God. I was troubled with what the future for my daughter will be. I kept asking myself "WHY? WHAT DID I DO WRONG? WHY THIS?" I felt a great sense of loss. I felt like I'd lost all the joy of being a new mom, like all my instincts and happiness towards her had been taken from me. I also felt a lot of guilt over my grief. She is still the same sweet baby. 

My mind was racing; IS she a girl? Is SHE really a boy? Do I dress her the same? Can she live a "normal" happy life? Will we live with this hurt forever? Will she want to be a boy? Will she be treated badly? Will I ever accept this? Will a boy ever love her? Will we be okay?...

All I want is for my baby to be happy with her identity in the future. Since time has passed since first finding out I found myself going through waves of acceptance; some days harder than others. I have found myself preparing for the conversations of how she will not have a menstruation and how she will be a mommy but won't be able to carry her own child. I realize the more I accept these things the less big of a thing it will be for her because she will know no difference. 

I have come so far since that day of first finding out but my hurt and fears no longer lie within me and my acceptance but that of others. As I've researched I have found this isn't as uncommon as we think. I have also found out many people want to keep it private... why? Because there are people in our world who cannot understand, who would judge and might call my daughter names. The tears I cry are for the hurt she will experience because of ignorance.

I believe there is a difference between privacy and secrecy and I am sharing this today because I truly believe if more people knew we could squash the stigma that comes with being intersex and make people aware. Parents are amazing and I don't know anyone who has heard our story that wouldn't rally around and lift us up and support our daughter as though nothing is different about her. I am hoping my story brings that awareness. People with DSD need no longer to live in secret.

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#TBT A Knight to Remember

On Thursdays I bring back a post from the archives. This is from December 2009.

So, about Medieval Times. It was an epic birthday for Jafta. The entire time we were there I kept thinking about the part in The Cable Guy when they go to Medieval Times. I think Jafta's excitement made Jim Carrey's enthusiasm look like mere indifference. And you know Jafta showed up in full costume.

I really had no desire to do a birthday at Medieval Times, but I also had no desire to plan any sort of party two days after Christmas. (Note to those of you in the family-planning stages: try not to conceive a child in early spring, or they may be stuck with one of those unlucky post-Christmas birthdays, destined for life to have hastily planned birthday parties where they receive gifts in Christmas wrap while half their friends are on vacation visiting grandparents. Trust me, I know what I'm talking about. My birthday is tomorrow).

Anyways, enough about my childhood pain and on to how I'm inflicting the same wounds onto Jafta. I had absolutely no energy for a party. We offered him the Medieval Times option by showing him a You-Tube video of the jousting, and he readily accepted, even with the caveat that he could only bring ONE FRIEND. Those tickets are pricey! Lucky for us, his one friend (and his family) had won tickets in a raffle and so they all got to come with us.

Because I am cheap frugal, I did try to sneak in a flask, which I felt badly about, until I saw this guy:

I am 99% sure he had beer in that Camelbak system. The seperate water bottle was a bit of a giveaway - I mean, really, how hydrated does one need to be during a 90 minute show?

If you've ever been to the pre-show at Medieval Times, you know it's all just a really big ploy to get you to spend even more money. We arrived early just so I could spend extra time dashing the dreams of my children for not buying them more swords/costumes/scrolls/etc. We also got to watch several Rennaisance Faire regulars get knighted (an honorable status bestowed on anyone willing to shell out . . . you guessed it . . . MORE MONEY). I also got to have several character actors warn me, "My lady, you are not allowed to take photos in this area." Which is so authentic to the period, don't you think? To pay them back for their generosity, and further my streak of miserly tackiness, I decided I would just take my own picture of the photo they were trying to get me to buy. IS THAT ALLOWED, MY LADY??? Take that, suckas!

Jafta was so excited once we got into the arena. As soon as the knights were introduced, he started chanting "We will kill you" in this slightly possessed-sounding voice, that was disturbing and comical at the same time. It reminded me of the "I'm Starving" bit that Chris Farley did on SNL back in the day. Lay off me, I'm starving.

