The “Shout My Story” campaign was created to give a platform for women to share their life- affirming stories and as a response to the “Shout My Abortion” campaign. “Shout My Abortion” sets out to normalize and destigmatize abortion, so women can proudly share their happy abortion experiences. What started as a Facebook post then became a Twitter # and is now a website and book promoted by Oprah Winfrey in July of 2018 by recognizing the movement’s founder Amelia Bonow in the “Inspiration” section of her magazine and website. Amelia’s abortion was in 2014 and that’s where MY story also begins. This is my story.
In 2014, my husband and I decided to run a half marathon. This was challenging for us, but after already having two girls I really wanted to get my body back in shape before having a third. The race went well. After the race we stopped and got a pregnancy test- I had to know if I could enjoy a celebratory drink and/or hot tub! I was ecstatic to learn we were expecting again and forgo those trivial rewards! And as this bud grew in my belly so grew my love for him or her.
Four and half months later, we went in for the big routine 20-week ultrasound scan. We were hoping to hear two things: that we were having a boy and that all looked healthy. Unfortunately, we only got half of what we wanted. Our son’s heart looked small on the left-side and we were referred to see a specialist for a fetal sonogram of the heart known as an ECHO. At 5 months/22weeks, our son was diagnosed with Hypoplastic Left Heart Syndrome (HLHS). His left ventricle did not properly form, and he would be born with “half a heart,” the most severe survivable congenital heart defect. He would not be able to survive without aggressive surgical intervention. He would have to undergo at least three major reconstructive open-heart surgeries beginning at birth. This was no murmur, no hole. This was major. When I learned about my son’s broken heart, my heart broke too.
We were not given just any baby boy. We were given a heart warrior. Our priest Father Jairo told us God calls people by name and that we needed to name him and start storming heaven on his behalf for a miracle. We wanted a miracle so bad! We named him Sebastian and call him Ian for short. Sebastian after St. Sebastian, a distinguished soldier under the Roman Emperor Diocletian around 300AD. He showed heroic courage, strength, and perseverance in the face of harsh persecutions. He is also the patron saint of athletes. We knew God would either heal him completely (and he would probably be a great athlete), or he would need to channel those heroic qualities to overcome the challenges ahead. Father Jairo had us start a devotion from his homeland of Colombia to the Divine Child Jesus called Divino Niño.
Why did God lay such a heavy cross on our little baby boy? On us? At the time, I didn’t know the answer. But I found peace knowing that just because I couldn’t see or understand the plan didn’t mean there wasn’t one. God sees the big picture and my faith gave me confidence that if God did not heal our son, he would use this for a greater good. We had four months of agony in the garden. Like Christ in the Garden of Gethsemane as he awaited his passion, his cross, my husband and I also asked the Lord, “to let this cup pass, but not my will be done, but yours.” I recently learned the root of the word passion in this context is acceptance.
God was giving one of life’s greatest gifts and I was resolute to enjoy my pregnancy! After all, he was happy in there with nature’s bypass- an extra blood vessel only the fetal heart has. Sebastian Jairo Naugle arrived right on time in one of the happiest moments of my life. He unbelievably smiled as my husband got to hold him shortly after birth, we have photographic evidence! He is still a happy go lucky kid.
We took a life-flight from Idaho to California at 4 days old and Ian had his first open heart surgery at 1 week old. During his surgery we went to the old part of the hospital and found a very little chapel. I think the hospital had laundry closets bigger than that chapel. But there were two little kneelers in a corner and two little statues. One statue was very likely older than us of the Sacred heart of Jesus, the other looking brand new was of Divino Niño… our devotion! Jesus was there reminding us, He was there. We gave Him our trust and He gave us his peace. Some babies fly through the surgeries and recovery. Ian did not. He came out of surgery looking very rough. Many tubes and wires keeping him alive.
I was a reflection of my son. As he struggled, I struggled. My baby was blue- literally, and I had the blues. My love for my son was not just tender it was fierce. If he could have survived on my sheer will and prayers he would have. He had so many people praying for him, maybe he did. I tried to comfort him by singing church songs (Catholic) from my childhood like You are Mine and Here I am. The lyrics go, “Do not be afraid I am with you…” “I love you and you are mine,” and “Here I am standing right beside you.” As I tried vainly to comfort Ian, God pierced my heart. I could feel that ferocious love I had for my son being poured onto me by God my Father. I never felt more intimately His. As I sang those words to Ian, he spoke those same words to me, “Be not afraid, I go before you always, come follow me, and I will give you rest.” These profound moments propelled me forward as there was nothing to do but carry the cross.
