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Ichthyosis Awareness Month: Why We Chose Genetic Testing

A reality of life with ichthyosis is that we are almost constantly having to explain it to someone. We have come up with our canned responses, kid-friendly explanations, and quick answers to avoid conversations with well-meaning strangers. We have learned how to field inappropriate questions and uncomfortable conversations. We also have learned how to read when people want to ask a question, but don’t quite know how to go about it. I knew that when I got pregnant people were going to have questions. Ichthyosis is a genetic skin condition and Harlequin Ichthyosis is double recessive condition, which is why it’s so rare. Casey and I each have a different mutation on the same gene. This means that there is a 25% chance that any child we have will have the same skin condition as Olivia and a 50% chance that any child we have will be a carrier of one of the two mutations. These numbers are always swirling when we talk about future children, whether between the two of us or when others ask.

I knew that an invasive (although generally well meaning) question that would come up would be whether this baby has Harlequin Ichthyosis. At the end of the day, it doesn’t change anything for us. As Catholics, we are open to life. This doesn’t mean that weighing decisions about whether to have more kids or not comes lightly, it just means that we are committed to bringing those kids into this world if a pregnancy does occur. So, I want to share a little about WHY we chose to get an amniocentesis and find out if this baby has the same skin condition as Olivia.

When I was pregnant with Oscar and we were discussing what genetic testing we would opt-in for, we weren’t really sure what to do. We weren’t ever going to end a pregnancy, so did it really matter? Our midwife said something that has stuck with me ever since: “You could get the genetic testing done just so that people have time to get over it.” What she meant by that is that if we have that knowledge than we can choose how to educate ourselves and how to educate family and friends on how to support us. Now that we’ve been surprised at a birth with very little answers, I can’t agree more with what that midwife said. I knew that if we could find out if this baby had the same condition as Olivia that there is a lot that we could do to prepare our families, our home; and maybe most importantly, the hospital staff, doctors, and nurses in Labor and Delivery and in the NICU. We know what adhesives work and which ones don’t work at securing PICC lines, IVs, and an intubation tube. We know that Aquaphor was really hard to get at first when Olivia was transferred to UCSF because the NICU didn’t regularly store big tubs of it. As parents, we could come in with a lot of first hand experience. We wouldn’t have to hear, “we are figuring this out along with you.” We could make much better informed decisions. I knew that I wanted to know as early as possible if this baby had the same condition as Olivia, not because it would change anything about how I felt about the baby or my excitement for adding a little sibling to this family, but because it would provide the best outcomes for the baby.

This is part of life with a rare genetic disorder in the family: you learn how to let go of plans. You learn how unpredictable and precious life is. You learn how little control any of us really have in life. You learn that there is a thin veil between life and death. You start to get really comfortable in that in between space. And most of all, you get a perspective on how petty and ego-centric so much of the world is. You learn that so little matters when you’ve come face-to-face with a life slipping – or almost slipping – before your eyes. It’s hard to keep that perspective sometimes. It’s easy to fall back into the way of society and the rat race for comfortable living. It’s easy to rationalize that I can plan everything out and it will all go as planned. But it doesn’t take much to pull me back out of it all. It’s often as simple as a too hot car interior or planning a weekend based on access to a bathtub. Or going in for an amniocentesis in the middle of global pandemic. We can plan as best as possible, but we always have to be ready to pivot.

The day we received the results from the amniocentesis we were more jittery to find out the sex of the baby. The focus on whether the baby had Harlequin Ichthyosis or not had dissipated and shifted to if it was a boy or a girl. When the genetic counselor called me she shared that this baby does not have Harlequin Ichthyosis and I cut her off and quickly asked, “Is it a boy or a girl?” She laughed and told me that somehow that page of the paperwork didn’t scan correctly so they had to re-run the test. I ended up finding out that this baby was a girl through an ultrasound, like most people, and not a sophisticated genetic test. What what is that I said? We can plan as best as possible, but we always have to be ready to pivot.

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Holy Saturday in Pandemic Lent

Every Lent ends the same way. The altar is stripped. The tabernacle is empty and left open. Jesus is not physically in our churches. It’s always jarring and humbling. This year though, having a picture of it sent through email by a priest made it that much more shocking. I shuttered when I opened this picture of St Patrick Catholic Church in Nashville. This particular parish has been a breath of fresh air many Sundays while we have lived here. It has always been a reverent experience. That’s what makes this scene feel so meaningful. For some, this pandemic has made it easier to focus on Lent, but not for me. I’ve been distracted and things have been disordered and mis-prioritized without the order of the liturgy. I cherish the rhythm of the liturgical year and this year I’m reminded deeply why that is. Tomorrow, we will claim His resurrection. But not tonight. Not yet. Tonight we find stillness in the humility of His death. We are shuttered and shocked to see the altar stripped bare and the tabernacle empty and open. Thank God for tomorrow.

