Sevi was the product of a healthy pregnancy. In fact, during my pregnancy, my biggest concern was that I would not be able to carry him to term. His older sister had unexpectedly been born 5 weeks early, with no determining cause. Doctors had proposed that I could not carry to term, for whatever reason, so we were ready for anything- at least that is what we thought.
Being healthy myself, and not being over the “magic” age of 35, I had elected not to do any of the tests that are offered to pregnant women to determine a risk for chromosomal differences or other “birth defects.”
We had elected not to do an AFP blood screening, which was the standard offering at the time. I declined the test as I knew many people who had received either false positives or even one of my closest friends whose risk factor came out negative and later delivered her daughter, who has Down syndrome. Another friend had “feared the worst” after her AFP screening came back positive. She later gave birth to a healthy baby girl- with no genetic concerns.
We knew we would not do further testing, even with a positive result and that no answer would change our decision to have this child. We knew there were risks any time a person has a baby, and we figured we would roll the dice.
The only test we did do was the 20- week ultrasound. We told ourselves that we were prepared, that it would not matter- but the most honest truth is that we never really believed that Down syndrome would happen to us.
I thought I had learned the first time around what risks were. I had no idea what that really meant, until I did. I spent my pregnancy blissfully unaware of what was happening with my son. Thinking my only concern was delivering too early, I was thrilled when at 37 weeks (2 weeks longer than I had been able to hold Isa) I went into labor.
Labor with Sevi was fairly easy, I had elected to bring Sevi into the world without any pain medication, as that was how I had done things for Isa. With her there had been no choice, things happened so fast. After two painful contractions I told the nurse that I was going to push and there was a flurry or action as the doctor, who was just about to leave her shift, came running into the room just in time to catch my son who came on the second try.
At least I thought it was a flurry. The reality is that the flurry was still to come.
When Sevi arrived, the doctor allowed my husband to cut the cord. It was very exciting for my husband to let me know that we had a little boy. Right after he was born the nurse put him on my stomach and it became clear that his color was not good. He was still a bit blue and so the nurse calmly told me that she was going to take him and warm him up. I had barely even had a chance to hold Isa before the NICU team descended upon her so I was not really aware that I should be concerned.
Besides, the nurse was so calm. We named him Luis Sebastian. Luis after his father and Sebastian because we both loved the name.
During that time my husband was snapping photos of him, and bringing the camera back for me to see.
** I remember thinking that my husband, who is a photographer by hobby and has taken some of the best photos of our daughter, was having trouble getting a good photo of him and I kept sending him back to get more photos. It was a thought that ran momentarily through my mind, and then it was gone- not to be thought of again, until it was among the things I could not stop thinking about.
Finally, when she gave him back to us his color was much better so I had an opportunity to hold him and at that moment he gave me the sweetest little pouting face. The photo of that we have of that moment remains one of my most precious photos of him (and in that one he looks beautiful). It is one of the few that we have of when we thought that all of our dreams had turned out exactly how we had planned. No other photo from the hospital or the next 4 months has quite that perspective.
Soon after that the nurse took him to examine him for a full exam. When she brought him back to us all cleaned up and ready to go she handed him back to me. When she did he was sticking his tongue out a few times and I thought it was so cute to see that he was doing that. In fact, both my husband and I noticed him doing that at the same moment and we actually giggled over that.
We were so blissfully happy.
Minutes later our nurse told us that she wanted to talk with us about some of the things that she noticed about our baby. In my euphoria I remember thinking that she was going to give us some “New Parent Tips”. I had no idea what was to come.
She sat near our bed and gently told us that it was her professional opinion that he had some of the physical indicators common with Down syndrome. I am not sure what I heard after that, in fact, I was not even certain that I had heard what she had just said. I felt like I was in a vacuum. I heard pieces of things and an echo but I couldn’t quite place sounds and where they were coming from.
When I snapped back into things I was not really sure if what I thought had happened had in fact happened. It amazes me just how quickly it seems as if your life and all that you thought it would be can be completely turned upside down.
As I checked back in I asked her what that meant. She told me that he had a significant depression line between his big toe and the rest of his toes on his feet and that his ears appeared to be small and a bit lower than expected on his head. She cautioned that she was not a doctor but that she did notice these things and that she suggested they have a doctor come and look at him. Then she cited his blue color after birth and told us that he did in fact, have a heart murmur.
Though I wanted to yell at her- to tell her she was wrong- in fact she must be crazy- that things could not possibly be as she was describing them- I could not. She was really wonderful to us and I have to look back and wonder if it was her who got us through. She was factual, but not absolute and that allowed us to hope, to pray, to believe that she might be wrong, even though we should have known that she was not.
As I was in my removed state- that feeling of being in a vacuum or even another life there were a number of thoughts that moved through my head at a faster rate than I had ever experienced before.