Over a spinach salad, I met another heart mom. Her baby girl was fighting too. She wanted me to meet her Josie. I walked into her room and lo and behold she had a statue of Divino Niño! Her aunt from El Salvador had dropped it off the day before! A few days later, on my 33rd birthday, Ian brushed death. As the medical team worked vigorously to get his oxygen numbers up, they were exhausting all options. They eventually “rocked” him by using a terrifying paralyzing agent called Rocuronium. This medication not only paralyzed him, but the small alveoli of the lungs, and his oxygen stabilized. We all took a deep breath with him! His second open-heart surgery was supposed to be months down the road, but it was clear some sort of surgical intervention would be needed soon. His second open-heart surgery was a few days later. The things he will never remember, and I will never forget. Now 33-year-old, Christ’s age at his death, I could feel the weight of the cross as heavy as ever, my birthday was a Friday in Lent. I was laid bare. And as I felt like I had hit rock bottom, I felt close to the Rock, and it was hard, but it was solid. My husband and I clung to each other and clung to the Rock. “No storm can shake my inmost calm, while to that rock I’m clinging,” lyrics from How Can I Keep from Singing were a soundtrack for our life as we constantly kept our eyes on Christ.
Suffering is so much easier to bear when we know that it is finite. My husband and I were buoyed by the fact that this storm would not last forever and there would be brighter days ahead. If God is your co-pilot switch seats! Day after day, we put it all in God’s hands …and we saw His fingerprints! After Ian’s second surgery, our heart warrior was a “flyer.” He got moved from the room closest to all the emergency aids, to a room near the end of the hall, next door to Josie. Josie-the-girl-next-door. We had a blessed assurance that God has a purpose for Ian’s life not his death. We spent weeks working through feeding issues in a step-down unit and discovered Ian had a paralyzed vocal cord as a side effect of when they reconstructed his aorta during heart surgery. The vocal cords are essential to protecting the airway when swallowing liquids. Given babies’ diets are liquid, Ian was required to be tube fed through a g-tube and although I could pump, sadly I was never allowed to nurse him.
Ian’s heart journey was quite a wild ride especially the first 5 months. At four months, he had his third open heart surgery, stage two of his heart repair. Once again, he struggled to recover. He had delirium and his heart was just not quite right. He ended up getting a stent placed in his left pulmonary artery which greatly helped. However, the day after his stent placement, we realized he wasn’t moving the left side of his body and he was blind on the left side of his vision. I was devastated! Through his trials I know God had been telling me to dream in color for our baby boy, but this was not our rainbow! I thought: this changes everything. I thought partially-sighted and handicapped people can’t drive cars, they can’t play baseball, I was teetering on despair for my son’s future, our future. My husband, my champion, my unsung pillar of strength, he told me this changes nothing. Our job is the same. We love our son. Half a heart, hemiplegic, no matter what we just keep loving him!
I went to Mass and the message was, “God will provide for all that you need.” Do I need a fully able-bodied son? I knew the answer was “no.” What did God think? What would He provide? Phrases, “Jesus, I trust in you” [St. Faustina] and “Your will is my paradise” [St. Lucia of Fatima] came to mind as they commonly did between my husband and I as we accepted our sufferings with tears streaming. Inspired by St. Jacinta we put on a brave face and offered up our sufferings like she did. A few days later he showed marked signs of recovery and a week later when he was healthy enough for an MRI. There were no signs of permanent brain damage from a stroke.
There were other twists and turns on the roller coaster, but you get the idea. Ian had his fourth (and hopefully final) open-heart surgery at age 3. The vast majority of Ian’s life he has been pretty normal. Looking at him you would never guess what he’s been through. We made it through those rocky first years and now have the awesome kid we dreamed of. He recently celebrated his 6th birthday. He is sweet, funny, energetic, and did I mention handsome? That smile he was born with? It’s contagious! He is a light, not just in our lives, but the world! We are so blessed by him. He is even one of the best players on his Kindergarten soccer team! Half a heart, full life!
Ian recently brought home some schoolwork where he had to finish the sentence, “I am special because…” He wrote that he was special because “My mom loves me.” Of course, it melted my heart the sweet little picture he drew and all. If he really knew how I have loved him fiercely! I physically ran a half marathon for him. Then my mind and soul ran an Ultra (Ultras are races longer than 50 miles)! But truly, the reality is that before God knit him in my womb, his soul was born out of the heart of God. God knew him, God loves him. God made him special. And we all are loved with such intensity by God! When you look at him hanging on the cross, do you see how wildly he loves you? If you can see, can you feel it?
This journey though trying has brought many blessings. Like gold tested in fire our marriage and our faith found new strength, new beauty, and new growth. This has manifestly enriched our lives. Inspiration ripples out from our little heart hero who just keeps living life full speed ahead. We have learned so many things! Most especially that every day is a gift. And every life is a gift. We don’t know how many days we’ll get, but we are thankful for each one. This is my story, but it is also God’s story. As Mother Teresa said, “I am a little pencil in God’s hands. He does the thinking. He does the writing.”
Last year, I read in our local newspaper, a story that sent chills down my spine. It was a story about a woman named Hevan who found out at 5 months pregnant that her son would be born with half a heart (like me). She loved him (like me), and did not want him to suffer (like me), she named him Sebastian (like me). However, she chose to get a late term abortion and had to go out of state to do so (the point of the article, for more read my Let Abortion Break Your Heart blog). I wish she would have trusted God with her story and let her Sebastian have his own story. I know a few things about broken hearts, and I know that every abortion breaks God’s heart. I also know that with God’s ferocious love comes a torrent of mercy for each and every one of us.