The Spider TIGER Cage

About two months ago, in the midst of quarantine, I reached out to a dear friend, J Scott, that frequently has answers to random questions and is willing to entertain my outlandish musings. I asked if he might know someone that could build Santiago a Universal Exercise Unit (UEU), also known as a spider cage. They are used for kids with various medical challenges, including disorders that result in hypotonia (low muscle tone). Santiago experiences global development delays much like many blind kiddos, but his specific condition compounds those delays due to muscle tone, balance issues, and gait.

Of course, J Scott, in his thick Seymour Texas accent, says, “I gotta guy…Let me do sum checkin’...” You see, J Scott always “has a guy” because he is that kind of guy: friendly and helpful. By the day's end, “his guy” is in place with access to his metal shop, and before I know it J Scott even has someone in Fort Worth willing to powder coat the six-by-six-foot cage. He gets to work and completes the cage in just over a week’s time, which is long before I have the chance to take down my Arteriors chandelier—a sacrifice begrudgingly made in order to fit this monstrosity into our breakfast turned therapy room. (Sigh… what we do for our children!) 

Here is the result: Santiago’s Spider Tiger Cage.

I am so grateful for the various people who are helping get this Tiger on his feet—literally and figuratively. The cage is going to mature Santiago’s balance by activating his vestibular system; it is going to help him enhance proper forms of crawling and walking; and it gives us some extra arms—in the form of bungee cords— with which to work with him. Added bonus: it’s a ton of fun; he loves it! Thank you so much to everyone who made this Spider Tiger Cage happen. Your generosity fills my heart. 

This project also gives me pause to reflect on the past six months, wondering where they went. Quarantining has not brought out my best self. As it turns out, the self-delusion that I can do everything has reached its reckoning. Working plus six teletherapy sessions a week and online learning with Vision Impairment and O&M teachers require exigent effort I sometimes can hardly muster. I mean, do most 17-month-olds understand Zoom and telehealth? It is absurd yet necessary and worth it— most days.

In addition, we had a pretty significant battle with insurance on the very notion of teletherapy—at least it felt significant until I placed it in perspective of the global anti-racist movement. Now, very little feels significant. I am in awe of and grateful for those who have been fighting so long for social justice and working at the forefront of anti-racist endeavors. You must be tired and dismayed, wondering where the hell the rest of us have been for the past few centuries. I don’t have an answer, but I hope it changes. 

I also hope to be in better touch about Santiago’s progression and our process. Some days I can take on the world; other days, getting out of bed just has to be enough. But on all days, Santiago’s happy spirit anchors us. 

Post Script: J Scott has a wonderful company, Metroplex. They replaced my roof a couple of years back after we had some hail damage. He and his crew are amazing! Not only does he have a heart of gold, but he also runs a five-star company. Check them out. You won’t be disappointed. Here is their website and Facebook page.

The Day-to-Day

I have about a dozen different pieces of writing that are just about ready to post, but honestly, we have been too busy with reality—the reality of two working parents, of an exclusively pumping mama, of the emotional roller coaster that comes with the unexpected, and of course, of having an eight-month-old that requires therapeutic interventions daily. With this in mind, I thought I would share some insight into our day-to-day reality. 

When we found out about Santiago’s condition, we took action immediately related to services for him. On the education front, Santiago works with a vision impairment teacher (TVI) and an orientation and mobility instructor (O&M). The former will be responsible for teaching him Braille; the latter tasked with helping him navigate the world and his surroundings with a cane. Ms. Pam and Ms. Tricia are awesome. Given Santiago’s young age, there is overlap with many of the interventions. Consequently, these two women come to the house and do collaborative sessions, which we love. We work on everything, including core strength for pre-crawling, vestibular sense / system development by moving on the peanut ball side-to-side, and tactile exposure by playing with whip cream, other food and even water beads. (You try sticking your hand in a bucket of water beads. It feels weird!) This type of sensory work reduces tactile sensitivity that often blind children experience. He is doing great in this area with the exception of solid food in his mouth. That will be a process (and another blog post).