Knowing my track record with spillage, I had strategized before the show to try to make sure that this evening would be spill-free. I knew that I would have three uncontained children, and they made us hold Karis in our laps since she didn't pay the entrance fee. I had packed sippy cups and was trying to be vigilant when they served the hot soup. But pride comes before the fall, and at the top of the show the princess comes out and leads a little toast. India is so excited to see the princess, and so excited about the toast, that she upends an entire mug of Pepsi into my lap. This was not just a little spill. This was a whole mug's worth, seeping into my jeans. I rushed off to the bathroom and tried my best to dry it by performing a variety of yoga poses under the hand dryer, but my jeans were sopping wet. Then it dawned on me that I was two feet away from a wardrobe of wench costumes for sale. So in order to make the rest of the show bearable, I bought a hideous wench skirt and wore it for the rest of the night. India was thrilled with this, and stared at me like I was a celebrity for a good twenty minutes.

And no, I did not take a picture of it. But these kids were cute:

We were seated in the Black & White knight's section, and I don't want to sound judgey but he was kind of a loser. He was the first guy to get killed off! Fortunately the kids didn't seem to notice, because they were too busy eating chicken with their hands (also a major, major highlight for Jafta). I ordered the vegetarian plate, which came with hummus. Which I love, of course. In case you were wondering which part of this dinner warranted the $50 price tag, let me just tell you that it wasn't the dessert. Apparently McDonald's apple turnovers were very popular in the Byzantine era.

Jafta had a really great time, but Karis was loving it, too. She learned how to clap that very morning, and here she found herself in a room full of clapping people. I think she thought they were all there just to play this new clapping game with her. Every time the clapping commenced, she went crazy, laughing and clapping back.

Jafta had a really great time, and he and India have been sword-fighting ever since. I can't believe my little boy is five years old already! He is such a gift and brings so much fun to our family.

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Wednesday's Child: Travis

Every Wednesday I feature a child recently highlighted by a local Wednesday's Child newscast to share the stories of children from around the country who are waiting for a family. My hope is that this can broaden exposure for the children highlighted, but also serve as a reminder that these children represent thousands of children currently in the foster-care system. Perhaps their stories will inspire you to consider opening your home to a child needing a family. For more information and to learn about other waiting children, visit AdoptUsKids.

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Things I’ve learned in 40 years of living

I turned 40 two weeks ago, a milestone that felt pretty big for me. I confided in a few friends about the angst I had, and most of them disclosed that they had felt the same way leading up to 40, but then after the Big Day, it wasn’t a big deal. I’ve had that experience as well. I’m settling into this new decade of life comfortably, and have been reflecting on the gifts of being older . . . namely, having the life experience to learn from my mistakes.


As I’ve contemplated some of the wisdom I have earned in 40 years of life, here are some of the things that come to mind. For full disclosure: I’m not perfect in some of these areas. In fact, this list is, in many ways, a reminder to myself. I’ve found that sometimes you can know something cognitively, and even believe in something as a value, and yet not live that out in behavior. Here’s what I know to be true today, and am trying to reflect in my actions:

I don’t need my friends to be exactly like me. When I was younger, as many youth are prone to do, I tended to choose friends based on common interests. The people who dressed like me, who listened to the same music, who enjoyed going to the same clubs and concerts on the weekend. Of course, it’s second nature to gravitate toward those who share the same passions and interests, even as adults. The details are different but the temptation to cluster around similar people is still there. But I’ve learned that the problem with defaulting to doppleganger friendships is that shared interests can only take a friendship so far. I’ve found that intimacy has less to do with shared interests and more to do with shared vulnerability, and above all, a commitment to growth. The best friendships are birthed from a desire to engage at a deeper level ... to challenge one another, to grow individually and collectively, and to be willing to learn from one another. That’s why I can count among my friends atheists and Christians, Republicans and Democrats, vegans and hunters, single women and moms (and dads.) I no longer need to agree with my friends on all aspects of life . . . I just need friends who are committed to being real and authentic in our relationships.

I can ask for what I want. I don’t expect other people to read my mind. If I want something from my husband, I tell him in clear and specific terms. If a friend has hurt my feelings, I tell them. If someone asks me what I want to do, I make a couple suggestions instead of shrugging my shoulders. Life is too short for the “they should have known” business.

I don’t have time for passive-aggressive people. This is related to above, but I have made a conscious effort to distance myself from friends who are unable to process conflict in healthy ways or express their frustration with others in passive or punishing ways (or by gossiping or triangulating with other friends.) I believe that any close relationship will inevitably run into conflict and hurt feelings, and I think the only way to move forward in healthy relationship is to put it on the table and be direct with one another. I am always open to feedback and constructive criticism in my relationships. In fact, being able to mutually grow and analyze flaws is something I value greatly in my friends. But I am no longer giving energy to situations where I’m expected to figure out (or mind-read) about why someone is upset with me. If they don’t have the maturity or respect to be direct with me, I’m not going to spend time trying to figure it out.