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Taking Back the Pro Life Movement

Before writing this I asked for the guidance of the Holy Spirit. I crossed myself and took a deep breath and asked Our Lady of Guadalupe and Saint Oscar Romero to pray for me. As a Catholic, it’s helpful to know that I am not alone in my struggle for justice. There are thousands of saints that have walked this earth that dedicated their life to a cause that would now fall under “social justice.” Many of those saints lost their lives because of that struggle, that fight for justice. The Internet is a weird space to figure out where you belong. It’s a new frontier – still after all of these years – and we are all trying to figure out who we are in this space and how we want to be represented. And it’s a space for the fight for social justice to continue, but there is no roadmap on the right way to do it. I’ve largely abandoned Facebook because of the incessant fighting and chest puffing and chest pounding that became the norm of any sort of discussion on that platform. And I found my happy place in Instagram. Driven by images and short narrative it was a medium that felt more creative and meaningful, but my voice was lacking. I have found myself floundering – drowning really – in my own thoughts and convictions about justice and I have been wanting to write boldly about these ideas for a long time. So here I am, wobbly and uneasy, stepping back into the social justice Internet game. It’s just taken a lot of energy to muster the courage to sit down and write this. It will take another gallon of courage to post it, too. But what I am left sitting with each day is that I see these conversations all over the Internet and there are pieces of these discussions and discourses (and Facebook fights) that are missing some key elements. 

It’s so easy to parrot what we hear other people say and accept it as truth or accept it as fake news or propaganda depending on the political bend we assume it takes. We have forgotten where opinion lays in the in between – in the gray area – and we have bought into the divisions. My hope is not to create a deeper canyon, but to ask that we all start thinking more critically, more skeptically, and start the road to expecting more intellectually out of each other. I learned a lot from my dad about how to talk politics and hard issues with people that you don’t agree with. He and I both get heated and animated when talking about these issues and it stresses my sister out. Even though we sometimes (ahem okay more than sometimes) disagree on how things are said or what stance the other person is taking, we can always end the conversation laughing and moving on and still accepting and giving love to the other person. This is a lot easier to do, however, when both parties understand the rules and enter the conversation with the same mindset. The Internet fades and distorts that. We often don’t see the other person as an equal and we don’t often see the exercise as just that – an exercise or an opportunity to stretch and flex in order to have a more articulate argument later. We’ve lost the patience for the slow burn of a playful debate after dinner and over some drinks. We want the other person’s mind to be changed in the immediate and we want it to be public and grandiose. 

That is my very meandering way of saying this is going to be long and I hope that you will journey with me. When you feel your gut push back or your cheeks turn red, I ask that you take a deep breath and question where that is coming from and continue to read. I ask you to continue to read because it’s okay to disagree and not know why. It’s okay to disagree and want to turn away and roll eyes. But we aren’t going to get anywhere if we all keep avoiding each other. So, after you have read this whole piece I invite you to ask my questions. Pretend we are in a classroom together and you are just trying to learn more. 

Okay, enough of a build up and let us dive into the topic that is weighing heavy on my mind as of late. The term “pro-life” is a term that is deeply political, but I have come to learn that it means different things to different people and that is becoming problematic in our current political atmosphere. For many, when they hear the term “pro-life” they automatically assume anti-abortion and for a long time that has been widely accepted as the definition. However, especially if you are Catholic, that is only one pillar in the pro-life worldview. According the the US Conference of Catholic Bishops, as listed under Pro-Life Issues on their website here, abortion is just one of many issues that fall in this category, including: African Americans/Culture of Life, Assisted Suicide, Capital Punishment, Human Cloning, Conscience Rights, Contraception, Disabilities, Embryo/Fetal Research, End of Life Issues/Euthanasia, Health Care, IVF/Reproductive Technology, International Issues, Morning After Pill, Partial-Birth Abortion, Post Abortion Healing, Roe v. Wade, RU-486, Stem Cell Research, Unborn Victims of Violence Act, Women and the Culture of Life, and Youth. 