In addition to VI and O&M, an occupational therapist (OT), physical therapist (PT), and speech therapist (ST) also service our little tiger twice weekly each for a total of six times a week. Now, this sometimes feels like overkill (because it totally is). Our house has a revolving door, and it is difficult to coordinate my work schedule given that I (or Cesar when possible) participate in every session. Part of our job is to learn from the experts and implement what they teach. So, why is so much therapy needed? Well, blind babies usually experience global development delays, specifically related to motor-skills. Sighted kids develop due to implicit learning; they don’t have to work for it. When on their tummy, sighted babies see something beyond their body and reach for it, which triggers them to move limbs, and ultimately crawl, stand, and walk. What is the motivation for Santiago?

This is a sampling of Santi's "work-out" activities. Song Source: “Eye of the Tiger” by Survivor (Lyricist: Survivor; Composers: Jim Peterik and Frankie Sullivan).

Nearly everyone thinks (and frequently suggests) why don’t just put a toy that makes noise across the room and he will want to go to that. It is not that simple. First and foremost, he gets the benefit of that toy sitting right where he is because guess what? He can still hear the toy without moving! This also applies when we try to use noises or noise-making toys to get him to “look up.” He can still hear the toy, the voice, the kissy sound, the clapping, or the singing with his head down and certainly without attempting to crawl. Sound localization takes time for sighted and blind alike. For Santiago, we have to connect that the noise is linked to something that he might want, which is a process. He is learning this concept on inanimate objects that are important to him (pacifier) and people that are close to him (Dad and Mom). I hear Mama’s voice. Therefore, Mama is here. And now, I smile because Mama is here and will likely pick me up. Wahoo! I am super excited that Mama is here so I reach up or “look” up and giggle uncontrollably.

Right now, we are encouraging him to explore outside his space, and he is learning! It is so cool to watch your child learn, especially when you don’t even know it is happening. He finds the pacifier in his crib—his favorite toy and prized possession—and puts it back in his mouth. He reaches for milk and the spoon when in the high chair. He looks for Dad and Mom. He anticipates movement and action based on words, which has been a recent development and pretty awesome to watch because it doesn’t happen with sighted babies this young. He is taking in the world around him—methodically and relatively patiently. 

All in all, we celebrate the small victories, pray about the unknown, and remain grateful that we, as zebras, get to parent this tiger.

"I’M SORRY..."

In the past couple of weeks, we have been placed in situations where we have had to explain Santiago’s condition to individuals who don’t know he is blind, strangers mostly. Some of these interactions and even some responses from people who know he is blind force me to ask the following: Why are we, as a collective society, so scared of blindness?

When the American Foundation for the Blind conducted a survey over a decade ago, the majority of respondents indicated that they believe strongly that losing one’s sight would have the most negative impact on their quality of life. In essence, being blind is more negative than HIV/AIDS, cancer, stroke, and heart disease. Blindness is the only one of these five conditions that is not life-threatening, yet, research reveals that we would rather grapple with something that could kill us than lose our sight. We are that visually driven. We are also seldom exposed to blindness given its rarity; therefore, we might have incorrect assumptions about it. I certainly did.

In this context, I now am little more gracious with myself and others. Out of fear, uncertainty, and self-doubt, we often don’t know what to say when something is unexpected or “different.” Comments have ranged from “I’m so sorry” to “I am heartbroken” to “I’m sorry I asked” to “Y’all better stay healthy and live a long time,” indicating that he will not be able to make it on his own. It is important to recognize that the majority of people have responded positively—sometimes even with humor. Humor is not only okay but helpful. Humor can, although not always, normalize the exchange. Nonetheless, for those who feel sorry that he was born without eyes, I think it is worthwhile to explore why “I’m sorry”—or some iteration thereof— is an understandable but still unnecessary response.

I think the “I’m sorry” stems out of the fear that blind people don’t have freedom; they lack independence; they can’t see the natural beauty of the world; they don’t hold traditional jobs; they don’t…; they can’t…; they must not…. There are myriad assumptions about what blind children and adults might not be able to do or see. I made them myself. Rarely do we ask the question what can they do and even see? In the short ten weeks since we had Santiago, we now know that blind people do just about everything their sighted counterparts do. They run marathons with guide dogs; they are computer programmers, top graduates of Harvard law school, doctors, teachers, engineers, YouTubers. You name it, they do it. But, we sometimes assume they can’t, triggering a response of condolence. It is a natural reaction to the uncertain; however, without even knowing it and even thinking we are being supportive, we have made a blind individual somehow less capable with a simple, “I’m sorry.”