I won’t pretend that I’m not ambitious. I think that we’ve come a long way in terms of women being able to fulfill their professional pursuits, but I’ve noticed that there is still a trend for us to downplay or diminish our accomplishments. I’ve seen far too many women shrug their shoulders or give an “aw shucks” when asked how they achieved their success when I know full well that these women, behind the scenes, have gotten there by sheer work and a drive to do well. I think it’s time for women to stop pretending to have stumbled into their successes, and to own that we have set and made goals out of fortitude and work ethic. Our daughters deserve to see that women can be feminine and nurturing and ambitious at the same time. I will no longer downplay my achievements as a whim, because I’ve worked very hard to be where I am today.

I understand my privilege. While I’ve worked hard for my accomplishments, I also recognize that having been born to a white, middle-class family in the United States afforded me an unearned advantage. Rather than wallowing in guilt about this, I feel like my response should be to use what resources I have to empower those trying to rise above poverty, to give a voice to the voiceless, and to be an ally to those dealing with discrimination and injustice.

I no longer believe that pain and suffering are a result of a punitive God. I’ve never been a prosperity gospel kind of person, but I feel like the Christian evangelical movement still holds on to some fallacies about God doling out health and blessings as a result of obedience. I think God blesses us with his presence and comfort, but I no longer think that Good Christian Living is a way to gain a life free of strife or illness or trauma. Good people will endure tragedies. Bad people will become millionaires. I want to live a life of gratitude towards God but that’s no longer contingent on me getting what I want.

I won’t say “the Lord told me to . . .”  I have stricken this phrase from my vocabulary, because I’ve seen it used as an excuse or a way to avoid accountability for decisions. While I may believe that God gives me conviction, I will no longer play this trump card with others. It shuts down conversation and can be too easily used to manipulate or Jesus-juke others.

I am a feminist. For a long time I avoid that label because I thought it had too much baggage – that it meant I disliked men or shaving my armpits or wearing makeup (all things I actually REALLY LIKE.)  But as I’ve grown in my understanding, I now feel comfortable calling myself a feminist because I strongly believe in the equality of the sexes, and recognize I don’t need to fit a mold to hold those beliefs.

I don’t need my kids to like me. I think they do, generally, but I refuse to parent in a way that caters to their approval. If they think I’m the meanest mom on the block because we don’t allow first-person shooter games, or if they are endlessly annoyed with my rules around screen time or candy, I’m okay with that. I look forward to having a wonderful friend relationship with my kids . . . when they are grown-ups. But right now, I’m making the decisions that are best for them and if they don’t like it, that’s alright for now.

I need to take care of my body. Up until my mid-30’s, “taking care of my body” really meant eating in a way to lose weight, regardless of the nutritional value, or exercising just enough to stay in my skinny jeans. Now, I recognize that I need to eat right because it makes me feel better . . . because I notice a marked difference in my energy and attitude when I’m eating whole foods. And because exercise is the best anti-anxiety med on the market. If these things have the added bonus of weight control, great . . . but I’m going to eat well, get more sleep, and get more exercise because I care about myself. Not just because I’m trying to meet some beauty norms.

I need to prioritize sleep. I’ve never been good at putting myself to bed. I’m a chronic insomniac and for decades I’ve sacrificed sleeping in order to stay up late and get more hours into the day. It used to be that I could function like that, but I know now that my body and mind pay a price when I’m functioning on too little sleep. I’m grumpy, have less patience, and my brain is fuzzy. I need to stop trying to get it all in and just go to bed.

I need to have my own “things.” I love being a wife and a mom, but for my personality, I also need to have some activities and passions that are exclusively mine. I need a sense of identity and purpose beyond my husband and children. They are my first priority, but I also make time to do things that give me a sense of purpose outside the home.

This is some of the wisdom I’ve earned in 40 years, but I’m still actively working to apply it all. I’m a work in progress, but I have to say, I’m enjoying this stage of life.

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Bachelor Recap: A Date for Bimbos

When Sarah was visting last week we asked our readers what we should talk about for our videos, and overwhelmingly everone asked us to recap the Bachelor again. Unfortunately, since Sarah moved, the distance makes that impossible to do every week. But my local friend Samantha and I decided to give it a go. (I’m sorry, Sarah! We only did it once! It didn’t mean anything!)

As you will notice, we were quite comfy with our sweats and some wine – so comfy that I might have forgotten to focus the camera.

Did you watch the episode? Who are you rooting for?

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