Question: Does Laura feel like she has to be the miniature mother while her mom is pumping, going to appointments, doing therapy?
Answer: No. I feel like the big sister who can help when the mom can’t.
I like to go along and help when the little girls have doctor’s appointments. I don’t have to, I just like to. We just have a few appointments once in a while, anyway. Not very many. And mom isn’t pumping anymore.
What I do every time a therapist comes is listen and watch and learn and sometimes help. That is three hours a month. Other children work hard at other activities like sports, and I work hard, too. I’m not very interested in sports. I like to do creative projects and to read and be outdoors. Because I have two little sisters with special needs, I get to learn some different things than a lot of girls my age learn, like how to put in an ng tube. I like learning how to do these things, and I like knowing how to do them. I also enjoy teaching them to other people.
Before I had little sisters with special needs, I didn’t…
…go to therapy sessions,
…have to take as long with activities like mealtimes,
…have as much laundry to do as I do now (laundry is my daily chore and I get paid for it),
…miss going on a family vacation like we did last year when we were adopting Katie. We had enough money to go, because it doesn’t cost very much, but we didn’t want to because other people were giving us money for the adoption, and we didn’t want to spend money on a vacation. We did fun things where we live instead and went on two vacations this year.
Now that I have little sisters with special needs, I still do things like…
…have Family Night every week,
…Girls’ Night every month,
…take turns going with Dad on errands like grocery shopping,
…go clothes shopping with Mom,
…take fun trips to the Franklin Institute, the North Museum, Landis Valley Farm Museum, the Pennsylvania Farm Show, Sight and Sound, and Longwood Gardens~
…go on family vacations (we’re getting two this year),
…Game Nights with friends,
…spending time with friends,
…celebrating holidays with my grandparents and cousins,
…watching Courageous in the theater,
…writing letters to my friends,
…art lessons and drawing pictures,
…acting out imaginary stories,
…tea parties at home or with my grandma and girl cousins,
…playing at the creek,
…frisbee, baseball, and volleyball with my older brothers,
…having Dad read to us every Sunday night until it’s very late,
…playing Mafia and Four on the Couch and other fun games with my friends,
…playing games like Settlers of Catan, Apples to Apples, Scattergories, Scrabble, Loaded Questions, Boggle, and Pictionary with my family,
…hand sewing and latchhook,
…stamping and making cards,
…doing other creative projects like this~
Because I have two little sisters with special needs…
…I don’t think people with disabilities look strange, like I used to. Now I’m more used to them, and I’m excited if I see them in public or on a video.
…I feel protective of them and don’t want people to think bad things about them because they have Down syndrome.
…I know what I would like to do when I grow up. I would like to adopt children with disabilities. I adore children with Down syndrome, and I am sure if I adopt children with other disabilities, I will adore them, too.
Verity and Katie are so sweet!
Babies who have Down syndrome have low muscle tone, and they melt onto you like butter.
Now that Verity knows the sign for love, she uses it a lot. Verity has a few different ways of telling us that she loves us, and that she wants to cuddle with us. She hugs and kisses and pats and signs “love” and says “wuv-oo” for “I love you.”
Katie can’t do any of these things except for patting, but we can tell which people she really loves.
The girls are both very cuddly and sweet. Sometimes when they’re next to each other, they will both reach over and pat each other. It’s really very cute to watch.
When I write all this down, it seems like the love is just a little part of the whole story.
But really, the love is all through everything and it’s there all the time.
~by Laura, almost 13 years old