Mindful Wanderings, Personal

What the Internet Has Taught Me About Grief and Mourning

In a conversation with Casey, I had a realization recently: as much as I have become weary of the state of social media and the Internet at large right now, the reality is that social media (specifically Instagram and blogs) has provided me with an opportunity for kinship in some of my loneliest and most difficult times. 

This all came flooding to the forefront yesterday when I listened to a podcast conversation between Leticia Adams and Laura Kelly Fanucci about grief and mourning. I have never met either woman in real life, but I have learned so much from them. Through Instagram I’ve gotten to exchange personal messages with them as well. Both Leticia and Laura lost children and although they lost children under different circumstances, they have taught me immensely about grief. I have learned that we feel grief and can practice mourning not just for people, but also for events or plans go awry. Leticia taught me that many of us are feeling grief over all the cancelled plans and upheaval we have felt from living through this pandemic. It was a social worker while Olivia was in the NICU that allowed me to mourn the postpartum period that I had to let go of when Olivia was in the NICU. Instead of physical rest and snuggles with a newborn, I was thrust into chaos of an intensive care unit advocating for a very sick baby with a tired and healing body.

I recently shared with Laura that it was her writing through losing her twin girls days after birth that helped me enter into grief and mourning when Olivia was born. See, as I’ve shared before, we were initially told that Olivia likely would not survive longer than a month. The information we were given that first night didn’t give me much hope to think she would live through the night, let alone the first few days. In our kitchen that night after we finally got home without a new baby in tow all I could muster to mind were Laura’s words about holiness and grace and mercy and how that is all intertwined and made clear when you see Heaven so close to Earth. See, in our Catholic tradition we believe these innocent baptized souls become saints and enter Heaven. Her words helped me better see past the current situation. Through these women I saw what life can look like on the other side of the pit of despair that you sometimes find yourself lingering. 

One poignant moment in their conversation is when they share a few moments of absurdity and mundane that they found themselves wading through in the days after death. The inappropriate laughing, the misplaced jokes. The person gingerly trying to break news to you that you brace yourself for just to find yourself incredibly underwhelmed by what they had to share. For me, that particular moment, was when Olivia was finally starting recover from a really bad infection that she almost died from and the new resident on rotation sat me down with some news. I was preparing myself for the worst and found myself dumbfounded when all she had to share was that Olivia was likely to lose a toe. I remember thinking, “All of this fanfare cannot just be about a toe?” But now looking back on it, I get it. Every bit of news about prognosis can hit differently based on a loved one’s own hope for the future. I knew at that time that she would still be able to walk, and run, and jump without a toe or two. But not everyone can see that in the moment, right? That resident was trying to be caring and empathetic as a good doctor should be! But in the moment of my own grief, that single little toe felt so inconsequential. My daughter is alive! She is going to make it through this infection. She is going to live longer than we expected! We will probably get to take her home. 

There is no textbook way to grieve and mourn. And as Leticia and Laura have taught me: the more that we can all share honestly and openly about the times we have grieved the more we can normalize it so that others can shamelessly enter into it and experience God’s grace on the other side. This is the same reason I shared openly about my miscarriage. It’s why I think it’s absolutely beautiful and brave that Chrissy Teigen shared about the loss of her baby. As Laura and Leticia have taught me: if we can stop trying to turn away from the hard mucky stuff and instead sit in it maybe we can better sit alongside one another in the uncomfortable hard places. Maybe we can be better neighbors, friends, and family members if we are willing to work through the hard and give one another hope for what life can look like on the other side. And the fact of the matter is sometimes it’s easier to accept these life lessons from complete strangers baring their hearts in the Internet. 

Family, Personal

Welcome Camila Esperanza!

Camila Esperanza Alfaro Frazier was born on the Feast of Saint Augustine of Hippo, August 28th, 2020 at 12:39 AM measuring in at 5 lbs and 12.1 oz and 17 ¾ inches long. What I was shirking off as Braxton Hicks contractions kept getting stronger as I drove my mom home from the airport in a torrential rain downpour complete with wind, lightning, and thunder. I reasoned that it was the stress of driving without being able to see in front of me that was causing the contractions, but after getting home, putting my feet up, and drinking water the contractions didn’t let up. Not four hours later, Mila was welcomed into the world at @baby+co in Nashville. This labor and delivery was healing in many ways. Her entrance into this world was the closing of an intense chapter in our little family’s life.

Saint Augustine of Hippo was greatly influenced by Saint Ambrose, whose feast day happens to be MY birthday. It’s also on August 28th that we remembered the 57th anniversary or Martin Luther King, Jr.’s speech, “I Have a Dream.” Oh little Mila, what are you going to teach us? We can’t wait to see what you have in store.

Ichthyosis

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.

Catholic, Mindful Wanderings

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.

Mindful Wanderings

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.

Mindful Wanderings

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. 

Mindful Wanderings

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.