Author: Natalie

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.

This month I will be sharing a few posts related to ichthyosis with the hope to advocate for acceptance and understanding of people with visible differences, support FIRST Foundation and the possibility of improved treatments and cures, and to spread awareness about this rare genetic skin condition.

Ichthyosis. How do you spell that? How do you say that? I say ICK-THEE-OH-SIS. I’ve heard it say other ways, too. For the sake of simplicity I often tell people that Olivia has a genetic skin condition that makes her skin grow really fast and she can’t slough it on her own like we can. It works for kids and adults alike so I stick with it. But it’s not the whole story and it is an oversimplification of the disorder.

There are about 20 different types of ichthyosis and although there are similarities across the conditions, there are a lot of differences, too. Some are linked to the x-chromosome, some, like Olivia’s type, are double recessive, and still some others are dominant. Never did I realize that those Putnam squares and pea varieties that I learned about in Biology would come in handy! Ichthyosis is so rare that there is still a lot we just don’t know. For example, Olivia has Harlequin Ichthyosis – a phenotype that presents with thick white diamond shaped scales at birth. Olivia received two different gene variations. One from me. One from Casey. And since we aren’t related the mutations were different. One of the variations had been previously recorded in someone with Harlequin ichthyosis… and the other had not. Why is this important? Since the mutations are different and we don’t know enough about this particular part of DNA, we don’t know how else these variations might affect Olivia. Additionally, the two mutations that Olivia has are also different than the two genetic mutations or variations that someone else with Harlequin Ichthyosis might have. So even though someone else might have Harlequin Ichthyosis, that person and Olivia might have different challenges. I found myself saying, “genetics are weird.” on a regular basis.

What is common among the ichthyosis population, however, is that the largest organ – skin – is compromised. Your skin is the first defense for your immune system. Your skin, and it’s ability to sweat, helps you control your body temperature so you don’t overheat. Your skin retains moisture, which helps keep your whole body hydrated. When your skin is compromised, as in the case of folks with ichthyosis, you are more susceptible to infections, overheating (which can also happen if you get too cold as your body goes into overdrive trying to warm you up), and dehydration.

That’s just the tip of the iceberg of the world with ichthyosis and for most people it’s more than enough information to grasp all they need to know. But there is more because with any congenital condition, there is almost always more. What is important to know about ichthyosis is that it is NOT contagious. And although your skin provides very important functions for your body, people with ichthyosis (and their loved ones) don’t have to live constrained by fear. We are cautious, yes. Of course. But, it is my goal to equip Olivia with the tools necessary so that she feels confident enough to pursue her interests and passions. This may mean that we get creative, that we stay flexible, and we adapt – but is that any different than any other family?

During the month of May, please follow along as I share about #ichthyosisawareness and consider donating to FIRST Foundation to support their work “to improve lives and seek cures for those affected by ichthyosis and related skin types.”

“There is a joy that is affliction; misery is hidden within it. There is a misery that is profit; it is a fountain of joys in the new world.” – St. Ephrem of Syria⚡️

The miscarriage I shared about hurled me forward into finally addressing two things: seeking medical attention for some of my health concerns and setting up spiritual direction. And then. And then my husband broke his collar bone during a mountain bike race. And it was in the midst of this that I knew that the theme of this Lent was, “Jesus, I trust in you.” Because I absolutely was questioning that phrase. The phrase had come to me late last week and I knew at that moment that there in that phrase was where my Lent was supposed to be.

In my first, very imperfect, spiritual direction meeting , with two runny-nosed children, the priest offered some insight about prayer: to focus on ONE thing per liturgical season. Pray the rosary every day during lent, the Divine Mercy chaplet during Easter, and so on. And this is exactly what I needed to hear: it’s okay to need an end point to a prayer practice. I knew it was okay for prayer to be small, and I knew it was okay for the daily practice to be simple. I knew it was okay to be patient when a day or two (or three) is skipped. Just start over and be kind to yourself – but I find freedom in the idea of a prayer practice being temporary. I can try all of the exciting and interesting practices of the Catholic Church, but I don’t have to do it all at once. And how much more rich if my current practice can be bundled with the larger theme of the liturgical season? So, since my Lenten fasts got totally upended by a miscarriage and a broken collar bone, my new Lenten practice has shifted. My body is suffering and mourning a lost baby and I’ve come to accept that that is in and of itself is a Lenten sacrifice. I’m still fasting from sugary treats in moments of stress (like when I really want a vanilla latte), but I’m not denying myself all treats because my body needs some extra love right now. And the daily prayer practice for the rest of Lent will be repeating, “Jesus, I trust in you.” Maybe by Easter I will be ready for that Divine Mercy chaplet.

