“I vividly remember the scene as if it happened yesterday.
The doctor had just arrived to discuss with us the results of our ultrasound. Arabella had a 98% chance of having Down syndrome, as determined by a blood test done a couple of weeks earlier. Ultrasonography was a nuchal translucency (NT) test performed to help confirm the diagnosis of Down syndrome. The doctor’s words hit me like a ton of bricks: The NT test for baby Arabella was consistent with a diagnosis of Down syndrome. However, he was somewhat prepared for that. What I didn’t expect was to learn that she also had dropsy, a condition characterized by the accumulation of fluid around the neck, stomach, and skull.
I started sobbing immediately and pain and despair washed over me. I knew the odds were against us and that I would probably never meet my little girl on earth. We were referred to a high-risk obstetrician and received a new ultrasound every two weeks to determine if our dead baby’s heart had stopped beating so we would know when to deliver. Subsequent ultrasounds revealed that fluid buildup was spreading to his heart, lungs, stomach, and extremities. The ultrasound also revealed heart defects. He allegedly suffered from heart failure. Arabella was estimated to have a 5-10% chance of being born and enduring childbirth. At about 20 weeks, a miracle happened:
Our name of ???????????????? It’s Arabella Eun Sook Kim. The meaning of the name Arabella is ‘yield in supplication’. Countless people fervently prayed for her. Her middle name is derived from the Korean name of my recently deceased mother-in-law. Therefore, this denomination is significant for us. She arrived at 12:28 p.m. on July 17, 2019, weighing 7 pounds, 1 ounce. While she was in labor, the Neonatal Intensive Care Unit (NICU) specialist met with us at the hospital and informed us that there was a 50% chance that Arabella would be admitted to the NICU due to the need for oxygen, difficulties feeding or any other complications. But this baby defied all predictions and came out healthy, and it was the easiest of my three deliveries. They were able to immediately place her on my chest (instead of rushing her to get her vitals, as they did with my other two typical children). There was no need for the neonatal intensive care unit, no need for supplemental oxygen, and she was able to breastfeed almost immediately.
As soon as I held her in my arms for the first time, I was overwhelmed by her beauty and filled with gratitude. And my worries about Down syndrome were immediately put to rest. He was simply grateful that he had come into the world without incident and in good health.
When I found out that our unborn daughter had a greater than 98% chance of having Down syndrome, I was devastated and terrified. Despite being a registered nurse, she lacked knowledge about this condition. All the information I read about Down syndrome seemed terribly negative, and I had many preconceived notions and ideas about what this entailed. I never thought this could happen to me. This was something that only happened to other individuals. I even felt empathy for the mothers I met in public who had children with Down syndrome.
What would my life be like? She did not want to be the mother of a child with special requirements. I was extremely exhausted. (We had encountered numerous nutritional difficulties with my other two children. My youngest son had an NG feeding tube for his first year of life, and I suffer from Chronic Fatigue Syndrome.) I was worried that I would lack the necessary strength, stamina, and patience. From time to time, I believed that my existence as I knew it would end. However, he was determined to give this kid a chance. I chose to turn my worries over to God and have faith that everything would be okay.
If only he could have fast-forwarded to the day Arabella was born and up to the present, it would have been ideal. Because then I would have been able to see that there was nothing to fear and that Arabella’s presence would really make my life immeasurably better. She is one of my greatest blessings in life, and I now understand why the phrase “the lucky few” is used so often in the Down syndrome community. Those of us who have a family member with Down syndrome are very lucky.
I’m sure other mothers who see me around feel sorry for me, just like I do. Please, however, don’t feel sorry for me. I am lucky and grateful to have Arabella, and I wish others could experience the same love that I did. I never imagined that having a baby with Down syndrome would be one of the best things that ever happened to me. Arabella is a brilliant ray of light that gives me endless pleasure. I refer to her as my kind and beautiful soul. But make no mistake: this kid is a fighter with a streak of brashness and tenacity. I wouldn’t change a thing about the fact that she’s smart, powerful, and just plain remarkable.
I am passionate about proving that a person with Down syndrome is just as attractive, amazing, and deserving as you and me. Down syndrome is not cause for alarm. I wish to alter society’s perceptions of what Down syndrome really entails. Today, people with an extra chromosome are considered less desirable than they once were. Society claims that their lives will be limited, that they will be a burden, and that they will all be the same. Most are not even given the chance to live in this world to demonstrate their potential. When Down syndrome is diagnosed, most pregnancies (around 67% in the US and 90% in the UK) are terminated. Most of the time,
I created an Instagram account when Arabella was born to share her narrative and our family’s journey. Through this account, I hope to show that a person with Down syndrome deserves it. I wish to inspire and provide optimism. I hope to show that each child with Down syndrome is unique and that the possibilities are limitless. They should not be classified, categorized, or limited based on your diagnosis. I want to demonstrate the reality of having Down syndrome. Despite the fact that some items may look slightly different, you will likely find it quite typical and familiar. We depict the life of a family with three young children which, as you might imagine, is often messy and chaotic, often funny and silly, occasionally full of obstacles, but overall beautiful.
It has been amazing and moving to interact with other parents who have received a prenatal or new diagnosis of Down syndrome. I can assure you that you are not alone, that I have experienced many of the emotions that you are experiencing, and that life can still be beautiful even though this diagnosis does not match your expectations.
Several months ago, I also decided to launch #OnesieWednesday, where every Wednesday I show off a statement jumpsuit I make for Arabella. Through these onesies, I hope to proclaim to the world how wonderful and deserving she is, give her a voice, stimulate conversation, and ultimately contribute to acceptance of Down syndrome. I am also in the process of starting a second effort. I want to find a method to connect with parents who are receiving a prenatal diagnosis of Down syndrome and allow them to meet Arabella in person (once this pandemic has passed!). They can then make a decision after meeting a person with Down syndrome in person.
For any parent whose child has been diagnosed with Down syndrome, don’t panic. Your situation is about to improve. You will experience one of the truest and deepest forms of love you can imagine. Your child will be a tremendous blessing and gift. You too will recognize his good fortune and understand its significance. Take the time to get to know a person with Down syndrome for who they really are, rather than seeing it as a condition or a stereotype. They are remarkable and deserving, and we have much to learn from them.
I remember a telephone conversation I had with my brother when we received the good news that Arabella’s dropsy had completely disappeared. His words were: “I’m happy for you” and “I couldn’t wait to meet her.” I feel immensely moved by his words, which is how I feel today. I can’t wait to see who Arabella will become and how she will positively influence and transform the world around her. I am sure that she is here for a purpose and she has an extraordinary mission simply by existing. It is amazing to see that she is already a beacon of light in this often dark world and that she has already made a positive impact on others in her short time here. I am so incredibly proud of her and so lucky to be her mother!”
This story was submitted to Love What Matters by Tiffany Kim of Phoenix, Arizona. You can follow her journey on Instagram. Do you have a similar experience? We would like to hear about her important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories and to YouTube for our best videos.
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