By Paul (age 8), James (age 11), Kathleen (age 13), and Liz (age 17)
Almost six years ago, your sister was born. She was an adorable baby, and from the moment you held her in the hospital she stole everyone’s heart. You knew people from school who had Down syndrome, but there was still a lot left unanswered about how Down syndrome would affect your family’s future- will it change the family dynamic? Don’t worry- every time a child is born it changes the family dynamic, and Annie will be no different. Don’t imagine her as being like the other children you’ve known with Down syndrome- you’ll watch her blossom and come into her own unique personality. Soon, she’ll become the center of your family life.
There are many things which you might have heard about Down syndrome. Technically, you understand the diagnosis- an extra copy of the twenty first chromosome. What you don’t understand is how that will change her life and yours. Although it affects her speed at learning, it does not affect her personality, which remains as unique and vibrant as ever. People who only understand her as someone who has Down syndrome miss what makes our sister unique. So we would like to tell you why Annie is the cutest little girl ever.
Annie loves music. Her favorite movie is Frozen, and she knows every scene. We once saw her enact the entire scene of “Let It Go”, keeping time to the music and reenacting what Elsa was doing on screen. She also loves Sofia the First and Tangled. She hates getting her hair combed unless mom sings a song from the Disney movie Tangled.
Down syndrome has made talking a challenge for our sister, but she has a strong ability to communicate nonetheless through a combination of speaking and sign language. She is often heard standing at the bottom of the stairway and yelling “Ma! Ma!” until our mother comes down and helps her with whatever she needs. Recently, her favorite words have become “hockey”, “cup”, and “Crosby,” in honor of the Penguins. Whether she is asking for gravy (her favorite food) or searching for ice cream, she always makes her demands known. Often, if no one is in the kitchen, she can be seen searching the countertops and the freezer for the chocolate chips that mom keeps for cookies.
Our younger sister has a strong sense of compassion. She is always the first to help others (including her older siblings) or cheer them up when something goes wrong. She has a keen understanding of when people need help, and since she was young we have often noted how she would go out of her way to make friends with the elderly, sick, or children younger than herself. One of the girls on our high school lacrosse team tore her ACL and was in a wheelchair. When mom came over to talk to the team after the game, all of the girls were fawning over Annie, but she only looked at the girl in the wheelchair. Annie seemed to know that that girl had gone through a lot lately, and as we were leaving, our then two year-old sister blew her a kiss.
Our sister has many friends at her grade school, including many children in the St. Anthony’s program, a program for students with special needs. She loves to go to school and learn with her friends and teachers. She rides the bus and will often run to get to the bus (even though she is asleep for most of the ride). She will be in first grade this fall and is growing up so fast. She loves to count and to sing her ABCs. She is even excited to do her homework and pack her snack for the coming day.
Our sister Annie also loves to play with a toy ferris wheel and lots of stuffed animals and dolls. As we mentioned before, she loves music and will often borrow mom’s phone to play her favorite Disney songs. When she has the phone, she will also take pictures or go onto Snapchat. She enjoys looking at pictures of her friends from school on Class Dojo, the internet page for the St Anthony program – we call it her Facebook. She loves playing hockey and Frisbee with her brothers, swinging on swings, and playing soccer and lacrosse with everyone.
At Annie’s Christmas play, she was the star – literally. She played the star of Bethlehem, and stole the show. At the end, when it was time to bow, she dabbed. At her end of the year kindergarten performance, she counted out loud by herself for all to see.
These are just a few reasons why Annie is a wonderful person, a great sister, and a blessing for all. Without Annie, we would never have known what a joy it is to be around a person with Down syndrome.
You couldn’t have imagined who Annie would become. We’re sure that her future is bright, and that she will continue to be the center of our worlds. In the meantime, enjoy holding your baby sister while you can!