Part 1: “Happiness can be found in the darkest of times if one only remembers to turn on the light.” – Dumbledore⚡️

Oof, Lent, am I right? Merely 4 days into it and the day after Casey’s 30th birthday I had a miscarriage. It was a very unexpected and hard to accept pregnancy and just a few weeks after finding out, freaking out, and then coming to peace and entering into excitement about adding another baby to our family, I miscarried. It’s taken me some time to decide to share this. The only reason I think I was able to stumble out of that fog was because I knew I wasn’t alone in how I was feeling. So many women in the Catholic social media realm have been so incredibly honest and open about miscarriage. It’s far more common than most people realize, yet it’s hidden away and rarely talked about. Women are losing babies and silently mourning and suffering the loss. I am forever grateful for the brave women before me that have shared honestly and openly because it allowed for me to reconcile my feelings and my thoughts and move into some real authentic healing – physical and emotional healing that I have been putting off for far too long. Here I am today grateful to the person that I carried for a few weeks that is already a saint in heaven. This little person forced me to break open my heart and ego one more time when I thought one more thing would break me beyond repair. Having given birth before, so many of the signs were familiar. So many of the feelings and moments felt familiar, just not as extreme, but the transitions were the same for me. The hardest part was the fact that the following week my body felt the way my body felt a few weeks after giving birth: the weakness, the fatigue, and the cramping. This time it was a constant dull reminder that my body failed me. My heart still feels heavy and there is a sadness there, but the days are getting easier and lighter as my body starts to feel like mine again. This veil between life and death and this disruption of any grasp of stability seems to continue on this three month cycle. I’ve seemingly lost my trust in God. And yet, here I am, turning again to Him because I don’t know where else to turn.

Yesterday was the first Feast of Saint Oscar Romero since his canonization in October. It wasn’t until yesterday that I realized how much this particular saint has been following me. Some people talk about being stalked by saints and today I realized just how long Saint Oscar Romero has been hiding in plain sight. It’s largely because of Oscar Romero that I reverted back to the Catholic faith. I was studying global development in college and desperately trying to find the intersection of my very vague Christian faith and my firm belief that we, as humans, are called to care for others. I came up disappointed in so many big Christian institutions that were more concerned with trendy pastors and feeling good than strong theological standing and logical philosophies. During this time I somehow stumbled upon Liberation Theology and in through that reading Oscar Romero found me. He found me and invited me back into the Catholic Church. Through him I found the revolutionaries that I was longing to be inspired by. Through him I learned how complex the role of the papacy is – something I should really write another post about, but in short: Saint JP II highly criticized Romero and the Catholic Church in Central America in the fear of communism and socialism, but through the Church’s wisdom the impact of this work has not been forgotten.

Then in graduate school, I had the opportunity to travel and work in El Salvador with a community called Ciudad Romero in a whole region that had a personal devotion to this saint because of the work he directly did to protect El Pueblo from the corruption of the Salvadoran government of his time. The very work that would have him killed while serving mass, making him a martyr of the faith. Saint Oscar Romero boldly proclaimed Truth and was killed for it. And he knew that was a threat all along when he prophesied, “If I am killed, I shall rise again in the Salvadoran people.” He carried a cross he did not want to pick up, but he was loyal to the people until the end. His life embodied the call so many of us feel for social justice and protecting the vulnerable, the marginalized, and the disenfranchised. His legacy reminds us that this is a mission of the Catholic Church because it was Jesus’ mission first.

