October is coming. A couple of years ago this month was simply, Down Syndrome Awareness Month and I was cool with that. I was happy to share about our kid. How great we think she is. How thankful we are for her. How smart. How pretty. How she was the person we didn’t know that we needed. I guess those things sound cliche, because once October 1st rolls around, all you guys will be hearing about is how great Down Syndrome kids are and how thankful parents are for them. It’s all true, but it’s also hard. Real hard, especially in those early years. That’s not the reason for this post though.
Now, October for us, is hard. We start thinking about what we’re going to be doing as a family when the 20th rolls around. The day of The Accident two years ago. I had really wanted to go to San Diego for a conference and sit in the back and listen to the Gospel, but it’s the same weekend as The Accident. The Gospel is amazing and I want the encouragement, but our family needs to be together. We don’t know what we’re doing, we just know we’re planning on being together that day, doing something.
Tullie is our most quiet and most private child. She’s content to play by herself. She loves Shopkins and puzzles. She and Boston were best friends. They did most everything together. When you have multiple children, they gravitate to siblings that they have the most in common and Tullie and Boston did just that. It may have been simply because when we were in the motor home, Tullie would sneak out of bed, hop in bed with Boston and entertain him with games. We’d wake up to the two of them giggling and Tullie would be playing peek-a-boo with him. She took the time to play his games. To love him. They truly loved each other.
The day of The Accident, Mike and I asked her, “Tullie, do you understand? Boston isn’t with us anymore. He’s with Jesus now. We won’t see him till we see Jesus.” She smiled really big and then gave us a hug. Mike and I just looked at her wondering if she would understand, and if she did, when and when she did what would the grief look like?
My dad does household repairs in the central Massachusetts area. He has a t-shirt that says, “Mr.Fix-It” and Tullie knows that he fixes things. The week after The Accident, my parents were here and she looked at my dad and asked if my dad could fix Boston and bring him back. She was beginning to understand. Her buddy wasn’t around anymore.
As time has gone on, Josiah and Ellison have continued with their sibling bickering, best friendship and being best buddies and a lot of times, Tullie has walked away because she didn’t want to participate in what they were doing, or she was annoyed with them. The dynamics of our family have changed and she’s had to figure out what her place is in our family. She is no less important. She is no less wanted, but she lost her best friend-the kid she hung out with.
Tullie has fallen in love with Shopkins. She plays with them all the time. She lines them up and creates stories with them. She creates her own world. Those Shopkins have become her buddies. As I was walking by her room the other day, I stopped and listened to the story that she made up. She kept saying, “Boston! I’m so glad you came!” “Boston come play with us!”
We all deal with grief in different ways, and in Tullie’s own way she has created a world out of her Shopkins and with Monster Trucks that protect her world and her brother is the protector and her best buddy. She has cried. She has loved. She remembers him very vividly and still plays in her own way with him. I weep at the loss, but I also weep because she is more honest than the rest of us. She may be quiet, but she is stoic and she is beautiful.
So, October. Down Syndrome Awareness Month. You guys are aware. I don’t need to prove her worth. I don’t need to prove what she knows or doesn’t know or how incredible she is. I don’t need to make her into something she isn’t. She is simply an image bearer who, I believe, believes in her Creator, has experienced a hard loss and is coping the best she knows how. She is the sweetest thing on the planet and I’m also aware that she is the easiest 12 year old on the planet. So, this coming month, I’m going to listen to Tullie play with her Shopkins. I’m going to smile each time she mentions her brother and when she teases her oldest brother and hugs her sister, because she is just as normal as the rest of us.