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Today’s Mindful Wanderings: Hallowtide + Momento mori

Halloween is the beginning of Hallowtide in the Catholic Church – the first of three days where the Church remembers those that have come before us: Halloween (All Hallows Eve), All Saints Day (All Hallows Day), and All Souls Day. Halloween, for us, is actually supposed to be a day of fasting followed by All Hallows Day, which is a feast of celebration and remembrance of the saints that came before us. All Souls Day is a feast and celebration of remembrance of all of the departed, especially those close to us. Many are aware of Dia de los muertos in many Latin American countries, especially since Disney’s movie Coco came out last year. And the movie wasn’t that far off in some regards – we set up pictures and candles and we remember our lost loved ones, often eating and drinking the things that they also loved.

If you hang around Catholic circles enough you will end up coming across the Latin phrase “Memento mori” which means remember that you will die. It may seem morbid, but really it’s a call to recenter priorities and refocus on God, as our ultimate goal is to be a saint, to enter Heaven. Hallowtide reminds us of this, too. Hallowtide reminds us that, as Sr. Theresa Aletheia Noble points out in her article about “Memento Mori,” “…Jesus has changed the nature of death for those who believe. Before becoming pope, then-Cardinal Joseph Ratzinger once wrote: ‘The sting of death is extinguished in Christ.’”

Some believe that the veil between the departed and the living is thinned during this time of year, but the Catholic doctrine regarding saints has helped me understand that our friends in Heaven are always near with an open heart and a listening ear asking, “how can I pray for you today, my friend?”

And the past 18 months has also shown me how thin that veil between life and death really is. The first week in July of 2017 I found out I was pregnant with Olivia and my sister was diagnosed with breast cancer at the age of 34. The anticipation of life and the reality that we will all die someday sitting together in one room. We find so much hope and strength in anticipation for babies to enter this world, don’t we? But babies also remind us of the fragility of life. Olivia came 8 weeks early and with a congenital skin condition that had potentially bleak outcomes. When Olivia was born that veil between life and death seemed not like a veil, but a gaping doorway that she could slip in and out of at any moment.

A year after my pregnancy news and year after my sister’s diagnosis – only about three months since Olivia had been discharged from the hospital – our 18 year old cousin fell into a coma. And all of the sudden I was reminded of that thin veil between life and death once again. Again, face to face with how quickly and unexpectedly our life can be taken away. Our familial resiliency convened once again and we came around to support one another again. Although weary from our own sufferings and questioning how much more we will be asked to endure, we found each other. And I’m reminded that we have ancestors that came before us that endured their own hardships and they are still there beside us, convening with us asking, “Mi amor, how can I pray for you?”

As my sister’s tests came back clear, and Olivia continued to be her happy and content self, and my cousin made progress recovering from a brain injury, I found out the one of the youth that I worked closely with during my time working in restorative justice was shot and killed by other young people in his apartment complex. My heart broke as I wondered how much more emotional energy I had stored up to process this all. And I found comfort and hope in “momento mori” because our life on earth doesn’t have to be the end. We learn. We grow in relationship with others. We find and rediscover our identity and who God has called us to be with the hope that we leave a legacy of love and goodness for those that will come after us. We endure for the good of the future.

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A Note from Natalie: We’re All Doing Alright

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I can hardly believe that it has been three months since I last wrote an update. As most of you know, in August our little family of four (and our dog, Oso) said, “see ya soon” to California and made our way to Tennessee. There are several things that prompted the move, and although it was certainly the right decision for our family, it has not been easy. The move itself was relatively painless thanks to Casey, his little brother, and his dad. My dear friend Melissa was sweet enough to drive from Long Beach to Carmel Valley to San Francisco, to hop on a plane just to be an extra set of hands for the flight. She is simply the best.

We are living and helping out on a beautiful farm in a small town east of Nashville. Casey gets up most mornings to help with the morning chores and helps throughout the day with anything from cleaning eggs to moving cattle fencing. I have learned how to eviscerate chickens and ducks. With this setup Casey is able to spend time working on his music and we can spend more time together as a family. This transition has forced me to rethink my ideas around productivity. I have worked outside of the house pulling in predictable and scheduled paychecks that I’m trying to figure out what is realistic to expect of myself right now.

Between the farm work, establishing medical care for Olivia, and settling into life as a family of four, the last few months have just blown by. We deeply miss “our people” back in California that did so much to wrap us in their arms and take care of us in immeasurable ways. We were so lucky to have people around us that knew how to deeply care for us. We have been welcomed to Tennessee by some wonderful people, including the Simpsons who have been gracious enough to let us “help” on the farm. We are continuously humbled by the generosity and love that was and continues to be extended to us.