Oscar was one of the only male names Casey and I could agree on when I was pregnant with our first. We had so many eye rolls as we went back and forth with names. But in this name for our first son we find a martyr for the faith from my beloved Central America. A reminder of my ancestors and the history that has brought us here to where we are today. Every time we say Oscar’s name we are calling on the intercession of this saint that did so much for a region that gets ignored and vilified – especially in this current immigration political game. What a true gift the saints are to our lives, especially the ones that seek us out.

As I was walking through the hospital yesterday after one of Olivia’s routine appointments, I saw a sign for Ash Wednesday services. The memory of last Ash Wednesday came rushing back. I was in a hospital. We still didn’t know when Olivia was coming home. My body was still healing from her birth. My spirit was pushing away the trauma of her delivery – a trauma that wouldn’t have happened if I had had a doctor that hadn’t panicked- probably to keep the momentum of my adrenaline. It’s a trauma I still hold, buried deep down. A trauma that I know needs healing, but to address it means I have to re-live it in a way that I just don’t have the energy to do. A trauma that has very little to do with Olivia’s diagnosis and everything to do with an unplanned hospital birth with a doctor that panicked. A doctor that did not listen to my body. A doctor that made me question myself. A doctor that embodied the very reason I had sought out a home birth in the first place – and why many women choose home birth over hospital birth.

Last Ash Wednesday I attended a service in a conference room in a university hospital. Casey and Oscar had briefly gone home. It was Valentine’s Day and Casey sent me pictures of Oscar naked playing on Carmel Beach with a heart drawn in the sand. I thought a lot about death that day. Actually, last Lent I thought about death a lot and I’m still thinking about death. I’m thinking about that thin veil between life and death. The thin veil that is ever present in any intensive care unit. That reality is one that I have become familiar with in the last year and a half: “From dust you came, to dust you shall return.” And in that time I’ve also come to realize that our Western world has a very disconnected understanding of death. We fear death. We fear our death and we fear the death of those close to us. We leave death behind closed doors so that none of us have to experience it until we have to. And it’s a shame because if we are truly the Faithful people we claim to be than we shouldn’t have this fear of death because it isn’t unknown! We have been told of the promises of the Resurrection. But we have little faith, don’t we?

Having a mom who is an oncology nurse, I always heard her talk naturally about death. I heard stories about how it could be beautiful and peaceful. Stories about how at the end of life people never seemed to say they wish they worked more. But they often wished they had more time with loved ones. And, it’s true, isn’t it that accounts of people dying and then coming back to life always seem to be that whatever is in the beyond isn’t half bad. In the last year I’ve been thinking about how much our society misses out on by shutting our eyes to death. We force death behind closed doors to protect ourselves, but then when it’s our turn we are fearful of the unknown because we have never seen anyone else go through it. We won’t even talk about it. If we did talk about it and we did reflect upon it, maybe we would be better able to live. The Catholic faith is full of traditions based around death because much of the rest of the world sees and experiences death throughout a lifetime in a very real way. A way that most of us in the US have had the privilege to be shielded from.

Our fear is rooted in a lack of faith. A lack of faith that the 40 days of Lent bring to the forefront of our minds. So, as I figure out what my Lenten practice is going to be, I find myself trying to pinpoint where in my life I am lacking faith. Where in my life am I denying Christ three times? I know it’s my little faith that is keeping me from confronting the trauma that I keep buried because I don’t trust that anything will come of it. It’s my little faith that fills me with anxiety about money and the future. It’s my little faith that wants to take the map and stake out the route myself. When will I learn? Maybe this Lent.

P.S. If you are interested in getting more comfortable talking about and processing death there are some documentaries on Netflix about palliative care and death that may be a good introduction. One that I watched was called “End Game” – it’s short and well done.

P.P.S One goal I have this Lent is to read through my medical records from Olivia’s birth and craft a letter to the labor and delivery department of the hospital where Olivia was born. This is how I deal with trauma – by voicing the injustice and asking for change. I promise I’m not letting it stay buried.

An Instagram friend brought it to my attention that this week is Feeding Tube Awareness Week si folks are sharing their stories and experiences with feeding tubes.