Whew. That is quite the list, right? Some of these can certainly be grouped together as abortion-related and these activities make up a good portion of this list. However, when we are talking “pro-life” issues, as Catholics we shouldn’t just be talking about abortion. In fact, the essence of being pro-life is accepting and protecting the dignity of each person as a beloved child of God. Being pro-life means that God’s love, compassion, and grace is offered to each individual simply based on that person being a person, a human, an individual. And in turn, as followers of Christ, it is our duty to also show love, compassion, and grace to each individual simply based on that person being a person, a human, an individual. Doesn’t that sound nice? If we could all just do this, wouldn’t so many problems be solved? None of us are naive enough to accept it that simply, though, right? Anyone who has had to share small quarters with another individual, or drive down a busy highway, or has worked in customer service knows how quickly love, compassion, and grace can be hard to come by in the day-to-day mundane tasks of life. We were never promised easy. In fact, we were told repeatedly that this life following Jesus would be hard and arduous and persecuted. Many faithful Catholics have been willing to put our necks out to fight for unborn children and their mothers, but how many truly understand all of the issues that encapsulates all of the issues that make up the pro-life platform as curated by the US Conference of Catholic Bishops?  

I am deeply concerned how the term “pro-life” has been co-opted by the anti-abortion movement without much regard for the other issues at hand. I am even more concerned how many Christians are willing to look away or accept behavior from people, such as President Trump and Vice President Pence, and when questioned respond with a form of pleasantry such as “at least he is pro-life” or claiming that the duo has done a lot for the pro-life movement. As faithful Catholics, we are called to more than concern regarding abortion. We are called to protect the dignity of all persons. Full stop. Even throwing out the personal dealings of President Trump, this administration is not pro-life in the Catholic understanding. I am not sure if there has ever been an administration in the history of the United States that could actually claim that legacy. Recently, the current administration has decided to resume federal executions. This is a huge loss for the pro-life movement. The hard reality of being pro-life is that we, just as God does, hold the life of an unborn child to the same love, compassion, and respect as we do the inmate sitting on death row. As Saint Pope John Paul II wrote in Evangelium Vitae, “The dignity of human life must never be taken away, even in the case of someone who has done great evil. Modern society has the means of protecting itself, without definitively denying criminals the chance to reform.” As Catholics, we don’t get to judge for ourselves who is and isn’t worthy of human dignity – regardless of legality of one’s actions. Which brings me to another big scar on the current administration’s pro-life report card: the treatment of migrants and refugees at the border. If, as Catholics, we accept that even those on death row deserve dignity, then we, as Catholics, must also accept that individuals seeking entrance into the United States – regardless of legality of entry – also deserve dignity, honor, respect. From what we know about what is going on at the border and what we are hearing coming out of this administration’s mouths, the crisis and chaos at the border is not being dealt with in a pro-life manner. 

My hope is that as we enter into a new election cycle in 2020 that we all have a more full understanding of Church teaching. My hope is that we don’t allow our allegiance to one issue blind us from fully realizing our call as Christians. We must stand up and fight for justice for all of God’s people, not just the ones that it is easy for us to fight for. If we are voting on a pro-life platform only, we will be hard pressed to find a candidate that will fully fulfill that role. We must use our power, through activities such as voting and freedom of speech, to protect the sanctity of all life. Despite what many anti-abortion folks will tell you, that might mean considering a candidate that won’t do much to abolish abortion as we know it, but might do a heck of a lot to protect the rights and dignity of other groups of people. I know this will be scandalous for many and outrageous to some, but maybe if we all take a deep breath and say a prayer for those with whom we disagree we can seek to understand one another in a more meaningful way. There is a bridge across this canyon and I am willing to help build it.

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Know what you know well

What’s one topic or theme you feel like you know really well, but maybe know about this topic so well that you could easily talk about it for 10 to 15 minutes with evidence to back it up. When I say evidence I mean, you can pull some solid facts and background information about it. This isn’t just an opinion about something, but a topic you can actually answer the *whys* and *hows* behind. Okay, do you have a topic (or a few in mind)? The topic doesn’t have to be anything you have formal education around, but maybe it’s something you like to read about or something you have done in the past. It’s probably something you are passionate about – something you find exciting to talk about.

