First Time Retreat Attendee Article

As a little girl I have always been in love with the idea of life; making friends and meeting new people. The world inspired me. I always wondered about cultures, languages, people’s habits, and lifestyles. As an immigrant I have had the privilege to experience the good and the bad. Most of what I’ve experienced has taught my life lessons I use today. The biggest one is acceptance. After being excluded throughout my adolescence years I knew that I would always be the one to include those that were not. 

Fast forward to 2018, after almost a year we finally got pregnant with our first. My pregnancy was a breeze. Aside from the beginning stages of exhaustion which I felt mostly in the evening I had no other symptoms. My energy during the day was through the roof which helped in running my clothing business. Erik and I were thrilled and kept guessing what the baby’s personality would be like. After our first ultrasound, I was informed I needed follow up ultrasounds due to the shape of my uterus. They were concerned that the baby my not have enough room to go full term.  After months of ultrasounds at about 6 months I was cleared. At my 7-month appointment I was sent down for an immediate more detailed ultrasound as the blood flow through the umbilical cord didn’t seem like it was going to the baby, however, after several ultrasounds and monitoring that too was ruled out. 

My water broke on 10/24/2018 and we rushed to the hospital. I recall being slightly nervous over the early arrival of our baby but not once did I think about what lied ahead. It was a little passed midnight. We called our parents to inform them of the news. My parents came within 20 min of my call and Eriks were already on the road as it was a little over an hour drive. When we arrived to the hospital I was quickly rushed in. At that point I was 3.5 cm dilated. Unfortunately, I learned the hard way not eat prior to giving birth. My cravings of IN and Out burger did not settle well once we I was settled in my room. Aside from being nauseous during birth and Bella having a hard time coming out I did not have other complications. My labor all in all was 12 hours. After pushing for less than 45 minutes our rare diamond made her grand entrance 5 weeks early. I recall looking at Bella and thinking she looked different. She was swiftly taken. The room filled with the loudest silence I had ever heard. My delivery doctor stepped out, confusion on everyone’s face, and no congratulations. The NICU was already there and immediately took Bella for evaluation. Doctors and nurses were coming in and out, the machines were beeping, Bella was crying under the heat lamp with 5 doctors around her, and the bright lights in the room all of a sudden felt like interrogation lights. I was confused, broken and crying. I looked up to my mom and husband for comfort only to find then as concerned and confused. My mom walked over to me to hold my hand. I remember asking her if I ever can have a normal birth, and she said everything was going to work out. Unbeknownst to us Isabella was born with a rare syndrome. 

As the team was preparing to head out, I asked if I could hold my baby. I looked at Isabella and she looked into my eyes and I said whatever it is you have I will always protect you and give you the best life. After what felt like hours I was reunited with Erik and Bella. It was the sweetest skin to skin I had ever witness. Our baby girl looked so vulnerable and little. My husband looked up at me and said, honey I think I diagnosed our daughter, she night have Treacher Collins or Goldenhar syndrome. Within a day, with the help of my best friend we were transferred to Oakland Children’s Hospital where her amazing care began. The stars aligned. 

The craniofacial surgeon happened to be great friends with one of my really good friends. He ended up repairing Bella’s palette. My uncle, a gastrologist, ended up saving us couple times with Bellas gtube. Within two weeks of being in the NICU Eriks boss’s daughter was hired as Isabella’s night nurse. They say it takes a village to raise children and our village kept growing. With the help of our parents, families, and friends, we were able to overcome the hardest times. As you all know it takes time to process everything. Just like most of you, we were in survival mode. Extended family and friends had heard we had had Bella and that things did not go as planned but we hadn’t had time to inform them about the details of her care and our birth. One evening, as I was sitting bedside and reading Bella a book I had a moment. I thought to myself if my daughter has to endure this much, she has to be supported and celebrated by everyone. I went public with my birth and slowly called family and friends to share with them our story and new normal. I think the most challenging part of motherhood for me was the beginning. I learned that life can’t always go as planned. I learned that the path you want for yourself sometimes is not the path that you will get and that the challenges you face you will learn to overcome them.

Bellas love for life and her energy is so contagious that she affects everyone she meets. Watching her interact with the world is the most rewarding thus far.

The outpouring love we received was warm and overwhelming. With everyone’s help we built the foundation to educate, spread kindness, and overcome difficulties. As I shared our story via social media, I started to connect with families all over the world.  We became part of the Treacher Collins Facebook community and started to learn about events that support children and families that share a story.  We had learned about CCAKIDS and had been invited to the Retreat several years in a row. Honestly speaking, we weren’t ready. I knew the Retreat would be an overwhelming but beautiful experience. After receiving the dates for the 2025 Retreat we immediately put the dates in our calendar and made accommodations to attend. Leading up to the trip we were excited and nervous. Our concern was mainly how Bella would process the experience. We knew we would be emotional, we knew our youngest would be excited to play with everyone his age, and we knew Bella would enjoy making new friends. But what we didn’t expect is to leave the event with a bigger family. 

The first day was the most overwhelming. Many of you probably would say the same. What makes it overwhelming is seeing how vulnerable we all were. How we all have a story to tell. I remember telling my husband I needed a moment to myself in the room after we had met everyone. I was processing. I sat in the room, cried, and thought about everything everyone has been through. Watching our daughter interact within the room with grace and curiosity made me emotional. Shortly after Bella joined me. I asked her if she had any questions. She was teary eyed and said no. She just hugged me and laid with me. The following day we really enjoyed the symposiums. The information we received was insightful. The kids loved everything they did that day and all the new friends they made. At lunch break we went back upstairs and I once again approached Bella on how she felt and if she had any questions. She said “mommy I know what you’re going to say, that we are all different in our own way.” I said Bella ask mommy your question and I will do my best to explain. Bella surprised me with real questions. Just like me she was taking it all in. Fast forward to a month later, as we were getting in the car Bella said “mommy thank you for taking me to Bellevue, I now know there are people like me with hearing aids and I don’t care what other people think about me.” In that moment, I knew that the trip was really a success. We left CCAKIDS feeling so wholesome and happy. We shared laughs, tears, anger, and stories. We made memories and created new ones. Our village grew bigger and together we are stronger.

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