When people say “I’m sorry” after you have a baby, it feels really strange. “I’m sorry” or something like it are usually reserved responses for those who have just lost someone, or something terrible has happened, or they are going to miss out on something. When someone’s parent dies: “I’m so sorry for your loss.” When someone is going through a hard divorce: “I’m so sorry you are in the thick of something difficult.” When we won’t be able to attend an event: “I’m sorry I can’t be there.” But a new baby? How odd, right? I slightly understood the sentiment when Santiago was born. I too was in shock and felt sad for myself and him on more than one occasion. The news meant that what we envisioned (pun intended) for our family was now different. Having a blind child is not what we expected, and in this sense, “I’m sorry” made sense—almost. But these responses, including my own, didn’t bother me any less. In fact, they make me incredibly uncomfortable because “I’m sorry” infers there is something about which to be sorry. Using this logic, the question remains: Do we need to be sorry he is blind?

Absolutely not. We want to send to him messages of encouragement, frequently communicating “go make your life happen” and “with God’s help, you can be and do anything you want regardless of your disability.” Okay, he probably won’t an Uber driver or a pilot, but you get the drift. These messages are hard to convey under the cloud of “I’m sorry.”

I don’t mean to come across as defensive. I acknowledge when people say “I am sorry” they are saying it to us and for us as parents of a blind child, dealing with the unexpected. Perhaps they mean, “I am sorry … that this is not what you ‘planned.’” Or, “I’m sorry… if this is going to be ‘hard.’” It is an expression to fill space—when we don’t know what else to say or do. It is an expression that communicates just how little we as a society know about blindness and disabilities in general and how very uncomfortable we are with both. We want to believe we are open-minded, accepting of all that is “different.” But, “different” evokes a response that is too often not one of inclusion. Different subversively communicates that something is not right with the natural order, that something should be changed.

Rather than expressions that imply we should want to change something about our son, we hope people ask questions—a lot of questions. How are y’all feeling? What are the next steps? What have you learned so far? What are areas you and he will need the most support? Even, what are those things in his eyes? (They are conformers by the way.) Questions allow for learning. Questions suggest a desire to understand, to relate, to include. Santiago doesn’t need our apologies, our condolences, our broken hearts. He needs our rallying cries of support, love, and encouragement. After all, don’t we all?

SANTIAGO'S ANOPHTHALMIA: HOW WAS IT DISCOVERED?

How did we learn about Santiago’s anophthalmia?

Hi everyone! Some are curious about how we found out about Santiago’s anophthalmia. It is a wild story, at least from our perspective. In fact, many are surprised to learn that we didn’t know prior to his birth. As some know, it has been a long road for us to grow our family. Over the last three years, we have undergone significant testing, including thorough genetic assessments. We have quite literally done everything scientifically available to figure out if genetics had anything to do with our fertility struggles. Everything presented as “normal.” At twelve weeks, we also did non-invasive prenatal testing (NPT). Given my age and other high-risk factors, we had multiple sonograms, including standard anatomy scans where they measure brain, head, look for abnormalities in bone structures, and so on. I actually had two of these scans: one at 20 weeks and another at 28 weeks. As it turns out, the actual eyeballs don’t show up on standard sonograms. Sometimes, you can get a glimpse of a cataract, but it is rare. Cesar and I contemplated going in for a 4-D scan, but I opted not to. It is possible that his eye condition would have been identified with a 4-D sono. Again, we had numerous ultrasounds, including some as early as seven weeks, and I thought it was overkill to do another just to get a cute picture of our little man. So, we didn’t.