Not surprisingly my first thought, as I looked at his beautiful face was what was his future going to be like?
Who will take care of him when I am gone?
I even worried that my husband, with whom I had never discussed disability, might not want this child to be the one who carried his name. Then, though, very quickly the focus shifted to my daughter. I began a deep worry about her, at the same time I assumed an unreasonable guilt for the impact this would have on her life. I remember the words “What did I do to my daughter?” clearly running through my head. It was me who had wanted to have a second child. Of course my husband had agreed but he had wanted them spaced out more than I had encouraged.
After Isa, I had experienced a surgery that I feared would affect my ability to get pregnant. Due to that fear my singular focus became proving to myself that I could have another child- as a big family is what I had always wanted. What had once filled me with so much excitement, in that moment filled me with blame. If I had waited maybe the genes would have been different- maybe Down Syndrome would not happened if they had not come so close.
I wondered if her life would ever be normal because her brother was born with a medical condition and a diagnosis. Thoughts of not only what is going to happen to my son but my daughter flew through my mind at a speed I have never experienced before.
After worrying about Isa, I began to worry about us. What about the plans we had made? Would we ever have that moment when the kids grow up and move out of the house- would Sevi (as he was later nick- named) always need us to care for him- would he experience a time when he could be independent and move to the adult phase of his life.
I worried about travel and if we would be able to go to the places we had planned or would we need to stay home to care for our adult child?
I wondered if this was a sign, or worse, if I would be advised not to have more children. I had already given birth to a child prematurely and now one with a genetic condition. I worried that the chances of having more than one child with Ds would skyrocket.
Then, my thinking shifted and began to wonder if this was really happening. I had a close friend who had a child with Down Syndrome just 5 years earlier and I began to get a bit confused. This could not be my story- this was her story. It was her who had this experience- how could it be real that it was happening to me as well?
Slowly I began to come back into my own space as I heard the nurse explain her concerns more thoroughly and I thought of questions. The questions, though, did not come forth- just more of the fog as we waited for answers.
Sebastian was born at 2:50 in the morning and by 6:00 a.m. the pediatrician came to see him. However, rather than giving us a diagnosis he recommended a blood test to “confirm or deny the suspicions”. He guessed that it would probably take a week for us to get the test results back. I remember thinking why would it take a week- how could they make us wait that long and what should we do in the meantime? What did we tell people, and what were we supposed to believe?
We decided, in that moment, that because we would be waiting for a week, that it would be better not to tell anybody about the possibility of the diagnosis.
We rationalized that we did not want to needlessly upset anyone if we were to find out that they were wrong about Sevi. At that point, of course, we were hopeful that he did not have Ds because in a perfect world he would have been born completely healthy, with no disability or syndrome, or issue with his heart, so we were of course hoping that the blood test would come back negative and would deny the diagnosis.
We made a number of decisions based on a possibility that we now know was not really ever a possibility at all. That moment started the limbo in which we would spend the next six months of our lives.
Hours later it was time for us to leave the birthing room and transition into our recovery space where we would spend the next few days. Before we left our “go to” nurse asked us if she could pray with us. At that point I was so overwhelmed I figured it couldn’t hurt so we agreed.
When I looked back that probably should have been my knowing moment. She asked us if she could pray for us. In my experience praying was done when something bad was happening but through the fog I forgot to reason.
As she prayed the tears began to flow though I could not even pinpoint when they started but I was transitioning from the bed to the required wheelchair I began an inner panic. I suddenly had a moment to stop thinking about my own inner turmoil and began to think of the world outside the hospital room door. I felt as if there was a sign on the door that said, “Caution- tread lightly- this family has just been told their child is disabled.”
My perspective completely shifted and as we moved out of the room and down the hall I felt like everyone was looking at us and waiting and watching to see what we would do and how we were taking the news. Even though I was afraid, and even though I wanted support, in that moment I could not wait to get the hell out of there and take my baby home. That feeling stayed with me until I checked myself and my son out of the hospital the next day.
Once we had moved to our recovery room, life started to seep in through the shadows. Sevi was here- with Down Syndrome or not, and he needed to be cared for. I tried to feed him but he would not latch. I asked for a pump. It had been difficult to feed Isa and not knowing as a first- time Mom I almost cut off my own milk supply until I needed to go through a horrendous process to get it going again. I was not about to do that again with this child.
I asked for a breast pump and got pumping. It was a small way I could control a small part of this situation. I was assured there was no reason he could not breastfeed but he was clearly not taking to the task. He drank some from the bottle but we had been warned that he may be sleepier than most babies due to the nameless heart defect we were still waiting to learn about.
