‘Hold her and look at her.’ The daughter I thought we’d have died, but my heart melted.’: Mom says daughter with Down Syndrome is a ‘blessing’

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“On the night of March 18, my husband Wade and I arrived at the hospital so I could be induced since I was 4 days overdue. Due to Covid, my mom couldn’t come with me as planned. I got there, and I had Pitocin started immediately. As they were getting me prepped, Wade and I started talking about what our daughter might look like and how she might be. I had dreamed of having a baby girl for years, and I was really praying for this moment.

A pregnant woman stands with two other people
Courtesy of Alexandra White

During my pregnancy, I had suffered from a subchorionic hematoma, which caused a tremendous amount of maternal bleeding and put me at a very high risk of miscarriage. Therefore, making it to this moment felt like a miracle. The contractions were getting bad, so I asked for an epidural. My epidural didn’t work as planned because my blood pressure was literally all over the place, I started feeling really lightheaded, and my whole body went numb. I struggled to remain conscious as my blood pressure was dropping.

After they removed the epidural, contractions were coming in very strongly. They were not stopping. It was literally one after another, and I was crying in such pain. Our little baby girl was in distress. You could tell she did not want to come out! I started pushing and lost track of time. On March 19, 2020, at 7:39 a.m. our Liliana ‘Lily’ Rose White was finally born bright red and screaming. They put her on my chest the moment she came out, then they took her to be evaluated as usual.

A new born baby girl swaddled in a blanket
Courtesy of Alexandra White
A mother sits in the hospital with her newborn baby girl
Courtesy of Alexandra White

While the pediatrician was evaluating Lily, she mentioned her having low muscle tone. Once they brought her back to me, Wade said, ‘Look, Alex, I think she might have Down Syndrome.’ I immediately told him he was wrong and he was just overanalyzing things. We enjoyed her for about 10 minutes, then the nurse said the pediatrician would like to speak to us. We wondered why but didn’t think much of it. When the pediatrician came in, she said, ‘I believe your baby may have Down Syndrome.’

A newborn baby girl swaddled and wearing a bow on her head
Courtesy of Alexandra White
A newborn baby girl lying next to a marker that says 8lb
Courtesy of Alexandra White

The words after that were a blur, but I do remember us asking what the chances of her being wrong were. The happiness in that room turned into such hurt, sadness, and worry. In my mind, the daughter I thought we were going to have died. I could not stop crying that day, and I shut myself away from the world. I called my mom immediately, hoping she could take the pain away, and I asked her to tell all of my family members because I just couldn’t do it. Many friends of ours were calling and texting to see how I was doing. All those calls and texts went unanswered because we didn’t know how to give them the news of her birth.

I kept on thinking, ‘How will we be able to be good parents to a child with a disability? And how will this affect our son, David?’ As I was hearing all the happiness and joy of babies being born all around us, I kept thinking what happened to us was just not fair. I went to sleep that night hoping this would be a nightmare and everything would go back to normal when I woke up. But it didn’t.

Parents hold their young son between them
Courtesy of Alexandra White
Parents sit with their young son and newborn baby
Courtesy of Alexandra White

The next day, Wade left the hospital to go check on our son, David, who was 4 years old at the time. Hospital policy at that time allowed for different visitors to come in and out as long as it was just one at a time. After Wade left, my mom came to visit. My dad was able to see Lily and me after my mom left. I was glad they both came because I really needed them since I was so vulnerable during these moments.

I didn’t really get to hold Lily and soak her in because I was in such emotional pain the day before. However, after my mom told me to hold her and look at her, I just couldn’t stop. When I did, I realized how beautiful our Lily Rose was. She was a little bundle of love. My heart started to melt.