Life seems to be slowing as the weather gets cooler and Casey and I are finding that there are a lot of things that we are just now processing about the last 10 months. It often feels like the world was going by us a hundred miles an hour and it has taken awhile for us to catch up. And as Olivia’s first birthday draws near, I find myself wondering how it’s all going to feel when the day after Christmas arrives. Of course, we find ourselves in awe of her on a daily basis. In awe that she is here with us giving up belly laughs for Oscar and mimicking sounds. We are in awe that she has such a laidback temperament after the trauma that she has experienced in her short 10 months. We often say that when you look at her, you just know that her soul knows something more than any words can express. She’s already lived a remarkable life. And we know that there is just more of the sweetness to come, and for that we are incredibly lucky. But do not be fooled, the girl has an ornery streak.

Establishing medical care for a baby with a rare condition in a new state is a fulltime job  – let me tell you. I’m still trying to learn the ins and outs of the system in Tennessee. We are fortunate enough to be tapped into Vanderbilt, which has a children’s hospital that is on par with USCF. The care Olivia has received has been wonderful. What is difficult is educating and re-educating about Harlequin ichthysosis, and having to answer the same questions and review the same information over and over again. As any parent of a child with medical needs will tell you, it’s draining and exhausting to go through these appointments. At UCSF all the specialists saw Olivia while she was still in the NICU so they were learning with me. Here, they walk into the room like a deer caught in headlights. What has helped me be a little less annoyed is that Vanderbilt is a teaching hospital, as was UCSF, which means that just by Olivia going to her routine appointments future medical professionals are learning about a rare condition. If that means that another set of parents down the road doesn’t have to be told outdated information and can be given some peace of mind, than I can curb my frustration that her chart is STILL not up to date after months of appointments.

Olivia has been able to maintain some weight gain without her feeding tube, but that conversation is still my least favorite and the most frequent. We go to physical therapy and occupational therapy on a weekly basis and we average three appointments a week in Nashville (about a 40 minute drive). Cognitively Olivia is typical and hitting her marks.  Although, we know she has minor hearing loss in one ear, she is cooing and mimicking sounds. She still loves to hear Casey play guitar just like when she was in the hospital. She and Oscar find so much joy in “playing” together, which is usually Oscar whipping around the room and Olivia smiling and laughing along. Olivia sits up on her own and has been doing so for a little over a month.  Much of her physical development is delayed though – she doesn’t roll over well, or frequently, and she is just now starting to put weight on her feet and legs. We know to be patient because she will catch up. She will be getting another ear cleaning and hearing test in the next few weeks to determine her hearing in her left ear. She may need surgery on her left hand and left foot – we have an appointment next week about that. I’m hoping none of this means any more hospital stays, but that’s always a possibility. It seems as though hair is growing in well, but her scalp is definitely one of her most dry areas so damaged hair follicles are always a concern. Overall, Olivia is doing well. She is happy and curious and sociable. We are so lucky to have her in our family.

Life is starting to find its rhythm again. Please continue to pray for us: that we are able to figure out stable income, Olivia’s continued health as flu season started early this year, and for wisdom and protection for upcoming procedures.  And, as always, keep all the families with children in the hospital in your prayers. Lastly, please keep my cousin Tito in your prayers. He is recovering from being in a coma. I started a GoFundMe for my aunt where you can learn more about his progress: https://www.gofundme.com/TitoAlfaro.

In infinite gratitude,

Natalie

+JMJ+

 

 

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Home: Saying Goodbye (for now)

The great irony of my life is that when I proclaim something, I often end up eating my words. I had finally settled into being home and I was in the process of coming to terms with what life might look like for me in the near future taking on some small side paying jobs, starting Oscar in a preschool, and mapping out some goals with Casey for his music. I was trying to establish a routine and a schedule for us. I was finding my identity again and that was largely reflected back to me through this place that I feel in my bones: home. My last blog post was all about the healing power of this place for me and how intimately we know one another.

But, as life goes, God took me for a 180 that I could never have guessed. Again, I was reminded that “surrender” is the word of 2018. On our way to drop off an application for an apartment in Monterey, a series of events occurred that drastically changed our route. The short of it is that we will be moving to the Nashville area in August to work on a farm and dig deep into that music world. A world that we’ve carefully skirted around for years, but Casey is ready to go at it again. As much as we both wanted to fight it, we just had to say yes. It was all divinely falling into place.