What if these were the only topics we were allowed to comment or engage in on social media? Other people could ask questions and read the discourse, but only people with immediate experience or substantial knowledge could participate. My hunch is that we would probably learn a lot more and maybe get a little less mad at strangers on the Internet. Obviously, we can’t impose these types of things on others, but we can challenge ourselves. We can rise to the challenge and seek to learn and understand and assume that maybe we don’t know everything about every topic. And that’s okay because there’s probably something we have to offer to someone else. We can refrain from uncharitable comments and snarky remarks. We can certainly vow to not purposefully stoke a fire just for enjoyment. The Internet and comment sections and social media have made us all believe that we can be experts in just about anything. And the Internet certainly provides some great resources. But it’s a false confidence. And a false confidence leads to an un-empathetic ear.

For those that have taken the time and energy to invest in a study or a pastime probably has an emotional investment in that thing. We should of course listen and engage with empathy and humility, right? So let’s try to model this by remembering we don’t get to claim space wherever we want. Our age, our race, our educational background, our experiences have shaped us to be experts in certain things, which means we can’t be experts in it all. Let us seek out the experts, even if our assumed opinions tell us we surely disagree, and try to take a back sit and listen with grace. That is my challenge to myself and to you. Actually, I triple dog dare you.

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And I don’t pretend to know what you know…

A fact to agree on before moving forward: there is an influx of people from Central America seeking entry into the United States. It has become a hot button topic and one that is seeped in emotional response, which doesn’t always translate to logical and reasonable discourse. It’s a topic that I have to be careful how I tread because I recognize how close I am to the whole thing. See, my family came to this country as asylum seekers. It is largely because of this familial history that I felt compelled to dedicate the privilege of a college education to US-Central American relations and the role of the public sector in society. And there is a large part of this “issue” that doesn’t seem to be understood: it’s a bipartisan mess. Although I am pretty center in my politics, I tend to lean more left than right. And I am here to tell you that neither Democrats nor Republicans have gotten the Central American question right. The United States has exploited Central American countries for economic gain and intervened in Central American politics way back when the countries were tied under a single federation. In fact, this was happening before those countries were even separated from Spain. And this meddling has always been bi-partisan. The United States has gone to great lengths to ensure that our neighbors to the south are positioned to perpetuate American exceptionalism – interference disguised as rescuing and helping (i.e. spreading democracy and sending aid) with the goal of controlling and having power over these countries. 

I don’t claim to know your position or your reasoning on immigration, border security, economic policy, trade, or capitalism. What I do know, is what I know from familial history. What I do know is what I know from visiting, working, and studying in Central America. What I do know is that the United States has done a lot to influence Central America for US economic gain and it has left most of Central America dependent and vulnerable.  To me, this isn’t just about a human emotional response or a wall or the “right” way to immigrate. This is a call to my fellow citizens of the United States to recognize the complexity of our politics, our economic policies, and our foreign aid practices. This is a call to recognize how our consuming of drugs, clothes, and food has corrupted communities and destroyed ecosystems. We need to recognize that it’s not just the role that our country has played in the current state of countries in Central America, but it’s our individual actions that have played a part, too. And it’s our individual actions that can rectify these sins. Vote. Donate. Sign petitions. Call your representatives. Volunteer. Do all of the things. But remember, this is more than immigration. This is demanding humane and fair international relations, trade policies, business practices, environmental protections, and foreign aid practices. 

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Embracing Weakness to find Healing

#Ichthyosisawareness month is almost over and I didn’t do all the posts that I had plan. But I think this is where I want to end my thoughts for this month regarding a genetic skin condition that blindsided us and hurled our whole family far away from where we thought we should be.

I’m starting to learn that I was letting the fear from other families with ichthyosis cloud my own intuition and judgement. I feel like I’m finally coming out of the fog and realizing that Olivia is not nearly as fragile as I was made to believe. Even though our dermatology team told me from early on that she would be able to do pretty much anything a typical kid could, I had a hard time wrapping my head around it. But it’s true. It’s just on her own timeline. Even though we make take a few extra precautions, it does not have to be as scary and extreme as I was made to believe. But of course, I can say this now. And as in now, I mean this week. Or even today.

You know that feeling when you are recovering from an illness and that taste of feeling refreshed makes you realize how awful you felt before? I can relate to this most when a hangover finally wears off 😬 or when I was in denial I had mastitis and I finally took the antibiotics and felt like a human again. Well, for me this goes for my mental health, too. More and more research and studies are coming out linking Post Traumatic Stress Disorder (PTSD) to parents that have experienced a health crisis with a child. And that was the validity I needed that this life with ichthyosis isn’t just “hard.” There has been severe trauma that we are forced to look at face to face and catches us by surprise. An example of this is watching a sci-fi show in which there is a scene where a baby is born with a severe visual defect and is killed immediately upon birth. It took our breath away and caused a river of tears. We paused the show momentarily, only to return to finish it and go on with life. At least we have one another, yes, but it’s hard to help people heal when you still have a lot of healing work that you need to do.