After I gave birth to Santi, we had an opportunity to do skin-to-skin. His eyes were closed during this time, and I thought nothing of it. As the doctors worked on me post-delivery, I ran into some complications as explained in other posts. Therefore, Santiago was passed to Cesar for additional skin-to-skin time as I went into what I thought was going to be a short standard surgery. It wasn’t. I lost a significant amount of blood, was intubated, and landed in the ICU. But, I made it.

Cesar’s Discovery of Santiago’s Anophthalmia

Shortly after Santi was born, Cesar—when doing skin-to-skin—noticed that Santiago had not opened his eyes. He started to wonder, internally analyzing what could possibly be wrong. But, he was also distracted. I was in surgery; he hadn’t received report from the doctor, and he knew my situation was very serious. However, when the nurses came to do a quick evaluation on our little dude, Cesar half-jokingly said, “So, he hasn’t opened his eyes. Does he even have eyes?” This clearly flustered the nurse and subconsciously confirmed Cesar’s worries. She nervously responded, “The, uhhh, pediatrician, uhhhh, will evaluate uhhh, him...uhhh….” Hours later Dr. Hart, Santi’s original pediatrician, came to talk to Cesar. First and foremost, she verified that I had made it through surgery and was stable in the ICU. She utilized the sandwich method: bookended “bad news” with “good news.”  After confirming my status, she said, “I know you are worried about Santiago’s eyes. So am I…” Dr. Hart, unable to hold back tears, explained what she thought we were dealing with—some form of anophthalmia. She was quite surprised that Cesar was “so stoic” upon receiving the news. I don’t know what it is like to be a doctor in the position of breaking difficult news to parents. But, I also don’t know if most doctors know what it is like to be a parent receiving such news. (I’ll get back to this later in the post…). Cesar had been so worried that he would be faced with the worst-case scenario: Child is blind with other significant health issues involving primary organs (brain, heart, lungs, kidneys, etc.) and wife doesn’t live through childbirth. He spent the entire night, praying for what he thought was the best-case scenario: Child is blind, but okay in every other way and wife will be awake to share the news shortly. We received the best-case scenario.

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Breaking the News to Leslie

After I wake up in the ICU, my husband and sister sit at the foot of my bed, delivering some of the most shocking news I think I will ever hear in my life. It is a simple statement.

“Santiago is fine, but his eyes did not develop.”

Wait what? What? Wait. No, no, no... What?

“We don’t have a lot of information now, but they appear to be fused shut…”

“Is he blind?”

“He looks healthy otherwise. But, yes, Santiago is blind.”

I can’t help myself. I sob, audibly trying to catch my breath—a response I have spent countless hours scrutinizing. I have always wanted to be the parent of unconditional acceptance. God and genetics gave us this precious boy who happens to be sightless, and my first response is low-grade devastation coupled with ample self-pity. He can and will still have a very full life. Cesar could have just as easily announced that our child has blond hair, another unlikely possibility. Now, a little more removed from the immediate shock of the “oh, by the way, our kid has no eyes” news, it is hard to imagine Santiago any other way. He is exactly who he is supposed to be. Don’t get me wrong. I don’t think my response was unreasonable or abnormal. Nearly every person we have told has had the same reaction. But, this response—shrouded with feelings of sadness and fear coupled with a dash of anger—is one from the limited perspective of a sighted person. I will never be able to grasp what it is like to be a four-sense creature. I am mostly a one-sense being with four other highly-degraded senses. Hang with me. Sighted people take in the majority of their information visually, and consequently, we are not required to leverage our other senses for the most part. Santiago will truly be a four-sense being. He doesn’t have another choice. He will experience this world via touch, sound, taste and smell. He will dream in these senses, think in these senses, live in these senses.

But, my response of disappointment, from what I am told, does not last long. I quickly shift into a deposition mode. “But he seems to be fine otherwise? How do we know? What exactly did they say? When are the next tests? Wait… he is in the NICU? Why? What is wrong? When do I get to see him?” I don’t wait for an answer before I ask the next question. Jill and Cesar provide feedback to my questions as best as they can with the limited information they have. The surgery, waking up, the news, feels like a blackout—an out of body experience where bits and pieces are still coming together. Cesar holds it together; Jill cries with me.

Now that we know...