Feeding tubes are common for those affected with ichthyosis because the condition causes increased skin production which takes energy, which takes calories. Lots and lots of calories. Feeding is what kept us in the NICU the last few weeks so we were sent home with a nasogastric (NG) tube with the hope of avoiding a feeding tube that would have to be surgically placed. Our nurses showed us how to measure the length of the tube from her nose, to her ear, to the middle of her chest. We learned how to make sure that the tube was in her stomach and not her lungs. We learned how to insert the tube through her nose and thread it down into her stomach. We learned how to secure the tube to her cheek with a collection of adhesives to withstand the Aquaphor and the coconut oil, and to protect the fragility of her skin.

I ended up weaning Olivia from the tube myself because it was a version of what I can only imagine would be hell. I was having to re-insert and re-secure her tube over, and over, and over again. Sometimes her passageways were so tired from all of the threading that we couldn’t get it through at all. I was up at all hours of the night attending to beeps and clogs and thrown up formula. I was pumping and measuring and mixing. And that stupid tube would slip right out of its dressing, sometimes thanks to Olivia pulling it out.

It was a hell for me because Olivia hated it even more than I did. It was exhausting because measuring and cutting and taping and fighting insurance on ordering particular adhesives created a never ending list of things I had to do TO my baby. It’s a tough thing to grapple with because the technology saved and sustained Olivia’s life. She was growing and tolerating most of her feeds. Without a feeding tube, I’m not sure how long Olivia would have stayed with us. But I also know that babies eat when they are motivated, and sometimes you have to just give them that chance to feel hungry and eat. But feeding tubes also provide an opportunity to pack in some extra calories when their bodies are too tired to do the work. And here we are, with no feeding tube and teeth coming in and an appetite that is nothing short of impressive!

If you see a family out and about and you feel compelled to do a nice deed for a child with a physical difference or special needs, look around first. Are there siblings around, too? Offer a free cookie. A high five. A comment about how cool they are. Any gesture showing them that they are important and noticeable, too, makes a difference.

Today we had some time in between Olivia’s appointments so I decided against calling in a to-go order for the pho that I had been craving all week and took both kids into the restaurant with me. Going on this impromptu lunch date with Oscar was actually selfish at first. The idea of being alone with both kids in a busy restaurant at peak lunch hour outweighed trying to juggle both kids, a dog, and pho in the car. The place was packed but we found a little spot where I could place Olivia’s car seat somewhat out of the way. As Oscar and I started eating and Olivia played in her car seat (only screaming for more tofu occasionally), I thought about what I could do to make lunch special for him. I didn’t do anything noteworthy by any means, but his behavior was stellar because I was spending normal quality time with him. He wasn’t vying for my attention. He had it.

During Olivia’s second appointment Oscar was with his Marmee so it was just me, Olivia, and the occupational therapists. We were talking about how hard it can be for siblings of children with special needs. Olivia’s OT was sharing about a situation where the older brother has Downs Syndrome and the little brother does not. The other day the older brother got a free cookie. And nothing *again* for the younger brother. It happened to us today at the clinic where Olivia is very well known, loved, and fought over by nurses and staff. But it’s Oscar’s doctor’s office, too. That feeling as a parent of seeing one kid unintentionally snuffed simply because the other kid looks different is complicated, but it just ultimately feels sucky.

It feels sucky because the siblings hold a lot of silent responsibility of trying to protect their siblings. It feels sucky because siblings didn’t get to choose to have any of this. It feels sucky because the siblings are often the MVPs when it comes to flexibility, kindness, patience, and unconditional love.

We deal with stares and rude people occasionally, but most of the time people want to interact with her. Comments about her big blue eyes or questions about her skin or people just reacting to her social personality. We get a lot of attention as a family, but often times people are so focused on Olivia and making her (and us) feel special and accepted that Oscar gets ignored. Maybe I would feel differently if he was a wallflower (I doubt it). I just see Oscar deflate a little each time it happens and it breaks my heart. So, please, for this mama to the world: give both my kids a little love. It lifts all of our spirits.