Just this week I’m realizing how depressed I was and what a dark place I was in the last few months. It’s easier for me to run full speed ahead when I can’t figure out what to “fix.” This time around, every little task made me feel like this hole I was in was magically getting deeper and hopelessness was starting to creep in. For anyone who has experienced depression like this, you might be like me and can rationalize the heck out of it, but drive yourself crazy that you still don’t feel right. I don’t know what snapped me out of it this time. I know it wasn’t just one thing. Being on vacation for a week with the family and seeing my mom, sister, and aunts definitely helped. I also have been running again, I was able to receive funding for respite care, and I set up spiritual direction with a priest I really look up to. But reading Shannon Evan’s book Embracing Weakness: The Unlikely Secret to Changing the World gave me the little push that I needed to see a way out. I highly recommend spending the $11 to read it! Since coming back from vacation, I don’t feel like I’m under an avalanche of housework and medical appointments even though none of that has decreased. It just feels manageable.

And that’s how I know I wasn’t okay. Now I see that I was trying to shove my weaknesses and my hurt and my trauma under the rug. I hoped that if I just kept doing everything I needed to do, this would eventually pass. What I really needed was to validate that this hard stuff that I felt was leading me to be a person I never wanted to be, could be places of growth that would help me be more empathetic, more patient, and more loving towards others. Because surely I’m not the only one who feels this way and maybe by sharing this, someone else can start to see that they aren’t the only one who feels this way either. And just like I take extra precautions to protect Olivia and keep her safe, I can take some extra precautions with myself, too. And in the end, my mental health isn’t just about me feeling better. It’s about me being in a better and stronger position to shower my husband and kids and friends and family with the love and support they need right where they are.

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Ichthyosis Awareness: Compromising for What Works

It’s Ichthyosis Awareness month so I’m dedicating my posts this month to advocating for those with ichthyosis and sharing a little bit of our story.

Today, I’m talking about skin care. All of the well meaning people in this world like to suggest what we could use on Olivia’s skin and try to hide their horror when they hear that we REGULARLY use bleach and petroleum based products. Here’s the deal: I am a pretty crunchy mama so when I heard these things I searched desperately for “natural” alternatives. Surely other products can work just as well. Surely people are just blindly listening to medical professionals without doing much personal research. Surely there are other options. Trial after trial, especially when Olivia’s skin would get really dry or really tight or really flaky, I would find myself back ro using Aquaphor instead of, or in addition to, Shea butter or organic cold pressed coconut, safflower, and avocado oils.

The reality is that Aquaphor, a product I only knew to use to heal tattoos, is one of the only things that helps alleviate itching. And the fact that it helps with itchiness AND it can help fight bacteria and create a barrier against infection is why I still use it. Even though it leaves grease stains on my clothes, destroys elastic (which is why I use disposable diapers more often that cloth diapers, a very different routine for me when compared to diapering with Oscar), and leaves gunk in my washer (among other minor annoyances), but the bottom line is this: it brings comfort to Olivia. It just works in a way that other emollients don’t work. At the end of the day, any mother is going to do what is best for their kiddo. Bottom line. Full stop. End of story.

So, yes, we put in a cap full of bleach in a bathtub full of water every now and again to kill off any lingering germs after visiting somewhere that was full of people, animals, or just wasn’t very clean. And yes, I use petroleum based products, and disposable diapers, and a cream that I have to wear gloves when I apply it to Olivia’s skin because this routine is what works for her skin right now. It might not work later. And it might not work for someone else’s skin who is affected with ichthyosis. This ability to adapt and respond to needs and to find compromises is what we, as parents, do day in and day out – parents with kids with different needs just find themselves going a little further, but you would do it, too, if you were in our shoes. Bottom line. Full stop. End of story.

I don’t want to end this post without sharing appreciation for Bieresdorf, the parent company of Aquaphor products, because thanks to them folks affected by ichthyosis can receive a FREE case of product once a quarter after sending a letter from a dermatologist. That’s a huge savings for our family. Any company willing to donate product directly to those that NEED it, instead of gauging our pockets deserves recognition.