A little girl with a pacifier and a knit hat
Courtesy of Alexandra White

Over the next few days, I realized God didn’t give us what we expected, instead, he gave us what we didn’t know we needed. And, boy, did we realize we needed that little girl. This was the baby girl we prayed for so hard after almost losing her to my subchorionic hematoma several times throughout my pregnancy. When Wade came back, I told him to hold her for a while. After he held her, he couldn’t stop gazing at our beautiful baby girl. He realized how much of a blessing she was and how grateful we were to have her.

Before we left the hospital, they did some blood work on Lily for genetic testing to confirm whether a child has Down Syndrome or not. It took roughly 1 week for the result to come back. That week was difficult because we kept on focusing on her characteristics. Sometimes we saw some Down Syndrome characteristics, and other times we didn’t.

The moment we brought her home, our son David and both our parents were waiting for us in our front yard. David ran up to the door of our truck waiting for us to get his sister out. I will never forget how happy he was at that moment. He could not wait to hold her and kiss her. They have been inseparable ever since.

A little boy holds his baby sister
Courtesy of Alexandra White
A little boy kisses his baby sister on the cheek
Courtesy of Alexandra White
A little boy and his baby sister lying on a bed
Courtesy of Alexandra White

A week later, when I took Lily to the pediatrician I was told her blood work came back and she did have Down Syndrome. My heart sank a little since half of me was still in denial. Most of it was because of the fear I had of the unknown. I called Wade and my family to tell them the news. After speaking with our support group, I realized everything was going to be okay.

The following weeks were overwhelming as we had various appointments to check on the health of our baby girl. Luckily, she is healthy for the most part. As the weeks went by, we started falling more in love with our Lily Rose. Now, we know that this little girl is more than we ever asked for. The amount of love, smiles, joyfulness, and sweetness she gives us is way more than what our hearts needed.

A little girl wearing a red dress and bow
Courtesy of Alexandra White
Parents hold up their son and baby daughter
Courtesy of Alexandra White

Seeing her and her brother interact with each other makes our hearts want to explode. She is constantly looking for where David is in the room and when she finds him, she starts jumping with such happiness. David wants to do absolutely everything with his sister, Lily, and constantly tells us how much he loves her. He is barely getting to understand what Down Syndrome is, but that does not affect his feelings for his sister whatsoever.

A little boy kisses his baby sister on the forehead
Courtesy of Alexandra White
A little boy holds his baby sister on his lap
Courtesy of Alexandra White

So far, our journey of being a parent of a child who has Down Syndrome has been an overall wonderful ride with some speed bumps every once in a while. We are constantly reminding ourselves it will take longer for Lily to achieve her milestones, but she will achieve them. Throughout this journey, we are learning to be more loving, patient, and understanding. We are also learning to enjoy the small things in life. As a mother, I do have my difficult days when I worry about the unknown road ahead of us, but looking at the smile on Lily’s face when she becomes happy about things I often take for granted eases the worry away.

A little girl with down syndrome wearing a tutu
Courtesy of Alexandra White

Now when I look back at the day Lily was born, I wish I would have known how much of a blessing she truly was. I wish I could have told myself how she would make all of us better people. I wish we would have known how lucky we truly were to have her as a part of our family and that the journey we were about to embark on isn’t as scary as it seemed at first. We are still new to this journey, and we cannot wait for all the joyous moments we will experience with Lily.

Parents sit with their two children on porch steps
Courtesy of Alexandra White

Now that I have learned more about Down Syndrome, my words of wisdom to new/expectant mothers of babies with Down Syndrome is to use your support system, reach out to your local Down Syndrome organizations, and snuggle that sweet baby of yours because they grow up so fast. Down Syndrome can sound scary at first, but you will soon learn your sweet little baby is a blessing just like every other baby is. Last but definitely not least, congratulations on your sweet beautiful baby.”

A baby girl wearing overalls and a bow on her head
Courtesy of Alexandra White

This story was submitted to Love What Matters by Alexandra “Alex” White from Sanford, North Carolina. Follow her on Instagram and Facebook. Submit your own story hereand be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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