Ultimately, Jill leaves Cesar and me to process together. We cry. We laugh. We cry. I am utterly amazed at Cesar’s strength, and I know I need to show him the same. All I want to do is see my little man, but he is not allowed on the ICU floor. Eventually I am moved to post-partum recovery and make my first visit the NICU. The tears come and go, and we begin to put one foot in front of the other to gather the information we need, ruling out possible complications after more possible complications. MRIs are scheduled; scopes and scans are conducted. As we continue to receive “good news” in the days that follow his birth, my shoulders feel lighter with each report. When a neonatologist delivers his MRI results on his brain, I sob out of utter joy. The doctor is confused by my response because he has just confirmed that our child is indeed blind and has no optic nerves. At this point, I don’t care about his silly eyes that he just decided not to bother creating. I care about his brain.

Next, I start to obsess about his hearing. Is that okay? When will we know? I ask every doctor that makes rounds about it, and they assure me that there is not cause for concern. Finally, I can’t take it. I beg them to do the newborn hearing screen, which they normally do just before discharge. But, God only knows when we will actually get out of here. I can’t wait a month before they check his ears. More weight is lifted when they tell me Santiago’s hearing is fine. Now I need something new to obsess about. How will I know if he can taste? I think I am preoccupied with his other senses because I know just how important they are. But, it also registers that everything about his physical and cognitive development feels overly important, and I need to step back and just let him be a baby. My proclivity to live in the tomorrow is astounding. We are not learning to read braille tomorrow. We are not crawling today. We need to chill the hell out. I need to just be in today, feeding and changing him PRN.

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Some have asked if we wish we could have known about Santiago’s anophthalmia ahead of time. While finding out about his condition when he was in utero would have given us time to process the news, I think it would have caused me to unnecessarily worry for months. Finding out that he is blind after his birth forced us to surrender and accept his condition quickly and without choice. It happened just as it needed to, including the physical trauma I experienced after delivering him. Near death experiences do this: they put life in perspective. Today, we are just happy to be home, figuring it out like every new parent has to do.

TWO WEEKS IN. Or has it been two years?

Has it really been two weeks since we made it home? Here is what I have learned: Newborns want to eat. They also like to sleep, pee, and poop. Those three actions do not change when your child is sightless. Given this information, that is what we have been doing: eating, sleeping, and changing diapers with the occasional tactile playing in between. I am happy to report that physically, I am doing much better. It is hard to believe just how resilient our bodies are. I am almost back to normal; although, nothing feels “normal” anymore. I cannot believe that it has almost been a month since Santiago’s birth. It feels like he arrived last weekend and also feels as though five years have passed.

Santiago’s Overall Health, Post-NICU: We have had two pediatric follow-up appointments with Santiago’s neonatologist, and Santi is doing great. He has surpassed his birth weight, and Dr. Suterwala gave me permission to let him struggle through breastfeeding so I can get away from the vicious cycle of pump, feed, pump, feed with little time for anything else in between. Nonetheless, he still needs a nudge with feeding to continue to gain weight so pumping and bottle-feeding will continue, but hopefully not nearly as much. Thankfully, women are finally speaking up about how difficult it can be to nurse a child. For me, it has not been some glamorous, bonding experience. There has been thrashing at my breasts; there have been private lactation consultants and night nurses; there have been numerous opinions and perspectives offered by friends and family—many helpful, others judgmental. We have tried tube feeding with supplemental nutrition systems, nipple shields of different sizes and shapes, and various other interventions. Ultimately, everyone has to decide what works for their family and their child—an important parenting lesson.

Santiago is finally “off” the oxygen! YES! We continue to do spot checks throughout the day so he is not “wire free,” but it is nice to have a child who finally decided to breathe on his own. It is, after all, a requirement for living.