Slowly I began to hold onto things that kept me grounded- the “normal” things I would have done that kept me from focusing on the possibilities of Down Syndrome. We assured ourselves that he was fine- we dissected his facial features and determined from which relative he had gotten each one and we talked away our concerns and desperately tried to push Down syndrome further away from our baby. We decided to relive our sitter for a short break and that in order to do so my husband would go home and get Isa to visit her new brother.
This had been our plan prior to his birth and it was so important for me to see that plan through. It was just one more thing that I could control.
As I waited for my daughter I was kept in a state of anxiety by the constant comings and goings of many people in our room. This is typical with the birth of any child in a hospital- checks for the mother- checks for the baby- but with Sevi came even more visits. The first such visit was to draw the blood that would tell us how life would play out in front of us.
The baggage that I hold from this is that to this day I cannot take him for a blood test. Throughout all of this, Sevi was amazing and I was a wreck.
As soon as I heard my daughter’s sweet voice I felt so torn. She was thrilled with the tea-set he “gave” her and we had about 30 minutes of calm. Of joy. Of peace. Of normal. Years later I realize what a gift that visit was- and how glad I am we insisted as it was the only portion of our time in the hospital since the suspicion was shared, that we felt as we had thought we would.
While I was still synthesizing this information and trying to figure out “what next?” I received a visit from a Geneticist. Now- this is a woman who stayed in our life about two years after Sevi was born. She was always kind, with a gentle voice, and a calm spirit. She is also no- nonsense and practical and I liked her immediately.
During the two years I knew her I had come to respect her as it was increasingly obvious that this is a woman who is very very good at her job. Still, with all of that knowledge and expertise- neither she nor any one other professional ever once asked where my husband was or if I wanted them to come back when he was there.
When I saw her I noticed she had a book in her hand. She talked to me, and looked at Sevi, talking throughout the visit and checking my little one over as she did and then she handed me the book she had brought. It was a book on parenting a child with Down syndrome. I remember asking her why she was giving me this book already- informing her that he had his blood draw and that we were expecting the results in a week.
She looked at Sevi again and then looked at me kindly and told me that I was welcome to wait for the blood test results but that she had been doing this a long time and that she was 98% certain that based on her observations, Sevi did in fact have Down syndrome.
All of the sudden I was flooded with that image of my little boy and his little pouty face and the image of him sticking out his tongue at us and immediately and without warning the image that I had in my head- that had been so endearing to me just a few hours before was no longer something to smile at but something that I worried would set him apart from others.
I look back on that moment and I feel like I should have hated her. She was the person that took away my version of “what should be” and told me that it never would be as I imagined. She was the one who made me change my favorite image of my son into something to fear. She was the one that told me what would, for that moment, change what I thought about the trajectory of my son’s life.
She told me when I was alone and then left me there to grieve. Worse than that, she left me alone to have to be the one to tell my husband, as if I had any idea how to do that when I had not yet learned how to accept this myself.
But I don’t hate her- much to the contrary- in fact- in that moment I felt grateful, and even a sense of a peace that had alluded me- because in that moment she gave me honesty- she allowed the first tier of our limbo to dissipate and she allowed us to move forward with knowledge which gave us confidence to set our own fate, as well as the fate of both of our children.
And then she gave me the book.
When we got Sevi’s diagnosis of Down Syndrome, as it will for many others, we were also joined by the diagnosis of a heart condition. For me, it was the heart condition, and not the Down Syndrome that really threw me. Not that accepting the Down Syndrome part was easy, just that the heart condition was more difficult.
Once I got to the point of reason, I realized I knew about education, and had so much experience within the world of people with special needs but a medical condition, especially one that had to do with one of the two most major organs in order to not only function, but to live, was terrifying. Interestingly, though Sevi could obviously live with Down Syndrome but not with his heart condition, long- term, it was Down syndrome that we got the most information about.
When the Geneticist had come, she brought me a book and the book was supposed to be “The Parent’s Guide” to what you needed to “successfully” parent a child with Ds. I accepted the book and as soon as we got home I began to read it diligently, believing it would give me what I needed to support my child.
What I found was something much different.
Reading this book was truly one of the most difficult things I have ever done. The content was discouraging and quite frankly, depressing. More often than not I found myself wondering why they had included a particular quote from a parent or a particular slant to the perspective they shared as the content was overwhelmingly negative. I wondered why the authors had not included more uplifting or encouraging quotes from families who had been there.
I began to wonder if I was kidding myself. Were there no positive stories to tell? Was life really going to be so bad?
I found myself getting depressed the further I read. My husband could see what was happening to me and he told me just not to read it. He is very matter of fact like that- he could choose to just tune it out. I could not. This was, after all, the book the doctor who counsels people who have babies with genetic anomalies gave us. If she gave it to us, I reasoned, it must have content I needed to know.