We partly had to say yes out of desperation, too. The Monterey Peninsula is just too expensive. It breaks my heart to see my fellow Californians being pushed out of their hometowns because the cost of living is unattainable for most of us. We’ve all heard it over and over: my generation was told to go to college and promised you’d get a good job and you’d be better off than your parents. We all know where the rest of this goes.

I have a complicated relationship with Nashville, which made for a tearful and reluctant muttering of yes. Little did I know Casey was praying that I would have an open mind and heart about the whole thing. See, I have said countless times that we would never move back there. I would never move back there. I couldn’t help but be baffled at God’s timing of this all. After the last year that we have had now is the time that I have to surrender again? But, I couldn’t deny this tugging feeling that home was telling me to move on. And as I rolled my eyes and agreed to the move, it finally made sense why I had to say “yes” all those other times. For anyone that knows us, a move to Nashville has been discussed and reworked a dozen times. In the end, it was never right. Each time I agreed to this move before and it didn’t happen, it was like God was softening me so that this time, in His time, I was ready to do it. He knew that I wouldn’t have agreed so easily if this was the first time because this move is and will continue to be complicated with a 2.5 year old and a 6 month old with a rare skin condition and a lot of medical needs.

An adventure awaits us that we are being called to undertake. I am heartbroken to leave my precious California and to leave my family and friends. We live in literally one of the most beautiful places on earth. I can barely think of the Pacific Ocean without feeling a lump well in my throat. This place and this community has been so good to us for so long.

As you can imagine, moving across the country is expensive. Transferring all of Olivia’s medical records and history continues to be a saga of terrible hold music and a glaring verification that bureaucratic systems are made at the hands of flawed humans. But, we will make it work and it will be okay. As my very wise aunt, Gina, told me in a voicemail recently: “…it all works out in the bigger picture. You don’t know what’s in store for you.” So, off we go.

Mindful Wanderings

Home: Settling Back In

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“Monterey” by Unknown Artist

During our last trip for appointments, as Casey and I drove past the hospital to Family House, we bantered about missing our life during Olivia’s hospital stay. It’s weird to miss a place that we were itching to leave. We desperately wanted our space back. I wanted my family to all be in one room together. I wanted control over our daily schedule. I previously wrote about the beautiful gift that is community at Family House. Since leaving we have been welcomed back with warmth — thanks to Family House we always have a free place to stay when we have appointments. The last two visits have helped me realize how much part of me misses that routine we had created. When we exit the 280 there is a sense of arriving at a familiar home. It’s a mixed bag of feelings — especially for Casey who hates city-living and usually can’t wait to leave after a night or two.

But, the feeling of peace that envelopes my body as we have settled back at home is undeniable. I find myself stunned, still, after being home for two months, at how slow our little village is and how perfect the Spring and Summer lighting is in the early morning in the valley. A rush of nostalgia as the warm light comes through oak trees and wildflowers add a splash of color to the browning California hillsides. A renewed connection to the land as I kick up dirt at Garland Park, my postpartum body struggling to run the trails that I can still navigate with half of my brain while the other half is distracted by fleeting epiphanies. I have found myself in old patterns that have been healing. Patterns that help me remember my core, my self. One afternoon I mindlessly turned down Carpenter and followed the truck route and weaved through Carmel. This particular pattern startled me into the realization of how overwhelmed and sad I was feeling. Both kids asleep in their seats, my soul took me to the beach.

“The cure for anything is salt water: sweat, tears, or the sea.”

– Isak Dinesen

A rush of gratitude overcame me. This place, my home, has offered a refuge for me for most of my life. The deepest part of me is so intertwined with this place that without any conscious thought it takes care of me. I sat at the beach with my windows down listening to waves crash and tourists chatter wondering how many hurts have been healed and how many relationships strengthened and restored by the side of the massive and powerful Pacific. I used to say that going to the beach was the best thing to do when you have a problem because you are forced into humility as you look into the expanse that holds a hidden world. Little did I know what that would mean to me today.