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EYES: We had our first few appointments regarding Santiago’s eyes—or lack thereof. I expected to cry through the appointments, but that shockingly didn’t happen. I didn’t cry at all. Perhaps I am worried that once I start I won’t stop, and quite frankly, I don’t have time for that. Perhaps it is because I feel guilty for crying. This is who he is. This is how he developed. One day, when he asks me if I wanted him to be something else, I will have to answer that question. It isn’t that I haven’t cried. Sometimes, out of the blue it hits me, and I burst into tears. Other times, I can do nothing but laugh. Seriously, God. Are you kidding? If I am honest, the tears most often are linked to self-pity and frequently come when I am overwhelmed by how much work he is going to be for us. Then again, what kid isn't? Over the last four-and-a-half years, I have learned that the best gifts require hard work. And, I have never been one to shy away from that which requires hard work. Some of my sadness stems from the need to grieve the loss of our Plan A. Santiago mandates that I get on board with God’s Plan Z. Seriously, God. Are you kidding?

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A good friend asked me last night if I am or was mad at God. It’s a perplexing question. Sure, I have been mad at God, and probably will be again regarding Santiago’s lack of vision. (Again, it’s more work for us.) But like sadness, I don’t have time to dwell in anger. It doesn’t change anything. And, more than being angry, I am bewildered. Given what it has taken for us to grow our family, I am utterly dumbfounded that we landed here. Again, the anger and bewilderment leave me feeling guilty and somewhat ashamed. Am I angry at God (and science for that matter) for giving me one cool kid? Am I angry at God for allowing me to carry this kid without incident and without the worry had I known he was blind? All of these emotions are coupled with extreme gratitude for my son, and consequently, all that is left for me to do is stand in awe before God.

Back to Santiago’s eyes…We met with a leading Ocularist, Randy Trawnik, and he gives me hope. He has worked with hundreds of babies and kids just like Santiago from all over the world, and he is 15 minutes from our house. Thank you, God. He will be responsible for continuously expanding Santiago’s eyelids / orbital areas using custom conformers as Santi’s tiny little face grows. Eventually, he will create Santiago’s prosthetic eyes. His work is amazing. In the beginning, Santiago will have new conformers that double in size weekly. He had his first set put in on Monday at just three weeks old. His body will decide how often and what size it needs. It is terrible to watch anyone poke and prod on your child so this piece of the puzzle is very difficult for me. Fortunately in our marriage, we divide and conquer. Cesar handles odd instruments going into our child’s eye sockets; I kill the roaches and stink bugs at home. #Fairtrade.

We also have met with an oculoplastics specialist that works with many infants and works closely with Trawnik. He will help shape eyelids, oversee the medical care, and plan for future interventions. Fortunately, it doesn’t look like Santiago will need surgery right away. We want to avoid unnecessary surgeries when he is so young because it just means scar tissue build-up and potential problems later. Some doctors will try to operate multiple times as the child grows because it gives relatively immediate aesthetic results, but we don’t think this is the best course for our little guy.

So that is it for now. I attached some photos for those interested. You might see that Santi has little pegs coming from his eyes. This gives the doctors easy access to change the conformers as needed.

We are so appreciative of the love and support we have received. People have brought countless meals, come over the walk the dogs and change the sheets. I have managed to get a few showers in because we have had help. Thank you. I would be a mess without this help.

THE TIGER

This is a letter we sent out shortly after Santiago was born. It provides a little context about his birth, his stay in the NICU, and what we knew then about his long-term status right after he was born. For now, the CaringBridge site is still active while we figure out what kind of support will be helpful as we work on his medical care.

Hi everyone,

We have wanted to give a thorough update to family and friends but haven’t had a chance. As some know from texts and social media, Cesar and I had our little boy, Santiago David Lugo, on Saturday, January 12th at 9:53 p.m. I can’t believe he is already a week old. He looks just like Cesar did as a baby—incredibly adorable. We are over the moon happy he is here and have so much gratitude given all we have been through this last week. Life certainly changed in an instant in more ways than one when he entered this world.

Mom’s Status: We are not really sure how or why, but after I delivered Santiago, I had some serious complications. I ended up with a uterine inversion that they were not able to fix in the delivery room. Therefore, about an hour after Santiago was born, they took me in for emergency surgery. This process resulted in significant blood loss in the operating room. Thanks to modern medicine, the doctors were able to stabilize me, but it was touch and go for a few hours. I was moved to the ICU after surgery and monitored closely until they felt comfortable enough to transfer me back to L&D recovery so I could be with our babe. They kept me in the hospital the week, and I was officially discharged yesterday. However, I am “rooming in” at Baylor Hospital so that I can be close to Santi as doctors continue to evaluate him this week. With this information, we will make decisions about next steps and how long I will “stay” in the hospital.