I started to live in two very different worlds. When I was alone with Sevi, when I thought about him, when I thought about other children that I had met who had Ds and the impact they had on their families and the way that they live their lives I was certain that this was absolutely something that we could handle. In these moments, the events that had led to our discovering how Ds would forever be part of our lives, seemed to slowly be distanced from the day I was in and the way I felt began to diminish in its intensity.
But then I would read, and I found I could not stop myself from reading, and when I read this book I became increasingly distraught and would find myself full of despair and full of concern about what Ds would mean for all of us.
At one point I told my husband that reading that book put me at my low- point and during that low- point for one small moment reading that book actually made me feel like jumping off of a bridge.
Soon I found that on the days that I didn’t read I would have a really good day and the days that I did I was getting so overwhelmed that it really seemed at times almost unbearable and that our lives had been completely turned upside down with no hope of getting back what we had once hoped we would have.
At the time I was reading I could not talk about this. I did not want to anyone to know how much I was hurting. The fact is that I did not really even want to admit to myself that I could ever have felt like that. Jumping off of a bridge?-Are you kidding? This was my baby- my beautiful baby- who was a part of me- and I loved him. How could it be that I could love him so much and still feel so bad?
Funny enough- though I was the one with the background in special education- it was my husband that rocked acceptance. To him it was a non- issue after the initial shock. He is highly involved but his perspective is different- he doesn’t worry about his future, agonize over what he can or cannot do- he just lives in the moment as he does for each of our children and throughout all aspects of his life.
When Sevi was just 4- months old he had his first heart surgery at CHLA. Though I am certain that there would have been a number of appropriate facilities for heart surgeries across the country having Sevi at CHLA was a comfort to me. Years earlier my youngest brother had a friend who had undergone a heart transplant in the same hospital. Brian’s surgery was vastly more complicated that Sevi’s was to be but having him in a place in which I had a connection, however distant, helped in a very difficult time.
A month later, I received a request from Brian’s mother who asked me if I would be willing to speak at a donor dinner to raise funds for the new building at CHLA which was to include a new Cardiac floor. I agreed instantly and though I had weeks to prepare my speech I found myself the day it was scheduled with nothing prepared.
I began to get nervous so with just an hour before I needed to stop everything and get ready, I sat down and looked at a blank screen. The next thing I knew I was done, and I had a fully prepared speech ready to go. When I read it back I was shocked that it had come so easily- that I had not actively thought it through, and that there was very little that I wanted to change. Later, as I delivered my speech to the group of assembled donors it just felt right and I knew that this was a small piece of a larger path I would take in telling our story.
That was the turning point for me. The moment I had waited for and actually asked my friend about- the opportunity that I yearned for when Sevi would just be my son and not always thought of as my son with Down syndrome.
Oddly enough- it was through sharing his story- our story about the way we live our lives- about how Down syndrome is a part of every day because it is something he lives with but it does not define him or us that released me from the hold it had previously held. Once I realized that Sevi’s life would have an impact far beyond what he was to our family, opportunities began to open up and connections were made.
Sevi is 8 now and could not be more sought after. Initial fears about family reactions were unfounded and he has personal, individual and close relationships with all family members. They appear to delight in his accomplishments, they never say if they are surprised by him and ask few questions- they just take him as he is.
He is very involved in his community- he attends street fairs and community events, karate lessons and tournaments, swimming and the occasional horseback riding lesson.- He is a third grader in a general education classroom at our local elementary school and they call him a Rock- Star and he knows it is true. He is well known on campus and has many friends, play dates and parties being at the top of his favorites list. His life is full and he lives it in a constant state of being “all- in”.
This one little boy has shaped our life, not how we once feared but in countless positive ways we could not have imagined. My life is exactly the same and completely different than I imagined it would be.
He has changed our perspective, shaped our values, connected us with groups of people we have never otherwise known, and reminds us daily of the power of perseverance, determination, the joys of success and the happiness that can be yours when you drop pretense and allow it in. He is exactly who he is meant to be- he is everything I never knew I needed- and I am so glad he found me and allows me to travel this journey by his side.
Kristin Enriquez is the proud mama to 8 year-old Sevi. Kristin has been in the field of Education for 20+ years. She has been a teacher and administrator in public and non- public schools and has run her own private programs. She currently provides consultative services to families, students, and professionals of various learning challenges, mostly those of individuals with Down syndrome through her business Sevi’s Smile. She recently launched a Social Media campaign to bring awareness and support to people with Down syndrome on Facebook and Instagram called Stand for 21. She can be reached via email at sevissmile@gmail.com. Sevi and his mother live with his father who is a Coordinator with Headstart Programs and Sevi’s three siblings- his sister Isa who is 10, his brother Gio who is 5 and his youngest brother Nico who is 2. Sevi is a firm believer that every day is a good day if it involves a dance party or a play date, and the number 100 and is even more fun with a pair of pants on your head while you do it!! Follow them on Instagram @standfor21
Related posts:
Leave a Reply