While I was sitting there by the beach I remembered a picture I had taken in San Francisco when Olivia was still admitted. The day I took the picture, I decided to walk through a different, further entrance into the hospital. Along the hall there was an abstract painting hanging on the wall. I am not one to sit and absorb art, but this piece grabbed my attention long enough for me to translate the streaks of colors into hills, land, and water as I walked past. It struck me how much it reminded me of home. I actually took a few steps backwards to give it another look. As I scanned the painting I noticed the white tag with the word “Monterey” written on it. I did a double take, thinking surely my mind had auto-completed, but it hadn’t. There on that little white rectangle hung the name of the artist and title of the piece, “Monterey.” As I walked away I contemplated home. I questioned how I could so easily associate this painting with a place in such a brief encounter. Is it the pure talent of the artist that the essence of a place could so aptly be captured in a painting? Or does my connection to this place make it so that my body intimately recognizes it through the simple suggestions of ratios of land and sea and the balance of colors.

As I got into the elevator and hit “3,” I could feel my home in my bones. I carried that encounter that rainy morning with me throughout our stay in San Francisco. I actually started this blog post while we were still up there and had written, “It is home and will always be home no matter how long I am gone. I realize how lucky I am that I so keenly have a sense of belonging. And lucky me: I feel I belong to a place that has astonishing beauty. I look around at views that could easily be paintings hanging on walls in far away places. And so often I walk past and forget to observe and absorb it.”

Since being home I have made every effort to absorb it all. To memorize the hillsides and the shadows. To remember the nuances of our coastal seasons. To honor the power of place.

+JMJ+

 

Mindful Wanderings

Dear Nurses, Thank You #nationalnursesweek

In honor of today being both Mother’s Day and the final day of National Nurses Week, I have some things on my mind.

First to my mom who is both a nurse and a mother: it’s like today was made for you! Never could any of us have anticipated a year in which both of your daughters would need you as both a nurse and a mother in such an intense way. But you showed up for both of us with a strength that only a mother could muster.

And I have a confession: Until this experience at the hospital, I really didn’t understand the fullness of what my mom did. I knew that she did a bulk of the work that shows like ER and Gray’s Anatomy would leave you to think doctors did. And now I certainly understand why people felt the need to come up to us at the grocery store to tell me how great of a nurse my mom is. I kind of thought people just said that kind of thing to me as a way to be polite. But now I understand the importance of the social-emotional side in addition to the technical side of my mom’s job. And I mostly feel like a jerk for all of the times I gave her a hard time after a long day at work.

And I can’t help but think about the nurses today that acted almost as surrogate mothers to Olivia. They offered care for her when I couldn’t. They taught me how to love and connect with her before I could see her. Before I could touch her. It is because of these nurses that I am even able to be a mother this baby in front of me today at all.

The nurses cared for her gently and passionately, learning her cues and the subtleties of her personality – much like a mother would in the first few months of any baby’s life. Simultaneously they respected and honored my role as Olivia’s mom.

Although we were trapped in the NICU for 102 days, I was hesitant to leave when the time came. Some days I even find myself kind of missing the hospital now. I joked with one of the nurses before discharge that maybe it was a subtle form of Stockholm Syndrome. In reality, I know that the reason for this is because of the support and friendship that was extended from the nursing staff at UCSF to our family. I knew that it was going to be isolating to go home (it kind of is). I also knew that it was going to be exhausting to have to re-explain Olivia’s condition to every new person we meet, professional or not (it definitely is). But, my joke about Stockholm Syndrome came more from the fact that I actually had grown to really care about the nurses. I’m not even mad about how much we failed to cluster appointments because I get excited just thinking about giving Olivia’s nurses a hug.

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Saint Agatha – Patron Saint of Nurses

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I’ve been thinking a lot about what I have learned from this season of life and my biggest piece of advice is to get to know your nurses. The nurse that discharged us was a nurse that I affectionately named “Coach” because every time I was having a hard day or trying to figure out how to convince the team that something wasn’t working, I would just troubleshoot ideas with her. Nurses know the system and can truly be your best ally.

So, hug your mom and hug a nurse because there is a good chance they would appreciate a little love to fill up their tank!

– Natalie

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A Note from Natalie: We’re home!

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On April 7th, the Saturday before Divine Mercy Sunday, Olivia was discharged from the hospital. It all happened so quickly that I was certain something would stop us from leaving. Olivia had a procedure for her ears on that Thursday and recovered well. During rounds the doctors looked at me and asked, “So, do you have any reason to stick around?”

I was dumbstruck.

Of course we wanted to go home, but by responding with, “No, we have no reason to stay” I knew I was also saying, “Yes, we are ready to take this on at home.” And that was the part that felt the most overwhelmingly.

Taking on Olivia’s cares without a full time nurse has been a challenge, but we continue to find a routine that works for our family. A routine that is full of appointments and phone calls and lots and lots of coconut oil, aquaphor, feeding tubes; and a whole lot of trial and error.