Santiago’s Short-Term Status: While I was in surgery, Cesar was able to spend quality time bonding with our little dude. Again, we are not really sure why, but when they took him to be evaluated as standard protocol, his temperature ran a little cold, and he also had minor fluctuations in his oxygen saturation. The pediatrician made the call to transfer him to the NICU early Sunday morning as a precaution. Since being there, his temperature has been fine, but his food uptake has been a little slow and oxygen has been fickle. However, he has progressed significantly, and we are hopeful they are going to be able to release him sometime this week.

While we are appreciative for the amazing care, the NICU sometimes feels like a merry-go-round that keeps on spinning, making it impossible to get off. Nonetheless, we are trusting the doctors and remembering to be grateful that we have around the clock care for our guy, giving us small windows to rest and recuperate.

Santiago’s Long-Term Status: Completely unrelated to the reasons Santiago is in the NICU, we also want to share other news regarding his long-term condition. We have been waiting on test results to fill people in because there were and are still a lot of questions, and we wanted more information from the medical community before sharing anything.

Santiago was born with bilateral anophthalmia, which means he is completely sightless without any form of eyes or optical nerves in both eyes. His lids are fused shut for now, but that will change as he receives prostheses. The numerous, numerous test results (MRIs, scopes, x-rays, sonograms, etc.) thus far reveal that this is an isolated genetic anomaly. We are still digesting the news and remain thankful that tests thus far are presenting the best-case scenario out of all the possibilities. Brain is fine. Hearing is fine. Heart, kidneys and lungs: all okay. Every step we feel relieved that his health, outside the context of his eyes, appears to check out. We will be meeting with geneticists and ocular specialists over the next few weeks and will keep people posted as we continue to collect answers.

We are terrified and excited with many other feelings that all the words in any dictionary of any language can’t touch. No. Words. Because there are no words, it is all very jumbled in our heads. The terror comes from the obvious: the unknown. How does one raise a blind child? What will his obstacles be? How can he overcome them and how do we help? … And so on. The excitement comes from those same factors. We will get to learn and grow with this little dude, letting him show us what is possible in this world. He is not going to know any differently, and our job now is to parent him the best we can and love him unconditionally.

God is good. We love Santiago so much we can’t even stand it, and Cesar and I can do hard things when we do them together. This kid is special; it’s hard to describe. Cesar says it best: “When I am around him, I get the feeling that Santiago is thinking, ‘Dad, you are just a zebra, but I am a tiger.’”

So, Cesar calls him Tiger, and I call him Twenty-Five. The latter moniker comes from the statistical odds of me going through what I did delivering him, living through it, and Santiago’s anophthalmia: one in 25 million. These odds don’t even account for having bilateral anophthalmia (both eyes). Santiago is obviously supposed to be here.

Needs and Support: We have a CaringBridge site that will contain more information over the next couple of days along with how people can help as we transition home. The site is https://www.caringbridge.org/visit/santiagodavidlugo. With time, we will create a website or blog where people can go to find out more about Santi’s latest medical updates, his progress, and our overall process. I hope that it will be a place for us and others to post resources and information as well. Right now, we are just getting through Week One and trying to make it home from the hospital.

We have already received so much love, support and encouragement from our family that it is overwhelming. The saying “It takes a village” is no longer a trite expression for us. Thank you so much for all the continued support and prayers. If we don’t respond, we are probably changing a diaper or panicking. We’ll get there!

There are more details to share—many, many “God winks.” As I continue to write, I will continue to share.

Love to all,

Leslie, Cesar, and Santiago

Post-Script: It was recently pointed out to me that if you look carefully, Santi’s full name has GOD in it (SantiaGODavid). No, that wasn’t planned, but we believe that God is quite literally in the middle of this boy’s life and has great things in store for him—as He does for us all if we just get out of the way.

“Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.”—James 1:12 (Santiago: Spanish for James)

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