Why She’s Not Going to ‘Take Care of’ Her Sister With Down Syndrome

Seeing my two daughters together fills my heart with such joy. They truly admire each other and you can see it in their young eyes.

By the time our oldest, Adelaide, turned a year old, we knew she was meant to be an older sister. We tried to get pregnant, suffered an early miscarriage and finally, after nine months of trying, baby number two was on her way.

We shared the good news at Adelaide’s second birthday. She opened a gift with a shirt that read “Best Big Sister.” We took many photos and video of the reveal. It was so wonderful to share the news with family and friends.

About three weeks after the “reveal,” we were given the Down syndrome diagnosis. A little glimmer of delight was also given that day. Adelaide was going to have a baby sister. Two girls? Oh what dreams I had. But she has Down syndrome. What will that mean for Adelaide? Will she feel restrained from pursuing her dreams, feeling the burden to care for her sister? Would they have a relationship like my sisters and I do? Would they have that closeness? Would Adelaide resent having a sibling with a disability?

We still embraced the dreams and plans of having two little girls. We talked to Adelaide about how fun it’s going to be with a little sister. As we would play, eat, take baths and go to bed, she would ask, “Where’s baby sister?” That question melted my heart.

Five weeks after the Down syndrome diagnosis, we received the most devastating news of our lives. Our unborn baby at 18 weeks gestation was suffering from non-immune fetal hydrops. The condition was likely fatal. I fell deep into a depression as I carried this baby that was going to die. In my anger and pain, I deleted the photos and video of the pregnancy reveal.

Three days after that diagnosis, I was driving Adelaide to daycare. As she sat in the back seat, staring at the passing trees, cars and houses, she asked, “Mommy, when is baby sister coming?” Those words were like a dagger into my heart. Not only am I losing a child. She is losing a sister. A sister she never knew. To function, we ignored the question and quickly changed the subject. She eventually quit asking.

But my belly continued to grow as Adelaide’s baby sister was determined to make it into the world. That terrible fatal condition was resolving on its own. The sun finally began to peek out from behind the dark angry clouds that filled our lives for several weeks. Adelaide was going to be the big sister we hoped she would be. We eventually reintroduced the topic. Even though months passed, she showed no signs of confusion. She just continued where she left off, in her sweet 2-year-old high-pitched voice: “When is baby sister coming?”

A lot of people have told us that we were meant to be Lorelei’s parents. I don’t know if “meant” had anything to do with us being her parents, but I do know Adelaide was meant to be Lorelei’s sister. They look at each other, deep into each other’s eyes. They know each other. They always have.

Adelaide speaks for her sister. When Lorelei is upset or has a new behavior, gesture or sound, Adelaide interprets it. When Lorelei is crying, Adelaide runs to her, wraps her arms around her and says “It’s OK, it’s OK, I’m right here. I’m right here.” They light up at each other’s mere presence.

Adelaide tells me about how she will teach Li Li how to walk, talk and ride a bike. She tells me how much she loves her baby sister. A couple of days ago, I was driving the girls to daycare and Adelaide said, “Mommy, I just love…” and she paused. I thought, Oh, she is going to say Mommy. I was wrong. Oh well. She continued, “Mommy I just love Li Li bird (one of the many nicknames we have for her). She is such a cutie pie.”

I feel guilty now for having any thought that this would impact Adelaide negatively. The sorrow I felt for myself, my husband and for Adelaide at the possibility that this little beauty would not make it, put it all in perspective for us. Lorelei was meant to be. She was meant to be our daughter and she was meant to be Adelaide’s baby sister. Adelaide is not going to take care of Lorelei because she has Down syndrome. And she is not going to “take care of her” at all. She is going to “care about” her because she is her sister.

My daughters totally love and accept each other because they are sisters. That relationship is not deterred or defined by a diagnosis of Down syndrome.

The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.