After our first few appointments and the first couple weeks home, it was pretty clear that I wasn’t going to be able to go back to work full time. Since leaving the hospital Olivia has unfortunately stopped eating from a bottle, which means that we are relying on a feeding tube to keep her nourished and hydrated and it’s breaking me. She will nurse, but not often because she rarely feels hunger. Her feeding has been the biggest knot so far because there are so many variables – she had thrush, we changed her fortifier and then changed it back, she no longer latches to the bottle that she took before, and the list goes on.

We avoided talking about my job, knowing the inevitable, until Casey and I finally had a “come to Jesus” moment. We knew it was the right decision to make, but it was also scary. My paycheck has always been the constant that we could base our budget around. The line in the Our Father when we simply ask God, “Give us this day our daily bread” comes to mind regularly these days.

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The silver lining in all of this is that it’s giving us the opportunity to really focus in on Casey’s music; and me being home is giving us a lot of time as a family. We know that this is what we’ve wanted for awhile, it just didn’t show up quite the way we expected.

We have been welcomed home in such a sweet way by the familiar and I am so grateful for that. This weekend I went on a run/hike at Garland and found myself huffing up a trail looking at all of the purple around me. Suddenly it hit me that the last time I was on that trail I was only a few weeks out from Olivia’s birth, but I had no idea how soon she would come or how much our world would be turned sideways. This was the very park that I saw those first two coyotes. It was a sense of home when we were in the city not knowing when discharge would come and my mom would say to me, “when you go home we can finally take Olivia to Garland and you can run and I’ll stay back with the kids.” It felt so far off when she said that. But on Saturday I found myself zigzagging on trails that I know like the back of my hand breathing in the smell of dirt and the familiar native plants. Part of me didn’t really feel home until I got sweaty and dusty in this land again. These runs in Garland and along the Pacific are therapeutic for me and I need to remember that because I need a lot of healing and I am working on a lot of forgiveness on events that surrounded Olivia’s hospital birth.

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I try to keep these simple comforts and the joy of my kids at the forefront of mind as each day brings its own set of challenges. Luckily, two year olds give you a lot of laughter and preoccupation from adult worries throughout the day.

Current Prayer Requests: Olivia’s feeding, our family as we settle into our new normal with me at home and one income, and for the families that are still in the NICU.

Warmly,

Natalie

+JMJ+

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Today’s Mindful Wanderings

93 days in the NICU. Nearly 93 mornings that I have walked by this view and thought I should take a picture. The lighting is always just right and the natural earth tones starkly set against the concrete is a visual reminder of the tension between tender new life living in such a sterile and medical environment. These 93 days have brought us from Christmas to Lent and now (im)patiently awaiting Easter.

One of the (many) reasons I love the Catholic Church is the opportunity to engage with the liturgical calendar. Every season is meaningful and throughout the year there are repeated opportunities to practice patience and penance only to be rewarded with feasting and celebration. As humans we seek ways to keep track of time, often for the purpose of remembrance. Liturgical living does this on an even deeper level.

This year I am finding myself especially focused on Holy Week as we conclude Lent and look towards Easter on Sunday. Spy Wednesday (remembering when Judas betrays Jesus and reflecting on the times we have failed and have also betrayed Jesus), Maundy Thursday (when we remember the Last Supper: the institution of the priesthood, the mass, and the Eucharist – the alters are stripped, feet are washed, the Eucharist is removed, and we enter into three very intense holy days called the Paschal Triduum), Good Friday (reflecting on Jesus’ crucifixion and death), which finally brings us to Holy Saturday and the Easter Vigil. The mass starts in the darkness of Lent and by the end we are in the light of Easter. We have welcomed new Catholics through baptism and confirmation, Jesus has given us his body and blood, and Jesus has risen.

Lent is heavy, but there is light at the end of it. The darkness of winter is ushered out by the light of spring. And how much more sweet and warm is that light after enduring the last days of the darkness. I see Easter celebrations starting and I understand the temptation to hurry Lent up to celebrate. But, I pause. We must wait. The parallel of wanting Lent to end already and my impatience for discharge from the NICU is not lost on me. Now that we have a tentative timeline for discharge I just want to hurry up these last days so that day will finally come. But if we are deliberate and prepare for that Easter Feast it will be that much more sweet and deserving, won’t it? As will be the day that I trade urban cactus for the coastal oak trees of home.