“I vividly remember the scene as if it happened yesterday.

The doctor had just arrived to discuss the results of our ultrasound with us. Arabella had a un 98% chance of having Down syndrome, as determined by blood tests performed un couple of weeks ago. Ultrasound was a test for physical tranucencia (NT) 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 compatible with the diagnosis of Dow syndrome. However, I was somewhat prepared for that. What she expected was to learn that she also had dropsy, a condition characterized by the accumulation of fluid around the neck, stomach, and skull.

I immediately began to sob and was overcome with pain and despair. I knew that the odds were against her and that she would probably cook my little daughter into the ground. We were referred to a high-risk obstetrician and received another ultrasound every two weeks to determine if the dead baby’s heart had stopped beating so we knew how to give birth to the baby. Subsequent ultrasounds revealed that the fluid accumulation was spreading to his heart, cheeks, stomach, and extremities. The ultrasound also revealed heart defects. Suffer from heart failure. It was estimated that Arabella had between un5 and un10% chances of going into labor and suffering. At approximately 20 weeks, she had a miracle: the fluid completely disappeared and no significant heart defects appeared.

Our name of ???????????????? It’s Arabella Eun Sook Kim. The meaning of the name Arabella is ‘yield the supplication’. I nnumerable people pray fervently for her. Her second name is derived from the Korean name of my recently deceased mother-in-law. Therefore, this decomposition is significant for us. He arrived at 12:28 p.m. m. On July 17, 2019, it weighed 7 pounds and 1 ounce. While she was in labor, the specialist at the Neonatal Intensive Care Unit (NICU) 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 oxygen deficiency. or, difficulties of feeding or other complications.

But this baby defied all predictions and came out safe, and she was the easiest of my three births. I could immediately place her on my chest (instead of holding her to obtain her vital signs, as I did with my other two typical children). There was no need for the quality of intensive maternal care, nor simple oxygen, and she was able to breastfeed almost immediately.

Thanks to Tiffany Kim
  Even 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 Dow syndrome were immediately put to rest. I was simply grateful that he had arrived at the same time without accidents and needed health.

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  When I learned that my unborn daughter had a greater than 98% chance of having Dow syndrome, I was devastated and terrified. Despite being a registered nurse, she lacked knowledge about this addiction. All the information I read about Dow syndrome seemed to be terribly negative, and I had a lot of misconceptions and preconceptions about what it entailed. I never thought this could happen to me. This was something that only happened to other people. I also felt empathy for the mothers I discovered in the public who had children with Dow syndrome.

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What would my life be like? I did not want to be a mother to a child with special requirements. I was extremely exhausted. (We had encountered significant difficulties with childbirth with my other two children. My youngest son was on NG soda during his first year of life, and I suffer from Chronic Fatigue Syndrome.) I was worried that I would lack the necessary strength, endurance, and patience. From time to time, I believed that my existence as I knew it would end. However, he was determined to give this boy a chance. I chose to give my worries to God and have faith that everything would be okay.

If only I could have fast forwarded to the day Arabella died and 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 better for me. She is one of my greatest blessings in life, and now I realize why the community has Dow syndrome and the phrase “the lucky few” is so common. Those of us who have a family member with Dow syndrome are more fortunate.

I’m sure that other mothers who see me around feel sorry for me, just like me. Please, yes, sorry for me though. I am fortunate and grateful to have Arabella, and I wish that others could experience the same affection that I do. I never imagined that having a baby with Dow syndrome would be one of the best things that had ever happened to me. Arabella is the ray of brilliant light that gives me endless pleasure. I refer to her as my kind and beautiful soul. But she was not mistaken: this boy is a fighter and has a streak of nerve and tenacity. I wouldn’t change anything about the fact that she is smart, powerful and just drinkable.

I am passionate about proving that someone with Dow syndrome is just as attractive, amazing, and deserving as you and me. Dowpo syndrome is cause for alarm. I want to alter society’s perceptions of what Dow syndrome really entails. Today, people with an extra chromosome are considered less desirable than they once were. Society affirms that their lives will be limited, that they will be burdensome and that they will all be identical. Most are even given the opportunity to live in this way to demonstrate their potential. When Dow syndrome is diagnosed, the majority of pregnancies (about 67% in the US and 90% in the UK) are terminated. Most of the time, the only information parents are given about whether to abort or not comes from a doctor who has probably caught the person with Dow’s syndrome or a cold.

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I created an Instagram account around Arabella to share her story and her family’s journey. Through this letter, I hope to show that a person with Dow syndrome deserves it. I wish to inspire and provide optimism. I hope to show that every child with Dow syndrome is unique and that the possibilities are limitless. The definition of your diagnosis should not be classified, categorized or limited. I wish to demonstrate the reality of having Dow syndrome. Despite the fact that some items may seem slightly different, they are likely to be quite typical and familiar. We represent the life of a family with three small children who, as you can imagine, are sometimes messy and chaotic, sometimes fun and silly, sometimes full of obstacles, but generally beautiful.

Thanks to Tiffany Kim

It has been incredible and heartwarming to interact with other parents who have received a pre- or post-natal diagnosis of Dow syndrome. I can assure them that they are not alone, that I have experienced many of the emotions that they are experiencing and that life can still be beautiful even though this diagnosis matches their expectations.

Thanks to Tiffany Kim

Several months ago, I also decided to launch #OnesieWednesday, where every Wednesday I show off the eye-catching outfit I make for Arabella. Through these rompers, I hope to proclaim to the world how wonderful and deserving she is, give her a voice, stimulate conversation, and, in the last instance, contribute to the acceptance of Dow syndrome. I am also in the process of starting the second effort. I want to find a way to connect with parents who are receiving a pre-natal diagnosis of Dow syndrome and allow them to meet Arabella as a person (once this pandemic has passed!). One can then make the decision after learning about the person with Dow syndrome.

Thanks to Tiffany Kim

For any parent or child who has been diagnosed with Dow syndrome, so be it. The situation is about to improve. You will experience some of the truest and deepest forms of love you can imagine. Your son will be a tremendous blessing and a gift. You will also recognize its strength and understand its meaning. Take the time to get to know the person with Dow syndrome for who they really are, instead of seeing them as greed or a stereotype. They are worthy and deserving, and we have much to learn from them.

Thanks to Tiffany Kim

 I remember the phone conversation I had with my brother when we received the news that Arabella’s dropsy had completely disappeared. His funny words: “I’m happy for you” and “I couldn’t wait to cook her.” I feel moved by your words, which is how I feel today. I can’t wait to see who Arabella will become and how she will positively transform the world around her. I am sure that she is here for a purpose and has an extraordinary mission simply by existing. It is amazing to see that she is already a beacon of light in this dark world and that she has already had 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 their journey on Instagram. Do you have similar experience? We would like to hear about your important trip. Send your own story here. Be sure to sign up for our free email newsletter for our best stories and YoTbe for our best videos.
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